Category: usher’s syndrome

Hello Struggle, we meet again.

“Leave no stone unturned in your effort to support the needs of your children. Do whatever it takes to thrive and not just survive.”

I received these words of wisdom 3 years ago almost to the day.

I received these words about 15 months after our family had left everything behind and moved to India.

Embraced these words roughly 6 months after we abruptly aborted our overseas relocation to return to the US so our youngest child could receive cochlear implants. 3 months prior to hearing these words, the pandemic began.

I gripped these words like a boxer in the last round of a fight, after having water squirted down my throat in the midst of a final pep talk.

I needed water, encouragement and I needed it to be the “last” round.

Dramatic? A bit Much?

That’s OK if you think so. For me – no description could be more accurate.

Before receiving those words, I felt like a mom who was at the complete mercy of the world. That no matter what I did, or how hard I tried – I would never meet the needs of my children.

We returned to the US to get our son the reliable sound he needed in the wake of progressive hearing loss caused by Usher’s Syndrome.

We returned to the US, but not to our home. We bypassed our home in Florida to move in with my parents home so we could surround our family with an abundance of support. It was not just our youngest that had incredible needs to fill. Our middle child had just started taking medication for ADHD and was also struggling with undiagnosed Anxiety and Autism Spectrum Disorder. My husband, daughter and I were exhausted from the intense disregulation and unpredictable behaviors often associated with special needs. So with all of that AND with embarking upon something as involved as cochlear implant surgery…. well – this mama just needed her mama.

I am so grateful for the support and hospitality of my parents during that season. So much love and healing surrounded us in that time. However, the reality was that our lives just got turned upside down, 3 months prior to the beginning of the COVID-19 pandemic with NO foreseeable access to cochlear implants.

So AFTER receiving those words of wisdom – “Leave no stone unturned in your effort to support the needs of your children and do whatever it takes to thrive and not just survive,” I felt EMPOWERED.

I was so tired of feeling helpless and despairing. I was delivered a call to action that I did not know I was hungry for or even capable of pursuing. Those words triggered a movement inside me.

We relocated back to the home we left when we moved overseas. Within 2 months of moving back, our youngest was in a therapeutic school for children with hearing loss and received his first cochlear implant. Our other two children were enrolled in school, extracurricular activities and reuniting with friends. Our middle son started receiving therapy and support from specialists to help manage and navigate his evolving needs as well.

And the drive to provide only grew from there.

The following school year we found a private Christian School located in close proximity to our youngest son’s therapeutic school. That way drop off and pick up were much more manageable. Because leaving no stone unturned so that our family can thrive involves making mom’s life more supported and more manageable too.

We applied for scholarships for the kids schooling, grants for their medical bills, underwent special insurance screenings and completed endless amounts of paperwork. We received nominations from special needs organizations, and anonymous gifts from watching friends and family all in the effort to help our family thrive.

And they started to. We all did.

Just because we were back in America did not make it seemless, trust me it was messy. It required a lot of trial and error. BUT….. there was a shift!

Jackson could hear. And talk. And understand. He had the best care team ever. From audiology, to vision, Speech, Listening and Spoken language, OT and Pre-K.

Garrett was making it through 3rd grade! It was touch and go at times behaviorally, but academics were a breeze. He was competing in recreational sports, supported immensely in a social skills group and feeling a sense of positive self-worth.

Our daughter was excelling in gymnastics and experiencing the most consistent form of schooling in years (having rotated between homeschool overseas, public school and “pandemic” school.)

My husband was making a positive impact at work and I was experiencing significant life-change in several areas of my personal development and growth. Areas that had been dormant for so long, such as in fitness and nutrition, employment (after a decade of being a stay at home mom) and other areas such as writing, coaching and public speaking.

I can’t believe I received those words of wisdom 3 years ago, almost to the day.

With all the life I just reviewed, it’s hard to confess that these past few months I have been struggling. Life somehow has felt almost as hard as those months living in a foreign country with 3 young children, 2 with unmet special needs.

My blog is meant to be a place where others can feel connection and encouragement. Where other moms like me might feel understood, known and seen. I strive to write from personal experiences laced with faith and belief that God is faithful, good and always with me. But lately it has been so hard to write.

My last blog was titled – when your mess is your message, but its still a mess. I haven’t written since… because the mess took over.

At the beginning of the school year we were in awe celebrating that our youngest was joining his older two siblings at their school as he was mainstreaming out of therapeutic school.

At the start of this year (2023) I even applied for my first full-time job since before my 11-year old daughter was born!

We felt a shift. We felt a new season approaching. We spoke about it with anticipation and excitement.

And then it returned. The struggle.

That all-encompassing feeling I know all to well. When the tension at home rises. Sibling fighting, hostility and tears abound on a daily basis. Phone calls from school increase. Threats of school dismissal become a reality. Medications that your child needs go on back-order. Grades fall. Unexpected financial strain. All the while, YOU Mama – just went back to work, and are blaming yourself for all of it.

And then,

Special needs child # 1 gets dismissed from school and now Mom and Dad are both working full-time while home-schooling the remainder of the year.

And then,

Special needs child # 2 gets his final warning and impending dismissal from school just a few weeks shy of the end of the year.

I tried to keep it together. Especially when I was at work at my new job, receiving phone calls that my son(s) are about to get kicked out of school. I tried to keep it together when attending the end of the year awards ceremony to support my daughter, but when they called my son’s name (who was at home awaiting a board review on if he could return) I couldn’t keep back the tears.

I tried to keep it together when I saw the Kindergarten graduation posts everyone shared, that we would not get to have, simultaneously wondering if he will even pass his Kindergarten Homeschool evaluation.

I tried to keep it together when my daughter sobbed after the end of the year ceremony when she exited the school to find me sitting on a bench with her two “dismissed” brothers who “everyone” was talking about and questioning her on.

That drive home from school I did not try to keep it together. I cried the entire 45-minute school commute home. A commute we chose for 2 years because it was one of those “stones” we turned over and committed to in order to set our kids up for success. That drive home, one interstate, 2 major toll roads and multiple others, I put on my glasses and just sobbed.

I cried because I knew WE tried. And when I say “WE” I mean ALL OF US. Jackson, Garrett, Gracelyn, My husband, Myself. All of their teachers and administrators, ALL of the ABA, occupational therapists, speech therapists, audiologists, specialists and doctors, WE ALL TRIED.

We left no stone unturned. And we saw them THRIVE.

It has been hard not to ask the question, after ALL that we’ve been through and all that we have worked so hard to accomplish for our children and family as a whole, why does it feel like we are back to square one?

Back to that marble apartment in India that amplified all noises elevating the shouting of our son with hearing loss and the yelling of our son battling anxiety. Where the noise level was so high and intense it felt like we were living life with a hostile action scene from a war movie playing on repeat in the background.

Back to the place of wondering if life will ever be calm.

I heard a quote once, “Roads were made for journeys, not destinations.” I love this because it reminds me NOT to fall into the illusion of “arriving” as if perfection or completion or complete wisdom is something that can be obtained on this side of heaven.

I believe, after years of unexpected heartache and celebration, we are ALWAYS on a journey, and we only seek to thrive along the way. Sometimes we will just survive. But we will not settle for that because we have tasted thriving. We know its possible. We will not give up hope.

So yea, – the past 3 months have been a STRUGGLE. Our mess is STILL our message, even though it is STILL a mess. And as much as my writings share stories of difficulty and God’s faithfuless, mercy and grace throughout, a lot of my blogs are written in reflection not in the midst.

And we are very much IN THE MIDST still. And God has comforted us and provided for us. We might be at a place where we are turning over stones and not finding anything yet. But I know that this season will pass. And I will never stop turning over stones and trusting in my Savior to be with me when it hurts, guide me through deep waters and lead me down the road HE has set before me.

I am comforted by scripture written so long ago yet feels as if it came from my very heart. And I am comforted in the truth that I am actually NOT enough. Therapy is NOT enough.There is no perfect school or state or home. But Jesus is and always will be MORE than enough.

Psalm 27:13 “Still I am certain to see the goodness of the LORD in the land of the living. 14Wait patiently for the LORD; be strong and courageous.Wait patiently for the LORD!

In it’s fullness: 1The LORD is my light and my salvation—whom shall I fear? The LORD is the stronghold of my life— whom shall I dread? 2When the wicked came upon me to devour my flesh, my enemies and foes stumbled and fell. 3Though an army encamps around me, my heart will not fear; though a war breaks out against me, I will keep my trust. 4One thing I have asked of the LORD; this is what I desire: to dwell in the house of the LORD all the days of my life, to gaze on the beauty of the LORD and seek Him in His temple. 5For in the day of trouble He will hide me in His shelter; He will conceal me under the cover of His tent; He will set me high upon a rock. 6Then my head will be held high above my enemies around me. At His tabernacle I will offer sacrifices with shouts of joy; I will sing and make music to the LORD. 7Hear, O LORD, my voice when I call; be merciful and answer me. 8My heart said, “Seek His face.” Your face, O LORD, I will seek. 9Hide not Your face from me, nor turn away Your servant in anger. You have been my helper; do not leave me or forsake me, O God of my salvation.

Full Circle.

Have you ever had a moment where you suddenly realize you have have come full circle? When you find yourself in the same place you once were, but this time it’s different.

For me, it was the day of a Doctor’s appointment. A very long-awaited appointment for my youngest son. We had waited 6 months to get in with this Doctor. In some cities and states, 6 months is a short wait for an appointment like this! But don’t get me started on that.

At the time this appointment held so much weight. I needed this doctor’s feedback. Without it, we weren’t sure where to turn. Which is why it is so ironic the memory I am about to share that was at the beginning of this “circle.”

5 years ago, I went to this very same doctor’s office, but it was for my other son. At the time I did not know this would be the first of many evaluations he would have in his life. The information I did know at the time, was that he was struggling with Sensory Processing Disorder.

He was only 4, but we needed to be sure that we were supporting him well because his struggles were already impacting his life across all settings. And as his mom, I desperately needed to know that my concerns and the ones that we were receiving from others were being heard and fielded more sufficiently than the anxious bouncing of my heart’s worries and stresses off my husband.

At the end of this evaluation, the Dr. handed me a diagnosis letter and a few referrals for therapy. But it was what she said at the end that never left me.

Yes, I had sought her opinion. Yes, I had brought my child to her for a formal medical evaluation. But I was not ready for her candid evaluation of what she informally witnessed about our family dynamic.

During this appointment, I was trying to share my concerns and answer her questions while managing a 4-year old with undiagnosed ASD and ADHD and a 2-year old with undiagnosed hearing loss. I was doing the best that I could. I mean heck- I was there, wasn’t I?!

But upon leaving she looked at me and said, “This is dysfunctional. This is not just Sensory Processing Disorder. This is not just one child. You need ABA therapy in your home.”

While I left that appointment with a formal diagnosis and a formal referral that I had sought out, I also left with resentment and anger and a feeling of condemnation.

In hindsight I think that I wanted to hear, “You are right mama. He has Sensory Processing Disorder and I will give you a referral for Occupational Therapy and everything will be ok.” That would have felt safe, having grown up the daughter of an OT. But she handed me one piece of paper that said not only Sensory Processing Disorder, but “potential ADHD and Anxiety” and another piece of paper that contained a referral for ABA therapy. The first piece of paper I held with my own anxiety because I associated those diagnoses with medication. The second piece of paper I held with fear because I had always known ABA to be the recommendation for therapy for a child with Autism Spectrum Disorder.

But of all the words that laid heavy on my heart, it was “dysfunctional” that pressed down hard on me the most.

I rejected her evaluation of us and began to think things like, “she has no bedside manner,” and questioned “what kind of doctor tells a mother this?” In order to maintain self I tucked those heavy words away and justified that it was just a piece of paper, a means to an end, a way to support my son. Like most mama’s, I pushed on. I pursued OT for Sensory Processing Disorder and put the rest of those papers in a “mental drawer” to be opened later, if necessary.

The irony of it all, is that I sought her out because I felt the dysfunction. Even today, the dysfunction is what I struggle with the most. I wanted validation and support. And she actually was giving it to me. She saw my struggle and basically said- “I see you mama. I see all that you carry. This is more than just ‘boys being boys.’ Your struggle is real.”

But at the time, I was offended and I missed it.

Fast forward two years to when I opened up that “mental drawer,” because IT WAS necessary. We were in a place where our hearts knew something else was going on and we were ready to know. Because not knowing was unhealthy. Not knowing was truly dysfunctional.

So we had another formal evaluation, but with a different doctor this time. ADHD and Anxiety were formally diagnosed and the recommendation for medicinal treatment was given… and accepted.

Now here we are, 4 years later. And I find myself back at that original doctor’s office. The one with “no bedside manner,” but this time for an evaluation for our other son. Which brings me back to the beginning of this story, where I found myself full circle.

This time I sat in the chair with what felt like a lifetime of experience behind me. I sat in the chair with the ability to communicate clearly and advocate well. I sat in the chair with the perspective of a mother who has received diagnosis after diagnosis, sat through testing after testing, tried medicine after medicine, school after school, surgery after surgery, therapy after therapy.

But this time I sat there knowing that she was right. Life was dysfunctional. And often still is.

I had no idea that her “calling out” of my reality those years ago would end up being one of the driving forces behind my perseverance for my children and my family.

Do not mishear me, I know that there is no such thing as normal. I know that life is hard and messy. But I also have come to a place where admitting that life for a special needs family has a different kind of stress to it is necessary. A kind of stress that can result in dysfunction that challenges our ability to thrive in society. It impacts everything. From schooling, to friendships, and finances. To attending church, having a pet, or playing a sport. There is no facet of life that special needs or disability does not touch.

So instead of avoiding those areas, I started to learn how to function there. I wanted to learn how we can thrive there. But I could not do that without acceptance of our limitations and asking for help. Both which are humbling to say the least.

I wonder how things might have gone differently if I was humble enough back then to ask , “What do you mean this is dysfunctional? And how can I help us be functional?” I didn’t realize at the time how much my heart ached for that.

But back to the present day, there I was, by God’s grace -much more confident in where I’ve been, confident in what I’ve learned, and willing to keep pursuing support and wisdom to help our family thrive. And her assessment and insight of our son’s needs was spot on. Not only was this doctor completing my sentences, but filling in the gaps.

Motherhood is such a sensitive subject. It’s such a sensitive experience. There is no one-size-fits-all approach. We all have different things to learn and we all find what works for our family. At the time during that first evaluation I had no idea what was coming. All I had was a Mama’s intuition. But it can be difficult at first to recognize AND respect your own intuition.

Where you are in your motherhood journey, what kind of  lives are speaking into you, and how well you know yourself can all impact your ability to discern your intuition. 

Over the years, I have come to know myself better as a mom. Experience has given me more confidence. Having a supportive community has provided the insight to help me see things more clearly.

I don’t know where you are at in your motherhood journey, but I do know that God chose you to be your child’s mother. I do know that sometimes there will be people speaking into your life with great wisdom, but also sometimes with great criticism.

I challenge you to sift through it all. Some of it will fall away very quickly- like when sifting sand at the beach. Once you lift it out of the water, it drains the tiny grains of sand away. But some of it is a little thicker and does not fall away as easily. And sometimes you may need a minute to look twice before you let it go. You may even be left with precious rocks that you will keep forever!

I understand that not everyone finds beauty in the same “shells.” We are all bent towards our own interpretation of value. And often we can find ourselves on the receiving end of something (like advice) that is unappealing. But like a clamshell that’s value is hidden inside, so unexpected and precious, it is important to note that you can find the most beautiful things in unexpected places.

In today’s world, we receive information from so many places, often more than we can digest. And there is some incredible wisdom out there too! Sometimes it comes invited and sometimes uninvited. It can come from a fellow mom, a family member or a doctor. But we moms do not have to take every piece of feedback or advice that we are given.

But remember that when you are given feedback that is a bit more seasoned with salt than you anticipated, and it stings – God does use all things for your good and HIS glory. Sometimes harsh comments and our most challenging moments can become the catalysts for strength and perseverance that we will need in the future for what life brings our way. 

While I still feel that “delivery is everything” when it comes to communication, I am grateful for how the Lord used that doctor’s candid evaluation so many years ago to give me the grit I would need for today. I value the truth spoken in love. And I am grateful that in life the Lord provides mercy and growth, and the grace to allow us to experience a “full circle.”

When past, present & future collide.

That moment when past, present and future collide. If you’ve experienced it before, than you may already have an image in your head. If not- let me share mine with you and maybe it will inspire recollection of one of your own magical moments such as this.

At first glance you might just see a sweet image of two hands together. One big, one small. But for me, This picture was taken because I simply could not let the significance of the moment pass by without capturing it and assuring that it could somehow be frozen in time.

For instance in this moment I felt every emotion possible. But of all the emotions there are, It started with frustration.

As usual, I was awoken by my youngest child in a rough and demanding type of a way. He- coming off of a wonderful night’s sleep in a big bed with the comfort of his mom by his side, me- coming off of another interrupted night’s sleep due to a small yet strong child pushing me towards the edge of the bed after being kicked multiple times during the night.

Why do I endure this you might wonder?

Because he’s my baby. My 3rd child. The one who broke me of all sleep training/parenting strategies and inevitably lead me into an unexpected attachment style parenting situation.

At first I thought my lack of motivation towards sleep training with Jackson was due to him being the said “3rd child.”

But when he obtained a conductive hearing loss at the age of 1 that was actually an undetected Bilateral SNHL caused by a genetic syndrome, I believe the Co-sleeping and attachment parenting was actually the result of an unspoken connection that developed between the two of us. One that I didn’t know was happening, but I believe he knew that we would both need.

But back to waking up that morning. Jackson usually shakes me with more energy than someone who just achieved R.E.M should receive and the volume of his voice is typically louder than usual as he has not put on his cochlear implants yet. Sometimes I respond similar to that of a teenager with a “5 more minutes!” Sometimes I just can’t help but smile (after I finally “come-to”) because he has a way of looking at you as if you are the most amazing person in the world.

Sometimes he is ready to get up and get going. Other times he actually wants to talk and snuggle a bit more. This particular morning he found his hand in mine and he said, “Look mom! My hand is almost as big as yours! It’s getting bigger! Soon it will be as big as yours and then I can be your husband!”

I immediately began to laugh and then he laughed and it was a moment full of giggling and tickling. Then he was off and ready to start his day and as soon as I got up to begin mine, I just couldn’t stop thinking about what he said.

Precious Moments like this one always send me on a trip down memory lane.

I started to recall some hard and wonderful moments from the previous years.

I remember that checkup when the pediatrician asked me with concern in her voice, “does he have any words yet?”

I remember when he only had 30 words and then he got hearing aids and within the span of a few months he was up to 300. It didn’t matter that the typical 3 year old had ____ many words, to us his development was monumental.

I remember when I was told that he qualified under the deaf and blind category for benefits and it deepened the reality that his syndrome will inevitably lead to vision loss.

So hearing my 7 year old son speak in complete sentences with thoughts regarding his growth, and his future…

Takes my breath away.

Sometimes our present becomes priceless because of our past. And sometimes our future becomes full of hope because of how our past turned into a present that we never thought possible.

As we embark upon each New Year, we reflect on what has passed and we take stock of our present. And with these reflections we consider what we hope for.

For some, this is an annual experience, complete with new a planner, or journal, goal-setting worksheets and a fresh “one-word” for the year.

For others these practices are rejected and avoided at all costs. Maybe because it is cliche and all too often filled with fleeting promises that will be forgotten after the buzz of the new year fades. Or maybe because new years hopes had been established in years prior only to be met with disappointment and heartache.

Regardless of your theory or opinion, I think it is important to take a moment to think of where you have been, and where you are now. If those reflections are painful, maybe it is necessary to do so with the support of a loved one or a counselor. In doing so, my prayer for you would be that your tomorrow finds hope possible.

If you find that you connect with myself and my life stories, I pray that your reflections remind you of how far you have come, and how faithful God has been. He has seen you and I through the deserts and the valleys, met us on the mountaintops and at times even parted the seas.

I pray that you see your worth and the impact your life has on those around you. And that you give yourself permission to establish hopes for your new year and trust that the Lord is always at work in your life. And most of all- “Take delight in the LORD, and he will give you the desires of your heart.” Psalm 37:4

Every mama needs someone who gets “it” and someone who wants to.

Every day after I dropped my daughter off at pre-K, I would let my (then) 3-year old son run around the play area as I sat down exhausted from the “getting-3-kids-in-the-car for school drop-off gauntlet.”

As soon as I sat down and took a deep breath, I would find myself back on my feet, racing to prevent my son from the mishap that was about to ensue. And once the situation was intercepted and diffused, I would run back to the fussing baby I left in the stroller.

I recall thinking, why do I ever leave the house?

I watched as other moms sat, chatted and enjoyed adult time while their children played. It was so easy to assume. To watch them and think, why can’t I have it so easy?

Let me stop here.

Because despite my struggles, and despite what I know now about the needs of my boys, I know for a fact that NO mom has it easy.

All of us moms struggle and thrive, weep and rejoice. There is SO much about the experiences of motherhood that are universal.

But for sake of sharing this personal anecdote, I wrestled thoughts like that at that time. Because at that time- I was drowning.

I had 3 children- 5, 3 and a baby. In order for me to make it from the car into the building where my daughter’s pre-k class was, I had to use the side-by-side double stroller for the boys. I would force it through several doors that I fully believe widened supernaturally in a “Harry Potter” kind of way upon my passing through. I could feel some of the other moms watch me struggle and wonder why I was insistent on using this stroller. I tired of the “are you sure that’s gonna fit?” comments.

Trust me, I had tried the other option. But they all ended with the 3-year old escaping to the point of getting lost OR a full-out wrestling match between us, as I struggled to keep him by my side. Did I mention there was a baby in tow? And a 5-year old who needed my attention as she worked through all the feelings that going to school for the first time brings.

So yea. I used the double stroller, and I learned to not care.

It wasn’t just the transitions that required reinforcements. There were so many instances; on playgrounds, during playdates, being invited to another’s house for a meal, or even trying to catch up with other families before or after church where it was clearly evident that my child’s behavior was not approved of, and definitely misunderstood.

During the year that my 3-year old turned 4, I battled the urge to take him for an evaluation. I daily wrestled between thoughts that maybe there was something else contributing to his behaviors, or maybe it was just me. Maybe I was the problem. Maybe I wasn’t firm enough, consistent enough or tolerant enough.

That year was rough.

But it was also the year that the Lord gave me one of the greatest blessings I would ever have. At the time, I didn’t know it, but I felt it.

She was the mother of another girl that was going to the same pre-school. In fact, she was the one who told me about the pre-school. Her husband worked for the organization that we had moved from Virginia to be a part of and they were the ones that welcomed my husband, our two-children and my 8-month pregnant self to the area just a year prior.

The way they welcomed us was unlike anything I have ever experienced. It wasn’t just the way the way they stocked our fridge and were waiting to greet us at 10PM the night we pulled in with the moving truck, or the way they immediately connected us to a church and a community, it was the way they embraced us as if they had always known and cared for us.

I felt it this one particular day after we dropped our daughters off at pre-k and we met up in the empty church hall to let our boys play. As we started to attempt a conversation, my 3-year old started to fall into his typical patterns of “play” which meant intervention was necessary and conversation an illusion and I just couldn’t hold back the tears.

I was exhausted. Tired of trying and failing. Tired of trying not to worry about what other people thought. Tired of wrestling between thoughts of whether or not there was something wrong with him or something wrong with me.

She looked at me and simply asked, “Oh no, are you ok?”

Upon that, I could feel my body kind of surrender. I stopped wrestling my son to stay still, I allowed myself to kneel on the ground and exhaled some tears. I felt safe sharing with her my fears and concerns. I shared with her how I truly felt, and how much I had been wrestling with the idea of talking to someone about my anxiety as well as my son’s behaviors. I verbally processed with her how I didn’t know what to do first, but I knew I couldn’t just keep going on the way we were.

She not only listened, but without any suggestions, any correction, or the condemnation that can often accompany well-meaning advice, she provided affirmation, love and encouragement. She let me know that she could hear and see my anguish. But most of all, I felt like she let me know that she could see a mom who loves her kids and is just trying to do what’s best, and struggling to figure out what that might be.

Isn’t that amazing?

What’s even more amazing is that she has never stopped. That was over 6 years ago.

In the beginning, there was still so much unknown, still so much to learn. Over the course of our friendship my middle son received an additional diagnosis each year. He started with sensory processing disorder at age 4 and now at age 9 we have identified ADHD, Anxiety, ODD and Autism Spectrum Disorder.

My youngest son also was initially diagnosed with a speech delay, that after over a year of intervention changed into a concern for hearing loss. She was there with me in the hospital as he was put to sleep and I awaited the results. She sat with me as I processed that he had hearing loss in both ears and was going to need hearing aids. She navigated the darkness as we awaited the genetic testing results and then the reality of what was the cause- Usher’s Syndrome.

She’s been through 2 cochlear implant surgeries with us, she endures the noise volume in our house that is often off the charts and she never gives up trying to stay connected and get together even though we are limited in availability because of commuting to school and therapies. And she also tells me that I am doing a great job as a mom, usually at the exact moment I need to hear it.

I share this specific detail, because when you meet someone, when you find a friend, you connect based on what you know about them and how you feel around them. She did not know then, all that was to come.

She also has 3 children, similar ages to mine and that means her children have walked through the unknown with us as well. Which means her children have often experienced the struggle too.

I still to this day am amazed at how she continues to balance the parental obligation to protect and aid your own children when they experience negative behaviors from another child, maintain boundaries, and at the same time when needed offer grace, wisdom and correction in love! She has become a parent figure in the lives of my children that they not only can trust, but can rely on for a model of what grace and authority looks like. And she has lovingly educated her children on diversity, special needs and various disabilities.

I won’t forget to mention that her life has not been without challenge! She has walked her own journey of difficult pregnancies, early deliveries, navigating unexpected and unpredictable health needs for her children all while homeschooling and juggling the multitude of needs that motherhood in general brings. She has taught me so much. She is a warrior.

I don’t know how she does it, but she inspires me.

She inspires me to be a better friend.

At one point in my life I thought my friendships would be only with other parents of children with special needs. Which would be OK if that was the case. I thought that playdates would only be possible with other families who knew the social and behavioral struggles that we navigate every minute.

But her family has blessed our family so much with the opportunity to learn and grow and somewhat “practice” all they are learning in therapy about appropriate social behaviors, emotional regulation and self-control. Which I fully believe is the blessing of playtime for all parents and children, regardless of their needs! But there is something so special about our time together, because every time we are, for a moment, I feel like I am just a mom, and they are just kids. The “extra” realities or challenges we face or will face seem to fade away.

It can be very easy to only see life through one lens when you have children with extra needs because there is not an aspect of life that disability doesn’t touch. This can often create a barrier for myself and others from connecting.

I discovered at some point on our journey that honesty and transparency are necessary for me to care for my family well and for myself.

For a while I felt very uncomfortable using the term “special needs.” Especially in the early years when the most common response from others when I tried to explain that there was more to my child’s behavior than meets the eye was, “Oh, he’s just a boy,” OR “He just needs more discipline.”

It honestly took several factors for me to feel confident to use the term, almost as if I needed an acceptance letter into the special needs community.

When your child’s disabilities are not as visibly obvious as others- parents, schools, teachers, and even insurance companies can make it feel like we live in a world where we are either “too special needs” or “not special needs enough.”

It wasn’t until after connecting with other parents who had children with similar needs, and speaking with counselors, and therapists, reading books, and attending conferences that I started to realize using the description “special needs,” or “extra needs,” or even “child with more” was perfectly accurate to use.

When my husband and I took inventory over how much of our budget and schedule, energy and emotions and unfortunately our conversations revolve around therapy, medicine and doctor appointments, we began to feel affirmed in accepting that our lives were greatly impacted by the needs of our children.

That being said, I know for a fact that special needs or not, it is hard to find a loving mom or dad who doesn’t find themselves overwhelmed by or just constantly trying to balance all those things mentioned above. Every parent who loves their child is carrying a lot and deserves someone who can come alongside them and say, “I see you, and you are doing amazing.”

I never want another mom to feel unable to share their struggles with me. It is motherhood that unites us, and IT SHOULD!

They say it takes a village to raise a child and that is because child and parent alike need the support of others.

Every mama needs someone who gets “it.” Someone who can practically finish their sentences when sharing their heartaches and hopes. And every mama needs someone who wants to. Someone who is willing to meet you where you are, ask questions and learn how life is different for you as well as how you can relate!

While some of our experiences in motherhood differ, my beloved friend has always held a posture of someone who genuinely wanted to know what life as a mother of children with special needs was like, how I was handling it and how she could support me. And I can honestly say that her friendship is priceless.

I can’t wait to share more personal stories and thoughts in my next blog about how important it is to have a friend who has also walked your road before AND/OR is walking it at the same time as you! Stay tuned as I share how valuable it is to be close with other moms who have children “with more” like yours!

Phone calls & field trips.

“Hello?”

“Hi Mrs. Braucher this is the school nurse, Garrett is complaining of a stomach ache, can you come pick him up?”

For weeks, this exact phone dialogue was on repeat. After the first couple phone calls, as any “good mama” would, I picked him up and kept my eye on him throughout the afternoon. It’s amazing how fast kids can recover from a stomach ache once they’re home watching TV and requesting snacks, am I right?

But as any “smart mama” would (this is where I would insert the sarcastic laughing emoji) I could see through the facade. As consistent as the “stomach aches” became, the one consistent truth that remained- Garrett wanted out.

School has never been easy. In fact, if I could homeschool him (and I have tried twice now) I would. Ever since Pre-K, while Garrett was physically in school, we would receive a phone call for one reason or another, and when we picked him up- we would receive the dreaded “report.” Failure to stay in his seat, failure to follow directions, failure to keep his hands to himself, failure to wait his turn, speaks out of turn and the list goes on and on. Most littles one struggle with these same issues when they are learning to attend school. I would tell myself and others would tell me as well, “He’s just a boy being a boy, “He’ll grow out of it.”

When the same issues stick around grade after grade, and the reports evolve, any “smart mom” would begin to wonder, right? The reports got a bit more interesting though…

“Mrs. Braucher, Garrett cut his classmates hair.”

“Mrs. Braucher, Garrett peed in the grass during recess.”

“Mrs. Braucher, Garrett won’t stop kissing the girls.”

“Mrs. Braucher, does Garrett have a lunch account? He continues to get school lunches and claims they can ‘put it on his tab.'”

And over the years the phone calls started to get more impressive….

“Mrs. Braucher, Garrett has a lady bug stuck in his ear.”

“Mrs. Braucher, Garrett says that he was stung by a bee, a wasp, and a hornet simultaneously.”

This sweet boy of ours makes me laugh and smile greater than I ever could have imagined, yet at the same time makes me want to shout his name like the names Alvin the Chipmunk and Dennis the Menace have been shouted before.

There was one phone call in particular though that required some intervention. The day the school nurse called and said, “Mrs. Braucher, Garrett said that he has a dairy allergy and that he had chocolate milk for lunch and he needs to see a doctor immediately.”

This kid.

If you have a child like Garrett, a witty, clever, brilliant child that can manipulate like the best of them, never let them know things you are not certain of yourself. They may just use it as ammunition.

We had speculated a possible gluten and dairy sensitivity over the years. But we didn’t know for certain. In fact, we had removed dairy from my diet as a nursing mother, and gluten from his diet twice already. I also was not a stranger to the notion that these “food allergies” can be deemed the culprit cause of ADHD, Autism, Sensory Processing Disorder and the like. But we were also in the midst of discerning if Garrett was battling an anxiety disorder along with his ADHD. He was already taking ADHD medicine and I hesitated to place him on a second medicine, so navigating the root cause of these “stomach aches” as potentially a food allergy was the next step.

Unfortunately, the pediatrician required bloodwork in order to confirm this theory. For me personally, I will consider everything, and will pray and discern what I feel the Lord is leading me to do for my children. Somewhat easy for me to say, however getting THE CHILD in question [with anxiety] to get bloodwork done is a whole other basket.

See, for Garrett, over the past couple of years we discovered it is necessary to make “field trips” to certain doctor’s appointments. This is our best chance at success. And success in this case equals “going through with” the appointment and not say, exiting the building and running down the street. Which HAS happened. Thus, our hope is by the 2nd visit, he will go through with the appointment. So we had our “field trip” for the blood work and surprisingly it went well!

So, when Garrett told the nurse that he ingested dairy and it was time to see the doctor, I decided to capitalize on his request and took him straight from school to the lab. Always better when he thinks it’s HIS idea.

I wish I could say our “field trip” prepared us for victory. But ultimately, what happened during the bloodwork was not a complete surprise. I think deep down I knew it would happen, but I was so hopeful. Maybe that’s why it hurt so much when it happened the way it did. Garrett was able to get through the check-in process, the waiting room, and sitting in the lab chair. They even were able to demonstrate tying the band around his arm to locate a vein. Once the blood work process began, that’s when the fight kicked in. He screamed, lashed out, head-butt and bit. He did anything to anyone out of defense.

I know that these reactions are not isolated to a child with special needs. Getting a shot or blood work can be scary and painful for any child, and even adult! But I think the difference is, when it was over, no hug or embrace, no sticker, lolly-pop or words of encouragement was going to help him recover. The anxiety, the pain, the adrenaline and the inability to self-regulate took over and he continued to physically and verbally take it out on me. I knew his fear and anxiety had turned to anger, and I was the scapegoat. I could see that his nurses were in shock (even though I gave them forewarning) and one of them even began to yell at him. I could see that they wanted to teach him a lesson and protect me. And I appreciated their concern. trust me, I do not condone this behavior. But knowing what I know about him and the needs that he has, this was all so much more than a boy being disrespectful. And this was not the first time I was the recipient of this verbal backlash. Hence, why we take these “field trips” or “practice runs.” But regardless, no level of prior experience, or special needs education and comprehension can remove the pain I felt. It took everything I had to get both of us out of that building.

Once we made it outside, he refused to get into the car and hid behind a column for about 10 minutes. I let him while I just cried. As hurt as I was, I could only imagine all of the emotions he was battling. I could see it on his face. Fear, anger, shame, confusion. FIGHT AND FLIGHT at it’s finest. When we got into the car, we both cried for a solid 15 minutes. It was one of the first times that I experienced his geniuine remorse. Even though, about an hour later he was fine. I saw remorse nonetheless. Something that most of the time, he had lacked and brought us concern. He even asked me if he could keep the bandage on his arm and wear it at school to show his classmates of his bravery.

Part of me wanted him to do so. He needed to be able to celebrate victories if he was going to be able to do it again! But I kept battling the question, was it really a victory? He seemed to feel so. But I wasn’t fine. I was grieving.

I still am.

In fact, I am not just grieving the struggle and heartache that can come with some of these experiences of being a parent of a child with special needs. I am battling shame and loneliness as well.

See, I actually wrote everything that you have just read in this blog post, over 3 months ago.

This particular doctor’s visit happened in June of 2021.

Today is October 4, 2021.

I tried to sit down several times in the past few months in an attempt to finish this blog.

Then I settled on the idea of writing something unrelated to special needs because I have felt so broken and messy in this part of my life. I doubted that I had the wisdom or right to write on such a topic.

Navigating the topic or the life with a “special needs child” or a child with “extra needs” or a child with “more” can feel so overwhelming. I have one son with an obvious need. He now has 2 cochlear implants and is progressing amazingly in his therapy and at his special school for children with hearing loss. I am so grateful for all the growth and celebration we have experienced this past year with and for Jackson.

But my sweet Garrett. My incredibly bright, witty, charismatic, Garrett has struggles that are not as visible and can often be mistaken for bad behaviors and bad parenting. We have have watched him grow from this adorable curly haired 4 year old boy with the greatest “Garrett-ism’s” and no fear/no filter personality, to a now 8 year old boy with the same quirks, but the fearlessness has more clearly presented itself as a struggle with impulsivity, and the “no filter” has brought on concerns of autism spectrum disorder.

We have been through so many evaluations, received a new diagnosis every year, have trial and error-ed our way through prescription medicines and dietary changes. We have struggled with shame, frustration, failure, and loneliness in this arena. And when I say we, I mean all of us. Not just us parents, but his siblings, and he himself have struggled with the impact that a social/mental/learning disorder can have on all facets of life.

It is so easy to misunderstood and it can be quite isolating when all most people see is the ” behaviors” that your child exhibits without the full understanding of where they come from. It can feel hurtful when instead of validation, as a parent you are offered correction after correction with a pinch of judgement and a splash of failure. And so for me- It can also be tempting to think- “I’ll wait until we get through this season, or until we have the next evaluation, or until we make headway in therapy or until I have it all figured out before I even consider that I have anything worth sharing with the world.”

If I continue to “wait until”, I will be waiting forever.

So today I will write.

Not for the mere purpose of “airing my dirty laundry” or to drop a “Dear Diary, I had the worst day ever” type of post into the google-sphere. But because I feel compelled to share about my journey with anxiety and with parenting children with extra needs. Back in June, I was not finished processing my experience and emotions from that particular doctor’s visit. I even struggled with this nagging voice in my ear that was telling me I have no right or authority to share on the topic of parenting children with special needs. A condemning voice whispering that I have no right at all to share about life’s trials because “it could always be worse.” Maybe that voice was the enemy, intending to prevent me from being transparent with others. Because sometimes the greatest encouragement can be simply reading someone elses’ words and connecting with them, realizing you are not alone. But the enemy wants us to feel alone. He wants us to always doubt God’s presence or goodness. So he capitalizes on our struggles and whispers lies to keep us held down by the weight of our pain.

I also hesitated to share my experience because I respect the fact that I am sharing about a real person, who one day will be an adult himself. One day in the future, if he reads these stories, I want him to ultimately see how “human” I am, how very much I love him and will never stop, and how very big our God is.

So today, in the middle of the mess, in the thick of the dysfunction, in the heat of the troubles-I am going to write to remember.

I am writing to remember that life has been messy and hard, but never once has God been absent. I want to infuse it in my brain. I want my children to know it. I want other moms to believe it and to take inventory on their past experiences with a new set of glasses. Not the rose-colored ones, but not the tinted ones either.

When I draw near to Christ, I have eyes to see and ears to hear. I am able to look back and see how he has prepared me for such a time as this.

I look back on the day that we received the news that Jackson has Usher’s Syndrome. I reflect on the various diagnoses that Garrett has collected over the years. And I continue to process the recent news that all of his challenges explain how he too, like so many amazing children before him, hold a special place on the Autism Spectrum. I remember all of the feelings. I still experience them now. Sadness, pain, worry, confusion, anxiety, guilt, grief. Some days can be so heavy with life’s challenges that it feels like you just have to keep putting one foot in front of the other to keep going. It can feel like if you stop moving, the waves will overcome you.

But I have committed with my heart to remember that with Jesus, they won’t. With Jesus, the waves may keep coming, but HE is still greater than the waves.

With Jesus, I continue to be guided towards relationship with HIM and to prioritize self-care. You see, God chose me to be the mama for these kids. I may have to remind myself every day, but He did. And he did not choose me without promising to equip me. By the power of His word and the power of the Holy Spirit guiding me into specific friendships, specific doctors and therapists, special grants and scholarships, I continue to keep going.

He will never leave me or forsake me. This is true for Garrett, Jackson, Gracelyn and Adam.

This is true for all of God’s children.

This is true for you mama.

You are not alone. You were chosen to be his mom or her mom.

God WILL carry you and strengthen you, and be the parent when you are bone-dry.

His promises are forever.

“For you created my inmost being;
    you knit me together in my mother’s womb.
I praise you because I am fearfully and wonderfully made;
    your works are wonderful,
    I know that full well.” Psalm 139:13-14

Hope

How powerful are the moments when all of our senses leap with incredible awe and joy? Have you had one of these moments recently? Or maybe it has been so long since that you can hardly remember what that feels like.

Yesterday, our 5 year old son told us he was ready to take the training wheels off of his bike. We had tried this a couple times before, but in the end had to replace the training wheels until a later date. This time, I could see it in his eyes and I too had a feeling, he was ready.

But the moment of watching him get on that bike and ride off into the sun, the feeling of complete joy and awe that washed over me; I wasn’t ready for that. The cheer that bellowed from my heart for his victory was so great, yet also so unexpected.

To be honest, the experience took my breath away. Complete awe and joy.

How could I expect anything less? I witnessed my 5 year old son reach a goal, experience victory over fear, and enough balance to get the job done. This milestone is huge for all children! But for Jackson, with a diagnosis of Ushers Syndrome, and the placement of a cochlear implant, balance has always been in question. In fact, so many things were, are and remain in question for Jackson. With progressive hearing loss, the concern of whether he can hear us has been in constant question. With Usher’s syndrome, the potential for future vision impediment, loss and possible blindness leaves us in the dark.

And if I can be transparent…..the past few years we have battled several seasons of feeling in the dark. In 2017, after a decade of praying, wrestling and discerning….we felt the peace in our hearts to pursue the longing and fulfill the leading to move and serve overseas. The day of our flight to visit our future country, Adam and the kids were in a serious car accident that left Gracelyn in the hospital for a few days requiring surgery on her face. The following months felt dark with sorrow, grief and fear.

In times like this, the temptation to doubt God, choose anger and submit to fear is powerful. Prayer, counsel, healing and the “peace that passes all understanding” lead us back to continue what we began and rebook our trip. And it was incredible. We returned back to the US with the choice between two states in India. Our leading towards one of the two was confirmed. We were excited and anxious, yet hopeful. When you make a decision to move your young family of 5 overseas, it is no small feat. But when that decision gets challenged again and again, darkness seeps in once more.

The option to move to the city of choice was not possible for various reasons. I often shouted in my mind, “Lord! What are you doing?” Doubt, anger and depression set in once more. Resisting these feelings was much harder the second time around. Yet one day, I found myself able, to sit in peace. I believe I sat in the peace that our Great Creator, our Sovereign Lord, the one who sent his Son to live and die so that all may know God and have living and eternal hope, MUST know something I do not. HE must have closed that door for a reason. He has a greater view than I. And HE is worthy to be trusted.

So when we felt the confirmation to choose the other state in India to move to, and the hope of what was to come washed over us once more, you can probably guess how we felt when the month we were supposed to depart, we found out that our youngest had bilateral hearing loss and required hearing aids.

And when the week before our flight to depart the US, we found out that he has a genetic disorder called Usher’s Syndrome, you can imagine the grief, confusion and utter despair that we ensued.

So how then did we still go? How then with so much pain behind us, and grief and uncertainty ahead of us, did we still move to India? And why do I keep revisiting these experiences and sharing them on my blog in different ways again and again? I think back to the incredible history of the Israelites and how many times they were reminded to remember. In Exodus 13:3 it is written, “Remember this day, the day you came out of Egypt….” In Deuteronomy 4:9 Moses says, “But watch out! Be careful never to forget what you yourself have seen. Do not let these memories escape from your mind as long as you live! And be sure to pass them on to your children and grandchildren.” I can’t stop remembering and I can’t stop learning from these past few years. And I wish I could let you feel what I felt. It is hard to put into words when you feel peace to walk into the unknown.

There were a handful of tangible things that provided us comfort in moving to India even though we were only just beginning to identify what our son Jackson’s needs would entail. The most powerful factors however, were the past experiences we had of walking with the Lord that included trusting HIM with our tomorrow’s and seeing how HE never left us in our yesterday’s. I believe these to be the ingredients of hope.

When I look at our nation today, hope seems to be hard to experience. We are a people being flooded by fear. Constant fear robs us of the ability to trust. We live our lives daily, waiting for the “other shoe to drop.” Our brains and bodies are skilled at retaining memories of trauma. And on the contrary, we require intentional study and the practice of mindfulness to retain and extract memories of joy. I believe it is the experiences that involve the most senses that are easiest to extract. This explains why when we smell a familiar scent in the air, it often brings us back to a very tangible memory.

One of our first meals upon moving to India. The same restaurant and the sae

So when Jackson rode that bike, I shouted, and lifted my hands in the air and ran after him. The more I engaged all of my senses in the celebration, the more I couldn’t stop! I was encompassed by the feelings of great joy and thanksgiving. These are the moments I do not want to forget. These are the fibers of hope.

When we returned to the US, after only 9 months of living overseas, heartbroken, exhausted, confused and worried, the moment I saw my parents for the first time I could not stop crying. My intense tears held inside every emotion possible. I was grateful, to be actually physically hugging them. I was grieving, over how far away we felt from one another. I was resting in their arms, as a daughter who needed her Mom and Dad. I was exhausted from carrying the fears and experiencing the struggle of watching Jackson’s hearing decline and realizing that in order to get him the care he so desperately needed, returning to the US was imminent. I remember every detail of that reunion as if it still resides in my 5 senses right now. It was an experience involving both extreme joy AND extreme sorrow.

The months to come brought both joy and sorrow as well. We experienced more darkness and uncertainty every passing month. The expedited move back to the states, the choice to move to N.Y instead of returning to Florida, did not exactly fulfill the immediate need, getting Jackson cochlear implants. We were at the mercy of the U.S medical system and a worldwide pandemic. The very system that we knew would provide the care that Jackson needed, although has always been hindered by scheduling and insurance was now rightfully preoccupied with a pandemic. Little did we know In December, upon arriving after our rushed exit from India, that Jackson would not receive his cochlear implant until September 2020. Little did we know that his surgery, our next home and place of employment would not be in N.Y, but Florida. That almost one year later we would return back to the same townhome and the same job that we left when we moved overseas. So many months of grieving over what was, anxious over what was to come, and waiting for God to reveal the answer.

Picture on far right-Suitcases departing to India. Picture in middle- suitcases departing back to the US. Picture on Far left-me exhausted from packing.

I took walks in our neighborhood when we returned to Florida, remembering the walks I use to take before we moved. Each time, I asked myself, “God, did we really go? Did we really move to India, or was that my imagination?” Some days, it felt like I needed to check the pictures for proof. Some days, I was angry. Shouting, “Lord-it took me so long to be ready to go! Why would you finally give me peace, and desire to move overseas and leave everything I know, with my 3 young children….only to send me back no less than a year and in hurry and angst?”

Then, I hear this still, small, voice speak to my heart, reminding me that every day, every year, every moment is but a thread in the tapestry of my life that HE is weaving.

I have experienced heartache, we all have. In so many different forms. But OH THE AWE I have experienced too. To hear my son speak and communicate with words upon receiving hearing aids and now cochlear implant. To witness the resilience of my children. To see the incredible growth in my spouse. To hold the Faith in Jesus, that I always prayed I would have. I am in awe of how HE has worked in ALL things for my good.

I always thought moving overseas was going to be my greatest challenge. Little did I know, that God was using the journey of my heart to trust HIM completely with my life and the life of my husband and children. Little did I know that HE would use India to prepare my heart and mind for all that was and is to come.

When I was younger, hope came easy. In fact I couldn’t understand a cynical point of view.

When I became an adult, it was easy to become cynical.

When I became a mom, I thought there was no other choice.

Life can appear to hand out mountain after mountain, disappointment after disappointment, heartbreak after heartbreak.

Becoming jaded does not take much effort.

Becoming hopeful….. that is the real challenge.

Becoming hopeful…..that is a gift.

I have become hopeful once again. I am experiencing hope because I can recall on HIS faithfulness. I have hope because of HIS promises.

I do not have hope because life is easy and everything works out.

I have hope In HE who overcame death. I have hope in HE who promises life eternal, free from suffering. I have hope in the God who has never left my side.

I am finally ready to say goodbye to India. For now. In HIS perfect timing (however refining the wait may be) God has revealed what’s next. In a few days, we will officially become Fellowship of Christian Athletes (FCA ) staff once more, but this time, here in Orlando. I can’t wait to share all that HE does next.

— Grateful to be a servant of the MOST HIGH

1 Peter 1:3-9

3 Praise be to the God and Father of our Lord Jesus Christ! In his great mercy he has given us new birth into a living hope through the resurrection of Jesus Christ from the dead, 4 and into an inheritance that can never perish, spoil or fade. This inheritance is kept in heaven for you, 5 who through faith are shielded by God’s power until the coming of the salvation that is ready to be revealed in the last time. 6 In all this you greatly rejoice, though now for a little while you may have had to suffer grief in all kinds of trials. 7 These have come so that the proven genuineness of your faith—of greater worth than gold, which perishes even though refined by fire—may result in praise, glory and honor when Jesus Christ is revealed. 8 Though you have not seen him, you love him; and even though you do not see him now, you believe in him and are filled with an inexpressible and glorious joy, 9 for you are receiving the end result of your faith, the salvation of your souls.

Mother’s Day.

It was the weekend before Mother’s Day in 2018. We went to Cocoa beach and had an incredible day. But as the day was ending and we were rinsing off the sand, the day took a turn.

To this day I can see what happened clearly, and at the same time, not clearly at all. The three kids were sitting at barstools overlooking the beach. They were passing snacks and being yelled at for trying to sit on the ledge. That is when Jackson fell off the pier. It was a fall close to 15 feet. He landed on his back on the sand. I can still feel the moment when his foot slipped out of my grip.

Fast forward to Mother’s Day one week later, I found myself sobbing in lobby of our church. I couldn’t stay through the entire service because I kept recalling the previous weekends scare. I was grieving over the events of Jackson’s fall. My heart squeezed as I recalled running down the pier ramp and onto the sand. I scooped him up into my arms, and we rushed him to the hospital. I cried that Mother’s Day because my mama’s heart hurt at the reality that one weekend earlier, my grip was not strong enough to hold him. By the grace of God, Jackson was not only OK, but completely uninjured.

Jackson today, May 2020.

I praise the Lord for his mercy that day. Even so, the painful memory still endures. And unfortunately, before Jackson’s fall, I was not a stranger to these feelings of pain and shame. I remember as clear as day when Gracelyn was 1 year old and 1 day, and I gave her peanut butter and jelly for the first time. I was so excited to share such a treasured treat and I looked forward to many PB&J days to come. That is, until the reality of her peanut allergy appeared.

I can remember her small one-year old body being strapped to an adult sized bed in the ambulance with EMT’s struggling to get an IV in her while I sang the only song I could think of to try to distract her, the “Happy Birthday” song. Hours later, following epipen and 2 steroid injections, she was recovered and we journeyed home with the trauma behind us and instructions for a new life ahead.

Sweet and strong Gracelyn, today, May 2020.

And I will never forget the day that Garrett’s school called us in, lead us down a hallway and had us stand outside a door to watch our son destroy a classroom. The beginnings of Sensory Processing Disorder, anxiety and ADHD could explain the long story, but the short of it is, a scared little boy was unable to process the big world around him and desperately needed physical touch to ground him. A hug, a squeeze, something. But the public schools have their hands tied and unless a child has a 504 or an IEP, the child is left to wrestle through their wiring and the world’s expectations of them. Once they let us in the room, I held him as tight as I could while Adam began deep pressure. As a result our son returned to us and broke free from the frantic that held him captive.

One-of-a-kind Garrett, today, May 2020.

Sometimes I wish I couldn’t recall these memories so clearly. I wish I couldn’t feel the pain and fear so intensely. Instead I long to meditate on the moments of thanksgiving and relief that follow. The moments when I rejoice because my children are still alive and safe in my arms. But anxiety will do that to you. Your brain gets stuck. And without intentional mindfulness, prayer and keeping your eyes on the Lord, the creator and sustainer of your faith, it is easy to fall prey to the pain and forget the victories.

Me, May 2020.

I guess, in that way, we are not so different from the Israelites. They witnessed protection through the plagues on Egypt. They witnessed being delivered. Yet, when they were in the desert, out of fear, they questioned ever leaving.

My children are only 8, 6 and 4 and I know there is more to come. I know that I am still young in motherhood. But I know that I am not alone in these experiences either. There are so many mothers out there with so many stories to tell. And by what I can gather, none of us are immune to the fears and insecurities that motherhood brings.

I look back on the past 8 years of motherhood with so many emotions. I pray with my entire being that I am doing right by them. I ask for the grace of Jesus to cover all my mistakes along the way. I beg him to finish the work He has begun in me so that I may fulfill all that is asked of me.

The Lord has blessed me with 3 children, 2 with very dominant personality types (and husband too!) I however, am wired the opposite. I have always struggled to find my voice in every setting of my life. Be it out of fear of confrontation, desire to keep the peace or just plain insecurity, I can honestly say it took me about 34 years to find my voice. And it was a messy road. Full of mistakes. Irony of it all, the Lord used motherhood to help me with that.

Today I can proudly say, I am the mother of an incredible, passionate, and dedicated daughter who will make an amazing actress one day. She is an expert at “not breaking character” when she becomes one. She is also the elder sibling of two boys with extra needs. We already have seen the impact of this on her life and so desire to stay vigilant in our awareness of her needs.

I am also the mother of a brilliant, witty, fire cracker boy who without a doubt is going to change the world- as long as I can keep him alive!! He may be wired with extra challenges, and he “extra” pushes my buttons, but we long to help him have access to all that he needs, to be all that God has planned for him. In these early years it is very challenging to discern when it is SPD, ADHD, ODD, anxiety, versus when it is just 6 year old boy. But God has placed us with the honor and challenge of identifying the difference, because there is a difference. Recognizing it and responding appropriately can change the course of his life.

And I am the mother of a precious 4 year old boy who has captured my heart and turned my world upside down. This boy was a God-given surprise that turned this scheduled, instruction following mama into a co-sleeping, wrap me around your finger type in the blink of an eye. And I think that was God’s plan because the way Jackson was designed does not fit into a type. Jackson has Usher’s Syndrome. His hearing loss, speech delay and future vision loss requires my ability to be flexible, innovative and full of grace.

I often wrestle with the temptation to ask God why he has chosen me for this family. I often feel so inadequate, weak, and discouraged. I struggle with the exhaustion from feeling like I am giving my all, my best, and not making a difference. Do you?

But I have to battle the temptation. For the sake of my children. And trust, that the Lord gave me these little ones for a reason. And that He does not expect me to be perfect. In fact, He knows I cannot. And, He knows that He can. For “He said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me.” 2 Corinthians 12:9

And in His great mercy, he plants people in my life along the way, to demonstrate love, faith, courage and wisdom. He places others in our life to guide us and help us, like puzzle pieces working together to finish a masterpiece. I mean, it takes a village, right?

These truths enabled me to move our family of 5 overseas. And these truths allowed me to move us back.

And I will preach this to myself daily, if need be. Because God is worthy to be trusted. He is worthy to be praised. If He is worthy to take our sin upon the cross, sacrificing his life for us, then He is worthy to carry us through the life we live now. He is the one most worthy of our humility. Only then can HE extend His grace, so that we might taste the life He has set before us.

Things are not as they should be.

We were walking through a furniture store to pick out a piece for a family member. No big deal. Except for when I wandered off, looking at pieces of furniture, and the strangest thing happened. My chest felt tight. My heart felt uneasy. My brain was telling me, I have been here before. But being here again, is too soon.

At this moment, we were 1 month into being back in the U.S, but I could remember the day I was walking through the furniture store in India, picking out furniture for our new home, like it was yesterday. Picking out the furniture that was supposed to last us the next 3 years, at least. The same furniture we sold in two days, only 8 1/2 months after we moved in.

Fast forward to 3 months completed now, living in Central, NY, living with my parents and India has begun to fade… already.

When we first got to my parents house, all we had is what we brought with us to India. Which if you know anything about India’s climate, we were not prepared for NY’s winter. But for Christmas, at least I had something red. A red Kurta, the last Kurta that was purchased while we were in India.

Wearing a Kurta in upstate NY 3 weeks after departing India for good brought on all the feelings. One being, can I really get away with this attire here? But mostly, feelings of sorrow, pain, and confusion. The wounds from our abrupt departure, still raw, still not even fully addressed.

Come late January, all of the India souvenirs were mailed, all of the Kurtas packed away and picture albums old news. I have returned to the messy bun and athletic clothes, no more coffee made via Aeropress, back to the Keurig and fully hooked once more on Almond Joy coffee creamer. I guess I felt if I returned to all of my old -isms, and American comforts, did that mean our move to India didn’t really exist? Did all that the Lord has done in me, really happen?

It’s the seasons of uncertainty that are the perfect breeding grounds for doubt and believing the lies that are whispered over you. The lies that tell you you are a failure, you have let every down, you can’t hack it. All too familiar, these lies. Fortunately the familiarity of lies bring the familiarity of God.

I cling to HIM more than I ever have. I trust in HIM more than I ever have. I believe that I am a chosen, loved, redeemed child of God more than I ever have. All that the Lord has done in me is real. We did move our family of 5 to India, with significant purpose, hope and intentionality. It all did happen.

And yes, I have to remind myself of these truths every morning. I have to talk myself down from yelling at the Lord when I awake to each new day with the relentless reality that 3 months after rushing back to the US because Jackson needs cochlear implants, we are still no further along in the process than when we left. We still are living in my parents home, sharing their car and unsure of what the future holds.

Things are just, NOT as they should be. But then again, that truth is not new. That truth is the same truth that encourages me to cling to the hope of Jesus Christ, and the hope of heaven. The hope that Revelation 21:4 brings, “He will wipe every tear from their eyes, and there will be no more death or sorrow or crying or pain. All these things are gone forever.” One day, we will not have suffering or sickness, and grief will end. One day, Jackson will have hearing and vision as clear as day. One day, this mama will not battle her persistent opponent, anxiety. One day, Dad won’t stress about finances and providing for his family. One day, things will be as they should.

Until that day, God is gracious and merciful and loving and kind and ever present and always faithful. We just need to pay attention. I know this to be true because HE uses his people to remind us. He uses my parents daily to remind us. How they day in and day out, generously and without expectation give, host, support, counsel, and love our family. How my brother shares from the bottom of his heart how much it means to have me “home”. How my sister in law without hesitation watches our kiddos after school.

I also experience God’s nearness through the blessings that come in moments. Moments like being present for your Grandma’s 80th birthday. Moments like getting to see your niece’s classroom during open house night at school. Moments that come daily like experiencing our kids level of excitement as they share about each new day at their new school, and moments that come every couple weeks like witnessing Garrett’s sweet bond with my dad as they head off to Lowe’s and grab a soda and a hot dog from the outside vendor.

These moments are significant to me, as I have lived as long out of my hometown, home state as I have lived in. I have missed so much. While we were in India, I missed the passing of my Nana and her funeral. The pain I experienced missing that, creates a whole new appreciation for all the little things I am experiencing now.

Things are not as they should be. But we get glimpses.

Glimpses by way of suprise mail from dear friends and supporters who just want to offer us a card of encouragement and a gift. Glimpses when others go out of their way to show you how much they are praying for you, thinking about you, here for you. Glimpses come when your church offers their continued support financially and tangibly to help you through this season of uncertainty.

But do not be mislead. I have to pay attention to these people, these moments, these glimpses. I have to look for the blessings. And WHEN I don’t, because let’s be honest I AM HUMAN, then I get swallowed up in the reality, that things are not as they should be and I forget to hope for heaven. I forget to find my hope in Christ.

We are now post 4 cochlear specialist consultations and 4 different audiology tests, and we have landed in a place of uncertainty once more. We are encouraged to repeat testing that was done while we were overseas, to obtain certainty that his hearing loss has TRULY become severe enough for implantation (for insurance purposes). While we agree on the need for certainty, Jackson’s diagnosis of USHER’S SYNDROME is driving the ship. We need to get him the best access to hearing that we can, and that’s why we returned to the U.S, and ended our journey serving overseas.

What I know to be true, what I am finally accepting, is that I have 3 children, 2 with special needs, and I need some support. We needed support so much that we bypassed Florida and flew straight to Upstate, NY. We left tenants in our townhome, and all of our belongings in our storage unit to come straight to my parents home with only what we had from India.

And even in the midst of continued uncertainty and lack of conclusions, God is answering our need for support. And because of this support, I am even able to think outside the box these days. I am able to dream, analyze, consider.

In April 2018, I needed support, emotional support. I found it by way of essential oils. By the end of the year I grew to learn so much more about the life-giving support offered by these natural oils distilled from plants and I realized by sharing them I can actually help support others too!

It is humbling, to feel as if you always need help or support. When we moved to India we had great hopes of serving others in various ways. And we discovered, we just could not. Our kids needed more support than allowed for us to serve others. Humbling to say the least.

Lately though, I have come to embrace this truth. I am embracing the reality that God created our family unit just the way it is. And in this current season of life, these little people HE has gifted to us are our main job. We want to love and serve them with all that we can. He is gifting us the ability to do that right now. And HE is gifting me the ability to serve and support others right where I am. From my home, while my kids sit next to me, when I share about Young Living Essential Oils with others in hopes that this natural element can support a need, just like it has done for me. And all the while potentially providing my family with an extra income.

So here is our update. We are doing life with family, getting support, and waiting until God reveals HIS plan for Jackson. We are praying, the kids are going to school, Adam is reflecting on his past careers and exploring where HE can best use the gifts God gave him. I am still praying, and often in a Cry-Yell-Pray sort of way and I am officially going to start my Young Living Essential Oil Business. https://photos.app.goo.gl/YSsVAqmE4VEqMMsPA

And daily, sometimes hourly, often minute by minute, I am looking for the glimpses of life, that remind me of God’s promises.

Malaysia

So we are not in Nepal! Not sure if you all caught that at the end of the last blog. We rerouted from Indonesia to Malaysia on November 11th. Our plans changed for several reasons.

Our last week in Indonesia was pretty tough. We were all travel exhausted and the effects of constant transition were taking its toll on our family. I was down for the count, knocked out by something that we thought was dengue. Two blood tests later and I still do not know what I had, but the kids caught a version of it as well.

Picture this:

Hottest week to record in history in Makasar, Indonesia. Constant fevers making it impossible to leave the air conditioned bedroom of the house that we were staying in, that just happened to be located directly next to a mosque who blasted the call to prayer over a megaphone 5 times a day.

Talk about being in a dark spot.

More significantly, Jackson had a noticeable decline in hearing again so we knew we needed to get his hearing tested sooner than waiting until we returned to Thailand in December.

So we booked flights to Kuala Lumpur, Malaysia and checked into an airbnb which later would become 1 of 5 Airbnb’s over the course of our stay in KL. Oh yea, before getting to KL we had already stayed in 9 hotel/houses in 2 months time.

We knew that we would be living nomadic for our 3 month forced exit from India, but we averaged a new place every 5 days. Can you feel my pain????

On the bright side, we knew we were making the right decision for our family and we had an ABR (sedated hearing test) scheduled for Jackson at Gleneagles Hospital 2 days after arrival.

Garrett, Gracelyn and myself also had checkups and walked away with 3 prescriptions each. How does Adam avoid this? I think someone needs to create a vaccine from his DNA.

We spent the first 4 days in KL returning to the hospital. Ill explain why in a bit.

But we also spent our time in Malaysia walking through Chinatown to the Pavillion Mall, taking grab cars to Suria KLCC mall and outdoor playground, visiting the Petrosains twin towers, eating donuts, visiting indoor playgrounds, going to the movies and seeing all of the christmas decorations up all over town.

Not sure if I am the only one who has noticed. But it seems everywhere we have gone around the world, marvel characters seem to be there!

Thanksgiving came during our time in Malaysia. At first I did not want to celebrate. Too many expectations to meet or let down during such a transient time. But we made some friends back in Indonesia that happened to be in KL and they invited us to join them! I never expected to celebrate Thanksgiving, and see Christmas decorations everywhere here in Malaysia, but I was grateful for both.

Well, as for the results of Jackson’s hearing test, little did we know our small re-route from Nepal to Malaysia would bring about a major re-route by the end of the month.

We had suspected a decline in jacksons hearing but we didn’t know how significant. Jackson’s hearing is now at a severe hearing loss level. This makes 4 declines total in his 4 years of life.

At this point we have been told that it is time to consider cochlear implants.

Back when Jackson first received his hearing aids we attended a support group for families of children with hearing loss. Many of the children in the group that were Jackson’s age already had cochlear implants. A representative from cochlear came and spoke to the group. I felt compelled to ask questions and take notes, as if this was an inevitable part of our future.

When we found out Jackson has Ushers Syndrome type 2, we were told to check his hearing every 3 months due to his rate of decline, even though ushers type 2 is not typical of progressive decline.

I just had a feeling we were headed this way.

With Ushers there is inevitable vision loss at varying degrees making it even more important to stabilize hearing.

So here we are now, almost 1 year since he received his hearing aids and we find ourselves spending the majority of our time scrolling websites about cochlear implants and discussing possibilities for surgery.

After considerable research and counsel from his audiologist in orlando, we know now that he is a candidate for cochlear implants, that he has maxed out his current hearing aid capability, that his hearing has declined roughly every 3-6 months and dropping and that the window for speech and language development is closing rapidly. Because of this, after great prayer we have decided it is time to return to the U.S and begin the process of pursuing cochlear implants.

Before we left for India we knew that he had hearing loss caused by Usher’s syndrome. At the time, we felt that we had everything we needed to care for him well even in india. We did not expect two declines in hearing while overseas.

It is clear now that we do not have all we need to care for him and our family unit well and thus we will be headed to upstate NY where my extended family is while we pursue cochlear implants for Jackson. During this time we will wait on the Lord to guide our next steps.

Being rerouted is hard. Having to wait is hard. Not understanding is hard. And trying to make sense of it all is exhausting.

Our journey has been one with setbacks and times of riding the wave, it has held changes in plans, open doors and closed ones.

Through it all we have tried to rest in the things we know to be true. The things true of ourselves, our needs, our abilities and limitations. Things we know to be true for the season we are in. And always the truth of who Jesus is and who we are as believers and followers of Christ. He is good, faithful and sovereign, no matter what. “He is our refuge and our strength, an ever present help in times of trouble.” Psalm 46:1

It is not our circumstances that makes this true, it’s the calm we experience in the presence of our circumstances. The calm that only comes from the Holy Spirit. The “peace that transcends all understanding.”

And with that, all we can do is the next right thing.

Yes, you heard me. I just quoted Anna from Frozen 2. But in all fairness, we saw the movie twice while here in KL and those songs are now engrained in my mind. And confess, I may have teared up during that scene.

So the next right thing for us looks like heading back to India, packing our bags and heading to the US.

Please pray for our family as we try to repack and transition once more.

Week 9. Perspective is everything.

“Finally, brothers and sisters, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable-if anything is excellent or praiseworthy-think about such things.” Philippians 4:8

I was ready for monday. I am NEVER ready for monday. Maybe it was the pool party we went to on sunday that left me feeling refreshed and ready for the week. It was awesome. Held at what felt like an oasis in the middle of the city with several other expats. A pool to beat the heat, other kids for our kids to play with, food and a welcome influx of advice on things like grocery shopping, business, medical care, travel, education etc…

And we had a victory! It is always good to start your week with a victory. This was a win over ear infections. I read that mineral oil in the ear prior to swimming can help prevent ear infections. After the doozy of infections we had the last time we swam in a pool here, I was all for it. I can only imagine how I appeared. Me, carrying a small tupperware of liquid in a ziplock bag. However, if I put it in my bag, the coconut oil would have made a mess! I am convinced there is NO container in the world that coconut oil doesn’t sneak out of. I just kept imaging the locals thinking, “strange american.”

The week began with Garrett losing his second tooth and since the Indian tooth fairy was already “planning” on coming, Gracelyn decided to finally trade in her 3 teeth she had saved from her teeth extraction in Florida. Yes. She saved three teeth. And Yes, they came all the way to India. But kudos to her. She scored 30 rupees. My kids are learning to save!! Although, The “tooth fairy” must be careful not to overgift, else we will end up with a pet dog since that is what they are saving for!

One of several notes that Gracelyn left for the tooth fairy.

This week we also had two more yoga classes. I was a bit apprehensive for the next session considering how sore I was over the weekend. We so enjoy our yoga time though because we have an incredible instructor who is also a friend. Gracelyn is convinced that she is ready for the next level, where I am gladly accepting the modified positions.

If I am evaluating the week in terms of wins and losses, UBER was a total loss this week. We have not bought a vehicle yet, and taking uber is currently more cost effective. But every time I requested a car this week, the car would just sit there on my app, not moving.

10 minutes later, still waiting and overheated and frustrated, I would cancel my uber. They would still charge me! And then I would have to hail down a tuk tuk. Sounds easy except for the fact that most of my rides are brief and worth 50 rupees. A non-uber driver would charge me 150 rupees because I am a foreigner. I argued with one driver that I would absolutely not pay more than 50 and I ended up having to get out and look for another!!! In fact, I was so irritated by it that I asked my language instructor how to let the drivers know not to mess with me! I learned how to say, “Main Bevakooph nahin hoon”, aka- “I am not stupid.”

Another win this week was getting my Kurtas back! Remember how I said I sent them out to be pressed and then did not hear back for over 10 days? Well, no foul play! She was at a wedding! Weddings are a HUGE deal here. As soon as she got back, I got my Kurtas back.

In the arena of evaluating wins and losses, the next couple updates depend on the perspective. If you are viewing from the lens of health trouble equals loss, then we had some losses this week. But I am viewing from the lens of whether or not the healthcare we need exists here. So, from that perspective, we had some major wins! That does not mean I did not experience bouts of anxiety, frustration, sadness and fatigue- because I did, without a doubt.

But long story short, We found out that Jackson has Bilateral sensorineural hearing loss in December 2018. In January 2019 Jackson got hearing aids fitted. In March 2019, after months of tests we found out that Jackson has Ushers Syndrome Type 2. This is a genetic condition that causes hearing loss and eventual vision loss. This is the short version of our journey with Jackson’s hearing loss.

Here in India, we knew we would have to establish care and check his hearing every 3 months. After a couple ear infections and an increasingly louder 3 year old, we suspected his hearing was changing. We were so grateful to find an ENT and an audiologist within 5 minutes from our home! Remember, perspective.

I had a folder full of reports on all of Jackson’s medical history and I confidently strode into the audiology office ready to get a hearing check up. Soon I was to find out that there was too much room for error between the audiology test he had in the U.S, and the one here. This meant, that in order to get an accurate reading on his current hearing level he would need to be put to sleep and have another ABR test done. As much as I was freaking out inside, I knew we had to get this done to see if his hearing had declined and then have his hearing aids reset.

“Mam? Give this medicine to your son and when he is asleep we will begin the test.”

HAHAHHAHAHAHAHHA. You want me to give Jackson medicine, without any nutella or anything? Oh boy. After a few attempts to get the medicine down his throat in the office we were asked to take him outside and try again. I am guessing because his gag reflex was too much for the floor and the other patients.

Fast forward a few hours later, we had given up. Mom and Dad-0, Jackson-1. We got into the tuk tuk, hot, exhausted and defeated. Five minutes later when we arrived home, Jackson was asleep in my arms! You bet we turned right around and went back to the doctors office. I felt like a war hero carrying my 43lb son up 4 flights of stairs in the middle of 105 degree heat to get him back to the Doctor with enough time for her to conduct the test before he awakened.

An hour later we had the results. 24 hours later we were discussing them in her office. 2 hours later his hearing aids were reset and another hour later we were on our way home. Notice I kept saying, hour later?….. So if you can imagine all the time in between, with a 3 year old who has no volume control, refuses to do what anyone tells him and his favorite activity is to pretend to be a dinosaur. I was toast. Cooked. Fried.

BUT! Perspective. My Son could hear! Amen and Amen and Amen.