– A continuation of “Because every mama needs someone who gets “it” and someone who wants to.”
There is nothing like those moments when you are talking with a friend and you share a struggle that you and your child are having and she says,
“Oh girl- SAME!!!”
Friend who gets “it.”
And then to make it even better, she either tells you a story about her child that is literally identical to yours, OR when you describe how you feel, what you’ve tried, or what else they (your special needs child) has done, she basically completes your sentences.
I have a friend who has been completing my sentences since I was pregnant with my first.
See, coincidentally we have literally been walking the same path. Our first born children were born within weeks of one another. They are both girls. Our following 2 children, both boys and spanning the same ages. We both had husbands in ministry, went from working to stay-at-home moms, lived in one of the most expensive suburbs of DC on a one-income salary and then moved away from Northern Virginia for our husband’s jobs.
Every time we catch up on the phone we pick up where we left off, as if we had seen each other yesterday.
So when we both started to recognize some neuro-divergent behaviors in our children, it almost made sense.
Because life with neuro-divergent children does everything but make sense.
But there is something so comforting about sharing what your life is like with another, and it totally makes sense to them.
It makes sense to them when you say,
“It feels like we just can’t leave the house.”
“Other moms just look at me like we’re crazy.”
“I just don’t have capacity for anything else.”
Friend who gets “it.”
The need for connection and a desire to be understood is a natural desire. One that is so imperative for the health of anyone raising children in this world.
When they say it takes a village, it’s not just because we all need an extra hand (especially if the kids outnumber the adults) but because every mom needs a little reassurance!
For me, being able to connect with a mom who can personally relate to having a high needs child and all that it encompasses is so very necessary.
She understands when I talk about how hard it is to be in a community group at church because of the needs of our kids.
She understands when I share about how I wish our family could just feel “functional” for one day.
She understands when I say, I have no margin for anything else.
This kind of connection is so important for the mental health of moms, especially moms of children with high needs. This kind of connection provides validation, affirmation, encouragement and hope.
Every mother’s life holds differences and similarities to the next and I think it’s extremely valuable to have a life that is enriched by the perspectives and methods of both.
If you feel alone in your motherhood journey, I hope you won’t stay there.
Pray for the Lord to place that mama in your life that HE knows you need. He will provide. And do some digging.
When we came back from living overseas, we did not return to the home that we we left in Florida, we went instead to NY in an effort to live near family because I was coming to the realization that for me- having 3 young children, 2 of them with special needs, was going to require a village.
So when that attempt did not work out and we ended up moving back to Florida, I’ll never forget the advice I was given from a counselor who knew all that we had been through and all that was to come. He said, “Leave no stone unturned in an effort to find the help that you need for your family to thrive.”
That advice dove deep into my heart and mind and has been the energy that has provided me with perseverance when I have grown tired and weary in the face of opposition.
In this special needs life, there is great opposition. Some ignorant and some intentional. I have had to battle and advocate and be “the squeaky wheel that gets the oil” more times than I have felt comfortable. I have battled my own thoughts and the disagreement and disapproval of others. I have fought for 504’s, IEP’s, accommodations, explanations, appealed denied insurance claims, argued for the approval of services, jumped through hoops and over red tape all without an official job title even though more days than not it has felt like a full-time job.
But I have not done it without the support of other incredible women. From friends, to moms, to other “special needs mama’s,” to therapists, to doctors, psychologists and counselors. And above all, the Lord. He who made me in my mother’s womb, and made my children in mine. He who knows all of my days past and present, and the number of hairs on my head. He who has never forsaken me, loves me unconditionally, and teaches me how to do the same for my children.
So Mama- leave no stone unturned, find your people, and look up to the Lord- he sees you and hears you.
The room was pitch black, minus the dull glow from the star stickers on the ceiling above Garrett’s bed. The sound of pouring rain coming from the white noise app on the ipad was at max volume, but it still couldn’t drown out the tapping and clicking noises that each child was creating as they waited for sleep to wash over them. Every “tap” and “click” felt like nails on a chalkboard as my stomach tensed at their sound, over and over again. At this point, my mind and body were convinced that one more request, excuse or interruption to the bedtime efforts meant this day would never end.
This wasn’t a new experience. In fact, it was typical. So in all reality my brain knew that the boys would inevitably fall asleep and the day too would come to its end. But fatigue- be it emotional, physical or mental, did not care what my brain “should” know to be true. Fatigue doesn’t care how much I actually love these kiddos and cherish the cuddles. Fatigue pays no mind to the fact that once they fall asleep, my heart will leap a little as I peek at their peaceful faces. No. Fatigue only wants to hijack the brain with feelings of desperation.
So as I stare at the stars on the ceiling, and try to remain perfectly still in hopes that Jackson will forget I am there and fall asleep, my fatigue-hijacked mind keeps anticipating the glass of wine and TV show that lies ahead. Or alternatively (depending on the type of day I had) my body aches for the incredible feeling of a shower and crawling under the covers of my own bed that feels like the finish line I have been racing to cross for decades.
Then, it happens. Stillness and slow breathing. They are asleep! I made it! After what felt like an eternity, I am finally alone and can rest. No more requests, whining, begging, arguing, serving, running, redirecting, cleaning, mediating and just pain loudness. I have a couple solid hours to myself, if I can keep my eyes open. But then, upon finally making it to the shower, instead of basking in my solitude, my brain immediately reflects and condemns. I begin to ask myself questions like, “Did bedtime really take over an hour? Why does it take them so long to fall asleep? Why do I have to be there? Will they ever grow out of this? Was I even nice to be around? Why am I so angry? Why can’t I just be patient, and enduring?” And I pray, “Lord, help them not remember me like this, exhausted, irritable and quick-tempered.”
I remember the first couple years of motherhood, a veteran mom told me, “You are going to make mistakes as a parent, it is impossible not to. But thank God we can ask for HIS mercy to wash our mistakes away and HIS grace to fill in the gap.” She encouraged me not to sit in self-condemnation, but instead bring it all to the Lord. So every night, sometimes every day, every hour, every moment, I bring it all to the Lord. Because I am frustrated. I am exhausted. I am weary. I am tired of making the same mistakes, I am tired of how hard it is. I want to be stronger, more patient, more disciplined now. Because every moment that I am not, is another opportunity to blame myself for the misbehaviors of my children. Because that’s what I am tempted to do, all day long. Blame myself.
In the early years, it was less of my own and more of others playing the blaming and shaming game. The all too often, ever present answer to a mama’s cry for help was, “Oh, you JUST need to sleep train….you JUST need to breastfeed… you need to bottle feed so someone else can feed them…you need to expect immediate obedience with a happy heart on the first try… you need to spank… you need to stop letting them control you…you need to get rid of gluten and dairy… you need to get rid of TV and devices…YOU need to… you NEED to… you need TO…. and the list goes on and on.
I’m not sure if the “mom wars” are still as active now, if mama’s have become more supportive of each other’s varying styles, or if I have gotten better at tuning them out, but my battle these days are more of my own condemnation than the condemnation of others. For so many years, I tried to avoid making mistakes. I wouldn’t make decisions, or actions without doing my research to ensure that the success rate was high. I couldn’t offer myself the grace necessary to make a mistake and learn from it. It was too costly, so I had to make sure to get it right the first time.
That is, until a series of life-altering events happened that showed me just how little control I have. In Fall 2012, our firstborn ate her first peanut butter and jelly sandwich the day after her first birthday only to discover she had a life threatening peanut allergy. In Fall 2016 at age 33, I found out that all these years I had an undiagnosed anxiety disorder. And again in 2018 when our youngest son was 3, we learned that he had bilateral sensorineural hearing loss caused by a genetic syndrome called Usher’s Syndrome. And again, in 2019 at the age of 6 when we learned that our middle son had significant ADHD and Anxiety that required medication. Those are a lot of things to find out down the road. A lot of information received later than I would have liked. When you do not have all the information necessary to make all the right choices, you are given a lot of opportunity to make mistakes and get it wrong.
Let’s be honest, in life do we ever have all of the necessary information to make all the right choices? No. But we can do our best with what we have and never stop learning. We can be humble and offer ourselves the grace to face our mistakes so that we can grow. And if as an adult- I am still learning to do this, how much more can I offer this to my children who have much less years of mistakes to learn from.
Here I am, 38 and still making some of the same mistakes. Still struggling not to condemn myself.
Our middle son has been facing many struggles as a result of his disorders. The decision of whether or not to add anxiety medicine in addition to his ADHD medicine was a difficult decision to make. We had all of the necessary data to suggest that this was the next best move.
But I couldn’t get past myself.
And all the voices and all of the questions that have raced through my head before, came flooding back.
“Are you really going to put him on another medicine? He’s only 7.” … “Why don’t you strip his diet of all gluten and dairy?”… “Maybe he’s just a boy being a boy and you are not disciplining him enough?” … “Maybe you need to increase your anxiety medicine before you put him on another one.”… “Why can’t you just homeschool him?”… “Maybe all of his behaviors and struggles are because you are too weak.” …
So many voices. My own, and others.
Sometimes it feels as if the voices can consume me. Very similar to the actual noise in our household. It can be so loud, so overwhelming. When you have a 5- year old who is hard-of-hearing and still learning how to moderate his voice, and a 7-year old with ADHD who has one volume level- loud. And also a 9-year old who unfortunately learned that in order to be heard she has to push through and talk over the noise, and 2 parents who sometimes have to do the same in order to communicate who is picking the kids up from school, it feels like I am a thermometer about to burst. You know the cartoon thermometer? I can feel the red liquid rising quickly to the top of me about to burst, and I literally have to take myself to the front porch, shut the door and the noise behind me and breathe….or else.
So much noise, so many voices. I find myself preferring silence whenever I get the chance. When I go for a walk, a run, a bike ride or even in the car, I choose the quiet. I have to seek out the quiet. Not just to give my ears a rest. I desperately need to hear HIS voice. In the quiet, I can pray and ask for HIS voice to speak to me what is true. And I am reminded of what I know to be true about HIM, about myself, and about my circumstances. I am reminded that we waited until the doctor said it was OK to introduce peanut butter. I am reminded that we had Jackson in speech therapy for 2 years before they diagnosed his hearing loss. I am reminded that we sought council and nurtured Garrett’s sensory processing disorder as best as we could and even removed gluten from his diet before we went the medicinal route. I remember how we use essential oils to support our minds and body in a natural way. I remember that we tried many different ADHD medicines, and had him tested for celiac as we discerned his need for anxiety medication. And I remember how we have prayed every step of the way.
And in the silence, after they have fallen asleep, after I have snuggled with each of them and endured their restlessness and repetitive “clicks” and “taps”, I am reminded that I am FOR them. I love them so stinkin’ much.
I am frustrated, exhausted and weary BECAUSE I love them so stinkin’ much. I am frustrated and exhausted and weary BECAUSE I make mistakes, and I am not gonna stop trying to be better. I am frustrated and exhausted and weary BECAUSE they keep making mistakes, and often drive me nuts, but I am not gonna stop trying to help them grow. And I am frustrated, exhausted and weary because I have 3 children under the age of 9, two who are neuro- diverse, and motherhood in general is hard! To quote my mom, “It is the hardest job you’ll ever love.”
I had to remind my son the other day, “I am for you. You are MY son, and I am on YOUR side.” I said it with a bit of intensity because it had been one-too many tattle-tales from the same child. One who is quick to blame Garrett, and never takes responsibility for their part. I had had enough. I respectfully acknowledged the complaint, addressed the behavior and what needs to stop or start. But after, when it was just us, I made sure he knew I was for him.
And I will make sure to offer myself the same reassurance. Because my God is always with me, and He is always for me. He gives me the grace to forgive myself, and the strength to try again. He sees me. He knows my struggle. He sees my children, and He knows all of our weaknesses. And when the voices in my head start chiming, whether it be from others, or my own, I will remember- “If God is for us, who can ever be against us?” Romans 8:31. And all of Romans 8 for that matter because this entire passage of scripture reminds us that there is no condemnation for those who belong to Jesus Christ. It reminds us that Jesus frees us from the power of sin, and His Holy Spirit affirms who we are as children of God. That HE helps us in our weakness and helps us to pray and that NOTHING can separate us from HIS love. And when I am feeling hopeless, and do not have the strength to try again, I can remember HIS perfect love for us and how many times he stood back up with that cross on his back- for us. And there is no amount of fatigue that God’s love can’t conquer.
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.
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.
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.