Be still, and know that I am God -Psalm 46:10
I honestly don’t know where to begin this past week.
My head is still spinning because it is all still very fresh and we’re reeling a bit. Our wonderful little man has been doing so well; his PT and OT and my therapy work with him at home have been going wonderfully and I’m so proud of the progress little man makes every day, and beaming his wonderful smile all the way through the struggle and pain of muscles that are stiff and won’t respond.
For the first four months of his life our little man didn’t even make eye contact. He would just stare at the ceiling, unblinking. He would scream for hours, and would get overstimulated very quickly. The only way to calm him was to swaddle him and leave him alone in a dark room with no noise and no humans. He would calm himself down to the point he would either fall asleep or I could re-enter the room and he would be ready to go again.
Today you wouldn’t even recognize him from the little preemie we brought home from the NICU. He smiles and coos and laughs, and tries to flirt with everyone he sees. He vary rarely becomes overstimulated anymore; I don’t even remember the last time he had one of his fits. He loves when I sing to him, loves to snuggle, and adores watching Jamison. He is confident, happy, healthy and growing so fast!
In fact, he was making such good progress that I thought this was a temporary phase of life, that if we kept going he would eventually heal.
That all disappeared when the pediatric neurologist walked me through his charts and medical history. I nodded along, so grateful to finally have someone to walk me through the twenty syllable medical terminology that might as well have been a different language to me. I thought I was understanding it all until she wrapped it up by saying, “So this means he has Cerebral Palsy.”
My emotions that day went from disappointment to sadness to anger to grief to resolute to optimistic to peaceful, but it was a full day to process each step of his diagnosis.
When the doctor spoke my mind immediately went to wheelchair, slack jawed and non verbal because, hello, I’m a mom and that’s my (foster) son and of course my mind is going to go there. That’s also the only exposure I’ve head to CP; before this week I didn’t know much about it. I since think I’ve earned the equivalent of a master’s degree in the field of CP based on the amount of intense research I’ve conducted in the past 6 days, but that’s one of the ways I tackle life; when in doubt, read read read.
I asked if there was a range of CP, and the doctor assured me there was. Worst case scenario, he could end up in a wheelchair with no facial movements and decreased ability to talk. But there is a wide range, and he could best case scenario end up needed special shoes or braces but otherwise have a normal, healthy life. Even best case scenario would still require a lifetime of physical and occupational therapies, doctor visits, scans, handicap parking, special equipment, etc.
I kept nonchalant in the doctor’s office as we scheduled MRIs and got court orders rolling to sedate the little man and continue with intensive neurological work, but when I got to the car and back on the highway home I cried. I grieved for the life that every parent wants for their child, and realizing that while I will give my life to make sure he has the best chance of a full life, he will still have struggles every day that I wouldn’t wish for him.
I called Matt and briefly updated him on the appointment. I would be lying if I said Matt and I are perfect. The truth is we're very flawed. I admit it; we both got a little mad at the people in our little man’s life that gave him a life long set of challenges. It does no good, and going forward we don’t blame anyone or are angry, but there was a good hour where I was just ticked. I wanted to blame someone for hurting this amazing baby.
I called both my social worker and his county social worker, and they were so sweet. I didn’t cry on the phone, but they both were so supportive and said they would pray for us, and got right to work sending e-mails and putting together paperwork to change his file and keep the medical procedures flowing smoothly. I called a few friends and family members who knew we were heading into this appointment expecting good news and instead were hit with this.
I gave Jamison some toys to play with while we drove the one and a half hour home up back into the mountains and I completely surrendered all of us to God. I prayed for a miracle, and thanked him for how well our little man is doing. I thanked him over and over for sending us to our little guy and for giving that boy the best chance in the world to conquer life and get the best resources and help the world can offer. I asked him for strength and for healing and for peace, and I was completely zen. I knew in my heart God would give us whatever resources, energy, and skills we would need to navigate life together as a family.
As I pulled in the driveway I looked up and saw our house God had blessed us with over a year ago, 9 months before our little man was even born. Our house is actually the old post office of Floriston, and because it was a government building it has a ramp leading up to the front door to make it handicap accessible. The man who sold it to us was himself a disabled veteran, which means all of the bathrooms in our house are handicap accessible as well. I obviously am going forward expecting our little man to walk and working toward that goal, but how amazing is it that even if he does need a wheelchair or walker or support along his journey we are already living in a home that is perfectly suited to disabilities? God provides!
The rest of the afternoon and evening we didn't do much. Honestly I just put on a movie for the kids and we all snuggled together on the couch, Jamison, little man and I. Our couch is a giant sectional but we all curled up together in the corner and I just rested in the presence of my kids and in the comfort of home. I felt emotionally drained and tired and worn out, but completely at peace.
Almost a week later that’s still how we feel. Matt and I have talked more in depth with friends, met with more doctors, and researched different therapies that we can and will use throughout the next 18 years and probably beyond. Everyone has been so supportive, and I know I’ve been so dull to be around. Right now my head can only think about one thing; it’s like my entire mind is wrapped up around the phrase CEREBRAL PALSY. I know I’ll delve out into the world again, but right now I’m adjusting to this and learning everything I can. Our wonderful church "framily" has been incredibly understanding with us wanting to verbally process, and I’m so grateful to each and every mom friend of mine for listening to more detail than they probably care to hear about the little man’s diagnosis.
Thank you to each and every one of you for your prayers, for your love and encouragement in person, over the phone, over facebook and e-mail; you guys are amazing. Thank you for the gifts of time and energy and serving our family- if we do anything great in this life it’s because we don’t do it alone. Every step forward is a huge group effort and I am so so so grateful for you all. God is using you even if you don’t feel like it or see it. I promise.
In some ways, it’s been a relief to actually have a diagnosis. When I’m filling out forms that ask for medical history, instead of writing a paragraph addressing his vision, hearing, neurological, hemorrhaging, tonal muscle etc issues I just write “cerebral palsy” now because all of that literally is cerebral palsy. I kind of wonder why I didn’t see that it all connected sooner. It’s much easier to explain to people with one phrase rather than listing off all of his medical issues, and so I’m actually very grateful to have an answer to our questions! And to have a diagnosis so early in his development, which hopefully gives us as much time as possible to help his symptoms not develop to a worse extent.
And every day in the middle of it, little man’s infectious smile lights up my world. I never thought I’d be a special needs mom, but I am. And if it means I get to be our little man’s mom, I’m honored and embracing the title and life that goes with it wholeheartedly. He is such a flirt and loves to grin and reach for everyone who looks his way. I love him with my whole heart. I’m so proud of him.
I’m proud of my hubby who admitted that if someone had asked us if we could take a kid with cerebral palsy he would have said no way, we have too much on our plate, already have special needs people in our extended family, etc. Yet when we found out about our little man, Matt didn’t even pause or bat an eye; he just accepted him as our son and that we will of course do whatever he needs. It also goes to show that we can always do more than we think we can, and God knows so much better than us what we are capable of doing and what challenge we can rise to with his strength and not our own.
It’s not fun to hear your kiddo that you love with your whole being has permanent brain damage. But it is such an amazing honor to have the responsibility to care and love and pour into someone that you love with everything you’ve got.
And oh man, do we love this little man. I get to be this guy’s mom. What an honor. What a privilege to be right here, helping and pointing to Christ and hopefully mimicking him all the way.
And what person doesn’t have struggles? Jamison has her own issues, which mainly right now revolve around her being 4, which apparently is synonymous with being the world’s most over dramatic person in existence. She also has dyspraxia, which is also known as “”Clumsy Child Syndrome” (I’m not making this up. She pratfalls like a Charlie Chaplin film 9 times a day and we just barely notice it now. She’ll go sprawling on the concrete and every other parent looks up, horrified, while we keep walking. She falls so much if I got upset every time she scraped her knee I’d be an exhausted mess. It’s just not worth it. And it’s kind of funny). Matt has Crohns disease. I’ve got- ok I’m actually pretty boring and vanilla but somebody’s gotta take care of this hot mess we got rolling around here, amiright? Let’s just say welcome to the club, little man. You fit right in.
Peace I leave with you; my peace I give you. I do not give to you as the world gives. Do not let your hearts be troubled and do not be afraid. -John 14:27