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.
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.