“Welcome to Holland” was a poem that was first introduced to our family by Finns physical therapist when he was 6 months old. At that time we had just set out on this whole new special needs journey. The path our journey would take us down was not yet clear, but something about Emily Kingsley Pearl’s words stuck with me and still resonate with me 7 years later.
Our little Finn is little boy #3 of 4 boys for our family and after what felt like an eternity of being pregnant Finns birth was a welcome sight. He came into this world with beautiful blue eyes and a head full of dark brown hair but after a complicated scary delivery landed in the Special care nursery. As veteran mom being thrown into the world of the NICU felt like scary, uncharted waters. Nothing can prepare you as a parent to see your child in the NICU, it’s an overwhelming feeling of helplessness and weakness. I didn’t know if I had the strength to be mother that he deserved. But all those feelings completely subsided when I got to hold him for the first time, holding him, taking him in. He was the most precious beautiful thing, and I realized that despite all he had been through in his short 24hrs of life that he was a fighter and because he was a fighter he deserved to have a mother who would fight for him at all cost. In that moment while being in complete awe of the strength of my tiny newborn, it gave me the strength and gave the comfort knowing that if he could do it, then I too, could do it. That one moment set the tone not just for the way I would parent him but also for the way I would love him.
Life after NICU is a reality for any parent of a child who spent anytime within its walls. When Finn finally came home I had romanticize in my mind that life would just go “back to normal” that somehow the fact that he was in the NICU wouldn’t matter anymore, that he would be just be “normal” like any of his other brothers had been. I wasn’t prepared for the heartaches, and for the struggle we would have to overcome during his first year of life. Soon after Finn came home it became more and more clear that something wasn’t right, he was struggling in many areas of his development, not gaining weight, not eating, not meeting milestones. It felt like we lived in doctors office, appointment after appointment, medicine after medicine they still couldn’t give me a reason why any of it was happening. All those feelings I felt when he was first born came flooding back, being scared, being uncertain and feeling a sense of guilt that somehow I caused this. On Finns first therapy visit he was so behind, 6 months old and not rolling over, could barely even hold his head up. I was so focused on what he couldn’t do and so ashamed and embarrassed That I, as his mother, somehow had not done my job because he couldn’t do these things, that I was unworthy of him. I was beating myself up and it was wearing me down emotionally. But watching him smile and laugh and play, not having any care in this world, being so unphased by all the hardships surrounding him put life into perspective for me. That sometimes life throws you curves balls and it isn’t what you expected because it’s outside of what you know, outside of what is “normal” and shakes you on every level, you lose sight of what is important. Being “normal” isn’t what’s important, being “different” isn’t what’s important, but being YOU is what’s important!!! Seeing Finn despite all the factors surrounding him that made him “different” and “not normal” seeing him in that moment starting to develop into the happy, smiley, sweet little boy, being authenticity himself made all those small things that I was so focused on did not matter anymore.
Here are now, 7 years after those long NICU nights and emotional first year. Sometimes realizing that we have made it this far seems like miracle considering where we started. Outside of that first year I never gave up on fighting for Finn, for fighting for answers. It’s been a long road of tests, of doctors appointments, of medications, of therapies, of IEP meetings to finally get a diagnoses. In July an MRI reveled that Finn has Hypoplasia of the Corpus Callosum. Hypoplasia of the Corpus Callosum is a rare brain condition where the Corpus Callosum, a structure in the center of your brain that houses nerve fibers that connect the left and right hemisphere is damaged or missing. Finns Corpus Callosum is fully present but is abnormally thin where a typical Corpus Callosum would be thick. Disorders of the Corpus Callosum affect everyone differently, some not at all, some moderately, and some severely. It can cause developmental issues and delays especially in the areas of behavior and speech development, which are Finns most affected areas. Corpus Callousm disorders also cause issue in areas falling in the midline of your body, for Finn that means his heart was affected. Finding out Finns diagnoses was both shocking and eye opening, for years what I thought was “wrong” wasn’t wrong at all, but having an official diagnoses was a relief. To able to finally put a name to all the symptoms I had been seeing for years was a huge deal. For a lot of years with so many unanswered questions I sometimes questioned myself that maybe it was nothing, maybe I needed to stop fighting, that I needed to move on. All that anxiety just melted away hearing a diagnoses, I knew I had made all the right decisions and all the struggle was worth it. Equipped with a diagnoses we were ready to open a new chapter in Finns story.
Finn is one of the kindest, sweetest, tender hearted and loving little boys I’ve ever known. He is a friend to everyone and anyone. We call him our “little mister popular” because no matter where he goes, doctors offices, therapy visits, soccer practice someone knows him and is greeting him with a “Hi Finn!” He is eager to say it back and sometimes give you one of his hugs! Finn is currently in 1st grade and LOVES school, he is in an inclusion setting where he leaves to get some of his education from a small resource setting. He continues to make positive growth everyday and we couldn’t be more proud of him! He has great manners is always willing to try new things. Outside of school Finn loves to play music and have dance parties, he has a great imagination and he and brother are always playing some game they made up together. He loves to cuddle up with his two cats Lilo and Stitch. Finn is all boy and we love him with all our hearts!! He continues to grow and surprises us with the things he can do!!
I think it’s natural response when we as parents see our kids going through something that is life altering and that we cannot change, we feel guilt, we wish we could change the outcome, that we could somehow switch places with our child, it’s normal to feel those things. I learned in Finns journey that grief, guilt, heartbreak,mourning are normal, they are all emotions that will hit you on this special needs journey, sometimes when you least expect it. When these strong feelings hit you, you will want to be strong, you will want to seem like you are super parent who is holding it all together, you will put up all your defenses so none of those feelings can get in because for if you break down you think you will seem “weak” or “messy” so you hold them in, you don’t acknowledge them. Don’t do that!!! Be gentle with yourself!! You owe it to yourself to allow yourself to feel your feelings!! You are NEVER less for crying, you will NEVER be less for feeling!!! We as parents get so caught up in trying to be everything for everyone ALL the time that we forget THAT WE ARE HUMAN!!! Holding onto all those negative emotions is so toxic!! It’s toxic to us, to our children, to our families, to any relationship we have, it causes us to feel unnecessary stress and anxiety. So LET THEM OUT!!! Cry your tears, write your feelings out, take a bath, play some music, dance it out, do whatever you NEED TO DO to get those feelings out in the open!!! Let them out, but don’t unpack and allow yourself to live there!! Holland is a beautiful place but you will never enjoy Holland if you keep mourning the fact you didn’t end up in Italy!!