Written by Caitlin Revane
Our daughter has been a fighter since day one and continues to amaze us with her strength and determination. There are days when it just breaks you and you think why her, it’s not fair she should be running around and having the time of her life! And then you have to pull yourself out of those thoughts because kids feed off your energy and attitude…you are their #1 cheerleader!
As your baby grows up I think it’s just a natural and innocent question for people to comment or ask about their development, whether it be family, friends or even strangers. “It must be so nice you can sit her down to play on her own” “is she just pulling everything off the shelves as she crawls around? “did she say mama or dada first?” “oh gosh she must be keeping you busy running around the house!” At first you say “oh not just yet” and try to justify why you aren’t giving them the answer they are expecting but then you eventually just nod and smile or give a laugh as if to say “oh yes it’s crazy at our house”. I know the person is only being genuine but I started to find it easier to not dive into the details selfishly more for my own sake. It took awhile but I finally know that is not fair to anyone: Camilla, family, friends, myself, heck even the stranger.. How will people know what is going on if you don’t open up? How will people know to, maybe phrase their innocent question a little differently to the next parent and child? How will people become even the slightest bit more educated to developmental delays and how different each child’s journey looks? You also start to realize you need to set a good example for your child to not be afraid, ashamed, negative or feel like an outcast and instead to be strong, confident, determined and comfortable in their own skin!
Our daughter had restricted growth while in utero and was born at a small but mighty 5lbs 1oz and by all accounts was healthy when we left the hospital. She was quickly diagnosed with GERD (extreme acid reflux) which caused poor weight gain even though she has the appetite to rival an NFL linebacker. The doctors started to notice some delays in development with her gross and fine motor skills. Initially we thought surely her size is holding her back from meeting milestones, once she gains more weight and muscle she’ll be off like a rocket! This however was not the case and we quickly realized when the weight checks became 2x/week and recommendations to specialists started at 2 months. I think at one point I counted Camilla had 9 medical professionals on her roster who were all trying to solve this multifaceted puzzle. Just before her 1st birthday we were admitted for a hospital stay over a weekend so they could rerun old tests, run new tests, monitor, discuss as teams…pretty much put her under a microscope to find out why she wasn’t catching up in both weight and global development metrics. Think sitting up, crawling, standing, feeding herself, etc. Luckily we were advised to start both physical therapy and occupational therapy at around 4 months but no major leaps were happening yet. She still wasn’t sitting up unassisted, she wasn’t feeding herself, she couldn’t hold her own bottle, she wasn’t bearing weight through her legs and she would only use her left hand to play with her toys.
One exam Camilla had when she was around 4 months was a cranial ultrasound, which is a technique for scanning the brain using high-frequency sound waves to produce images of the brain and cerebrospinal fluid. The Neurologist wanted to take a look at her brain and check things out under the hood. The results came back with some inconclusive results and a full MRI was ordered about a month later to take a deeper look and answer some questions. As you can imagine, having a 5 month old lay still is basically impossible and she was too little to get anesthesia but luckily she slept during the whole thing! After her hospital stay, which was some 7 months later the Neurologist wanted to have another MRI done because the brain had grown so much and results could have changed. This time around she was older and heavier so anesthesia could be given, this would allow for the images to be taken with no movements and Camilla wouldn’t be scared to be in the machine. Waiting for the call from the doctor felt like an eternity and then we finally got the results. The MRI showed that Camilla had suffered a minor brain injury while in utero causing white matter loss on mainly the left side of her brain but a little on her right as well. This injury and white matter loss essentially cause the nerves to fire off at a slower pace…explaining her developmental delays in a wide range of areas and the poor usage of her right side.. The Neurologist informed us this injury couldn’t get any worse and only time will tell how her brain will develop and evolve from this injusty. They told us to maintain her therapies as this was the best thing we could be doing for her and her developmental growth and we would have check ins every three months or so. It was such a shock to the system to finally have an answer but also not have been able to protect your child from this injury happening. Or to not have that silver bullet to fix everything. Or to even know what the future looks like for your child and their day to day on a most basic level.
Camilla has an amazing team of therapists for physical therapy, occupational therapy and speech therapy and she continues to flourish, improve and grow! You really learn to appreciate the little things and celebrate all victories no matter how big or small. But therapy is no joke and you have to be prepared to see your child struggle or cry out because they are so frustrated or in pain! Their mind knows what it wants to do and sees other kids doing what they want to do but they can’t get that message right to their body to walk to the toy chest or say ‘mama’ or ‘dada’ or throw a ball. We know it’s a long road ahead but we see how Camilla has come leaps and bounds and is so smart and determined that it really helps push her overall. Camilla wasn’t sitting unassisted until she was about 16 months, and as of today at just over 2 years old she isn’t walking but with her braces and some help holding her up she can take a few steps from here to there, which is something we weren’t sure we’d ever see! Her vocabulary is expanding but you couldn’t categorize it as speaking, she does understand what you are saying so we rely on visual cues, sign language or even just go off her reaction and mood change. Almost overnight she wanted to become more independent with feeding and now wants to feed herself more and more each day and is making the best mess figuring that skill out. She uses her right hand so much more but still needs a gentle reminder now and then to engage it when she’s doing most anything. The best and biggest growth is Camilla’s spirit! She is a happy, funny and outgoing little babe which really helps lift us up and helps to put things back into perspective during those tough moments.
I’m not going to lie, it’s hard to be positive all the time and you have your days when you just have to go behind a closed door and let out a good cry. You have a million thoughts running through your head…positive, negative and in between and sometimes you need time alone to process it all so you can let go of that negativity, you’re only human! A lesson I quickly learned is all that negative energy and stress is not worth it and just wears you down. One of those thoughts that creeps into my head is that it’s our family against the world. Those thoughts usually don’t last long because I quickly remember the amazing team around not only our child but our family. All the family, friends, doctors and therapists that are cheering her on and in her corner.
I want to continue capturing her journey and experiences in words and pictures as a way to not only show her how far she has come, but also as a fantastic reminder for us at how much she has grown (physically and mentally). I hope that Camilla’s story can show even one parent or child going through something similar that the brain and body are a wild wonder and can surprise you! Children are so resilient and determined and truly have so many things to teach adults. Every child’s path who has a developmental delay is different and there will be peaks and valleys along the way. One of the most important and hardest things to remember is when you are in a valley there will be a peak in the future…and there are people there to help pull you to that peak if you need a little extra boost.