Looking Back...

Dear Jayce,

Well, I’ve done it. After nearly 21 months (I cannot believe you are almost 2) I went back and read every single post I’ve ever written about you and our journey. Most of it was happy and jovial, inspirational even. I suppose I tried to do that so as not to reveal just how hard those first few months, ok, that first entire year really was. Those posts bring me right back to that moment. Right back to those feelings of fear and uncertainty.

 

I suppose this reflection was prompted by my never ending quest to learn more about Congenital Cytomegalovirus and get connected. I recently found another cCMV Mama on facebook who just celebrated her adorable son’s first birthday. That first year, it’s so hard. Reading all of her posts is like reliving all that we went through with you.

You spent 18 days in the NICU, which meant countless IV insertions, a feeding tube, jaundice, stomach problems due to your prematurity, which I obsessed over by checking your weight gain every morning and night to see how much progress you’d made. Your lowest weight was 3 lbs 14 oz and you came home at 4 lbs 12 oz… Looking back, I cannot believe how small you actually were!

You also endured 8 blood platelet transfusions while in the NICU. Not to mention, eye exams to check for blindness, 2 failed hearing tests (I knew in my heart that you were deaf long before it was ever said out loud), 2 cranial ultrasounds that didn’t reveal calcifications on your brain, but did reveal an intraventricular hemorrhage that would require regular visits from your Neurosurgeon.

The second IV Insertion placed in your skull.

We had many other visitors during those 18 days as well… Infectious Disease doctors who had you quarantined from other NICU babies, their visitors, and even NICU nurses who were of child-bearing age because your symptoms could compromise their overall health. You met Occupational Therapists, Physical Therapists, and a Social Worker who explained the programs you would qualify for because of your diagnosis. I knew it was bad when I was told that my child will not have to be “evaluated” by Birth to Three services, but that he automatically qualified given his “diagnosis” and his high risk for “severe developmental disabilities”.

And then it finally came… the end of your NICU stay. The day before we were scheduled to bring you home, I met with a neonatologist, a young guy who I really liked. He wasn’t intimidating like the others were. He sat on a chair in front of me and told me it was time. You were ready… But, were we, I wondered?

I will never forget him going over some discharge information. Our “follow-up” appointments… Something I guess I never really thought about until that very minute. You see, I was going to be taking you home, but our journey was very, very far from over. He had written me a list and said “these are the folks who will be contacting you in the next few days and if you don’t hear from them, I wrote down their contact information for you”: Opthamology, Audiology, Otolaryngolgy, Neuro Surgery, Infectious Disease, and Urology.

He also reminded me that you were to be seen weekly for a CBC test (blood draw). These tests would monitor how your body was responding to the Anti-Viral medication that was “treating” the cCMV and to measure your platelet levels, which they had tried to get moving in the right direction during your stay in the NICU.  At these weekly visits, your doctor would also monitor your weight gain closely and your head circumference, which they had been doing twice daily in the NICU. It terrified me. You see, when checking your head circumference, I always knew it was critical. If your head was measuring large (growing too quickly), that could mean hydrocephalus, excess bleeding on the brain or fluid that is putting pressure on your brain ~ not good! If it wasn’t growing enough, that could mean microcephaly and a small brain can mean extreme developmental delay and mental retardation. I couldn’t breathe. I was so scared. Always. I was literally a walking zombie.

You were coming home, but it wasn’t over. Everything wasn’t fine. It was really just beginning.

And that next day, March 12, 2012 (the day my doctor had planned to induce you, had I’d made it to over 39 weeks) was the worst day of my life. I couldn’t do it. I couldn’t bring you home. I wasn’t ready. I was scared. It was too much. It wasn’t how it was supposed to be. My life as I knew it was over. Forever.

I laid on the floor for 3 straight hours. I couldn’t force myself to stand up, walk out my door, get in the car and come get you. I just couldn’t, but I had to. Your father reminded me of that as he literally peeled my off the bathroom floor while I sobbed.

And so it began…

Looking back, those first few months are really a blur. We did it all. Every week we visited your doctor and every week you gained weight and aced that dreaded head circumference measurement. This pleased your Neuro Surgeon who, after an MRI, decided to cut your visits back to every 6 months until your second birthday. Your Grade 3 bleed was healing itself and the CMV had not caused any calcifications to form on your brain, which meant no severe brain damage, but still not definitive answers for your future. You met with an audiologist who confirmed your hearing loss at 7 weeks old who then introduced us to our amazing Dr. Heatley, who would later perform your cochlear implant surgery. You met with an opthamologist who scared us once by noticing a small scar behind your retina, but after returning 4 weeks later it was gone. Your vision was perfectly fine. You visited your Infectious Disease doctor 4 times in seven months and had to undergo exactly 209 days of an anti-viral medication called Valganciclovir. Two doses per day, for exactly 209 days.

And I was scared. Everyday. Still not knowing what your future would be. You were doing so well, but I was constantly reminded that no one could predict what other long-term effects this virus had done. It was a waiting game, something that almost did me in.

 

Your first of 2 sedated Auditory Brain Response Tests.

You were also sedated for an MRI and CT (twice).

 

In the meantime, however, I was slowly noticing things… Things that I had been told might NEVER happen… were. You were smiling (at everyone) and making eye contact. You were able to hold your head up. You were playing with toys while lying on your back. You began eating solid foods, like a regular ol’ kiddo. You were sitting up – it was difficult, but you were doing it. You were reaching for toys and playing. You laughed and mimicked your brother. Again, all of these things we were told you may never be able to do because of an extreme cognitive delay. You were defying the odds. Could it be possible? I still wasn’t sure. I still wasn’t convinced because it seemed like everything I read about babies born with CMV was negative. Many babies are very severely disabled…

 

 

 

 

 

At eight months of age, we were introduced to the staff at the Waisman Center – the most amazing place to be if you have a child with a disability. Not at all where I wanted to be, but where YOU needed to be. We were hooked up with a fabulous speech pathologist who believes in you and all of us really. She loves you and is so proud of you. We were referred to a Physical Therapist who also adores you and wants you to succeed. We discussed your inevitable Cerebral Palsy diagnosis and Botox treatments to help with the spacticity in your legs and insurance issues and social security denial letters and why you didn’t qualify for government assistance under the Katie Beckett program, but most of all they hooked us up with a plan. This was something I needed. Everyone got together and said, “What do we need to do to make sure Jayce gets EVERYTHING he needs?”

The PLAN was put in place.

You visited your speech therapist every other week. At first, you worked on recognizing sounds with the help of your hearing aids (and I mean sounds, like a flipping drum). She helped you prepare for your greatest gift ~ your cochlear implant.

 

You visited your physical therapist just as much. When you started working with Jim, you were almost 9 months old. You could barely sit up and you could only roll over from belly to back. You were stagnant. I guess you weren’t incredibly delayed, but I saw your friends begin to pass you up. But, by the first of the year, only 10 weeks after you started PT, you were crawling and pulling to stand! By your first birthday, you took your first steps behind a push toy. Something we never thought you’d do. It was also around that time that we received some great news ~ you will walk. There really was no doubt in anyone’s mind anymore. Now, I knew this was big, because in my experience, NO ONE will tell you something this significant unless they’re really, really sure.

 

 

After all of this news. All of this progress. All of the “he may nevers…” and the “we just don’t knows”… and the “only time will tell...” You were doing it. You were making it. You had your struggles, but my biggest fears were not coming true.

And then…

The dark cloud started to dissipate. I started to live… it took one entire year, but I started to let go (not completely... I'm working on it:). Instead of just going through the motions of having a disabled child and every obsession that comes with it, I got to know you. I watched you struggle and yet work so hard with more determination than anyone I’d ever seen. I watched you capture an audience of nurses with one sweet smile. You babbled and hollered and shrieked with glee about everything from spotting your brother to watching a dog walk across the street. You were happy. You were alive and doing so well.

 

And with that came hope… And a little more faith… And I started to believe that you were going to make it. That I was going to make it.

 

And you just keep proving it to me over and over again. Your Cochlear Implant was turned on April 27, 2013. In late May, Anne, your speech pathologist conducted a variety of Speech and Language tests to assess your overall expressive and receptive language skills. You scored with an age equivalent of 2-4 months, which made sense because you had only been hearing for about 5 weeks (even though you were 15 months old at the time). In other words, you were over a year behind your peers when it came to listening, understanding and communicating.

It’s probably hard for people to understand, but just because you have a cochlear implant does not mean you were instantly able to immerse yourself into our daily lives. You were literally working on training a computer that is implanted in your skull to work as your ear and then send messages to your brain via 22 electrodes woven through your cochlea. Pretty high tech stuff!! It’s taken time for you to understand basic, everyday things like “more?”, “no! no!”, and “come here”. Even getting you to engage in our daily activities like singing, or playing hide & seek, or playing trucks and even getting ready to walk out the door was work because you’d never heard the language associated with those sorts of activities. Lucky for you (and us) your nonverbal skills are outta this world, which helped you pick up on those things that most people communicate through spoken language.

 So, long story short, you’ve had A LOT of work to do! But, I wasn’t worried. I knew you had it in you even when they told me that statistically, kids born with CMV have a harder time adjusting to their Cochlear Implant, and we couldn’t forget that CP diagnosis, which could reveal some oral motor issues as time went on that could hinder your ability to communicate verbally as well.

 

As I suspected, you proved everyone wrong. Just yesterday, you were given those same tests again and you “closed the gap”. You freaking “CLOSED THE GAP” between yourself and your peers. Your scores placed you in the 19-21 month range for overall communication. You’ve caught up! Since May, after only 5 ½ months of intensive auditory rehab therapy, you have caught up to your average, HEARING peers and went from listening, understanding and communicating like an infant to that of a 20 month old toddler. Amazing. Simply amazing.

As of today, you have 19 words (about 10 of those you say consistently all the time) and you’re understanding most of what is being said to you. Things that are really normal for hearing children are HUGE for you. The fact that I can say, “give Mama kisses” or “shoes on” or “where’s your belly?” or “give Mama a bite” and you UNDERSTAND is so, so big. I just cannot express how huge this is and how proud of you I am.

Listening to music in the car. Huge.

Now, your walking skills, Little Mister are an entirely different story. Again, everyone tells me you will walk. Skeletally, muscularly and your overall movement tells us this is true. You can go ANYWHERE as long as you’re holding on to something and you can literally RUN with your walker. You just won’t let go. You simply won’t let go. You’re able to stand independently (for about 3 darn seconds), but you have yet to take a single step unsupported in your entire life. They tell me you will, but I won’t believe it until I see it.

We are learning, or should I say PEOPLE ARE STARTING TO BELIEVE ME WHEN I SAY your overall balance and coordination seems to be what’s holding you back. This is more than likely due to your hearing loss. In addition to CP (which in my opinion has very little to do with the fact that you can’t walk, but what do I know?) you suffer from Vestibular Dysfunction a fancy way of saying that your vestibular system (that helps with balance) is compromised and it’ll take time for that system to correct itself and time for you to trust it, basically.

Until then, you work and you HATE it. You don’t want to go to Physical Therapy (poor Jim). You don’t want to wear your AFO’s because they make you nervous that you’re going to fall. You don’t want to let go of my finger because you’re afraid of falling. You don’t want to practice anything that you are not 100% comfortable doing on your own. So, until you believe in yourself, you won’t walk and I have to come to terms with this. There are days, like after watching you cry for 60 minutes straight at PT, when I scoop you up and say, “Jayce… You don’t ever, ever half to walk. Mama will carry you always and forever. Screw all of them!” Then, there are other days when I literally have to walk away from you because I’m so frustrated with the fact that you just won’t DO IT for crying out loud! Just walk! You can do it! They say you can, so go!!!

 

It’s a process and one that I have no control over. None. All I can do is work with you and believe in you and take time to sulk and feel sorry for “us” and then hit it hard the next day. I’ve learned in the past year and a half to be grateful for what we have and to let go of the things that are beyond our control. It’s hard. I’m still working on it.

 

 

You’ve come so far in your life. You’ve exceeded so many expectations. Yet, that dark morning when they told us you may never walk or talk, see or hear still haunts me. I’m not sure it’ll ever go away, but all I can do is try to focus on the good and continue to be your strongest advocate, your loudest cheerleader, and that CRAZY lady who will never stop pushing you.

Because of you, I’ve been able to get through the absolute hardest moments of my life. Thank you, my sweet fighter.

Until next time…