This week has been filled with so many moments of gratitude.
Over the last seven days God has gifted me with ”His eyes” and the ability to see the many miracles we have been given. I am thankful for a God that knows when I need these snapshots!
I am a member of a parental support group for Levi’s primary diagnosis (idiopathic bilateral vocal cord paralysis). This week I read post after post about the many significant issues that come hand in hand with this diagnosis…
Many children with BVCP cannot speak. Many cannot eat safely. And many have trachs and are continuing to attempt different surgeries to get the trach removed.
Scientifically the fact that Levi can breathe, eat, and speak with paralyzed vocal cords is absolutely a miracle. When we signed consent for BIG surgery at 4 months old we did so knowing that we were choosing trach free breathing in exchange for his voice and his ability to eat. My heart mourned that I would never be able to hear either of my children clearly say mama. The fact that he has been given all of those functions is such a special gift from God. And it is so illogic from a medical stand point that we can’t deny the miracle.
I watched today as he polished off two chicken fingers with ease and I felt such gratitude deep within the pit of my stomach.
Another reflection moment came at horse therapy as I watched Levi swiftly climb the fence to get a better look at Malachi on his horse. As I watched him navigate the fence with such ease I glanced back to those many moments in therapy simply trying to get Levi to stand up. I remember choking back tears as I watched him fight so hard to do simple things.
I think that is something special needs moms don’t talk about as often as we should…the emotional pendulum. We can find such pride in a single moment and almost immediately it can become a moment of sadness. Our frame of reference for success is such a different one than typical parents.
This week I was cleaning the bathroom and had turned on a movie for the boys. I could hear some faint commotion and I went out to investigate only to find that Malachi and Levi were not in the living room where I had left them. Levi had pushed Malachi’s chair into the master bedroom and when I questioned him on it Levi’s response was a very innocent: ”Me just wanted to hang out with Malachi.”
Malachi clearly loved the field trip and I made sure Levi knew he needed to get mommy’s help transporting Malachi next time. But their moment of just hanging out as brothers really touched my heart and I became overwhelmed with gratitude that these two boys have the bond that they do.
Malachi’s tummy aches have been keeping him up this week and we are still struggling to find a solution that allows him to rest at night and get good sleep. We meet with lots of specialists in the next two weeks and I am hoping one of them may have insight on keeping Malachi comfortable.
Speaking of specialists, Levi went to the eye doctor this week and the doctor said he is worried that Levi may have optic nerve damage in BOTH eyes now from his oxygen deprivation early on, not just the left one. There is a test that we can do to measure the thickness of the cortical nerve to see how much damage has been done but Levi is not cooperative enough at this age to do it.
At this point I have just had to give the issue over to God. There is nothing that can be done to reverse the damage if there is some inside this nerve, so I am choosing to not focus on that new information. This is an issue that glasses or a prescription cannot help so we are continuing to attempt the glasses to protect his ”better” eye from any potential danger in the world.
Every week in our lives has hard things hidden throughout. We have reality checks, disappointments, and lots and lots of unknowns. But even amidst the chaos there are so many moments of pure joy, that can only be credited to God.
The joy of me and my two amazing boys piled on the couch, giggling at a new episode of Peppa pig.
The joy of my four year old asking for a turkey sandwich cut into triangles.
The joy of Malachi giggling uncontrollably because he intentionally peed on me. And the follow up giggles from Levi when he sees what Malachi had done.
We travel a hard road full of emotions, but I am so thankful for the variety.
Psalm 1:3 ”3 He will be like a tree firmly planted by streams of water, which yields its fruit in its season and its leaf does not wither; and in whatever he does, he prospers.”
What beautiful imagery! Our family has been planted- placed by God- in a very thought out place next to streams of life giving water. Sometimes feeling ”planted” can create a fight or flight in me.
But I believe that the more we embrace our planting from the Lord the more deeply our roots dig into the soil and drink from the Living Water.
The fruit will continue to yield in its season, and sometimes we won’t always see the growth that we long to see. But our season of growth is coming. And laying eyes on that fruit reminds us that “He who began a good work in you will carry it on to completion until the day of Christ Jesus.” (Philippians 1:6)