Let's be honest. I never expected to have a "complex child". Not for one minute while pregnant, did I consider that I may sit in an OR waiting room 14 times in two years praying for my son. You want to know the truth? Right before I went into labour, my worries were that I needed to apply waterproof mascara so that I would look beautiful holding my baby in our first photo and I was upset because I had yet to buy a crib skirt. I only held my Maksim a moment before he was whisked away without explanation - my mascara, although long-lasting slid down my cheeks and the crib skirt didn't matter anymore because it was almost three months before he came home.
Four hours after his birth I did not know my son's weight or length; instead I was told things like he may not survive, that they think he has a rare syndrome, that they have already had to save his life repeatedly and that he is being transferred to McMaster Children's hospital.
Maksim was tested and labeled with Pfeiffer's syndrome. It was a sporadic gene mutation of his FGFR2 growth receptor. Pfeiffer's affects the way the bones in the skull, hands and feet form which can lead to many complications. It is rare and it is frustrating because there are a lot of unknowns. Treatment in Maksim's case (and in most) is almost always surgical. As Maksim continues to grow additional surgeries will be required.
Nothing is what I expected it to be like. The bad parts are bad, I will admit that. I don't want Maksim's suffering to be in vain but you know what... the good parts are truly amazing! All three of us smile through the tears and keep trucking along. We deal with things as they arise and do our best to support each other and give our son the best and happiest life possible.
I am pretty sure I am not a good blogger. This entry is definitely full of missed opportunities to share because I am new at this idea of being open! A main goal of this website is to spread awareness so I guess if I am going to ask others to share, I have to as well. I think the reason I have been so guarded was because so much was happening so quickly and unexpectedly when Maksim was first born. Right or wrong, we felt it was our job to be strong for each other, our family, friends and most of all for our baby. At the time, sharing a lot of information we thought, would have solicited more panic, negativity and "poor Melissa, poor Daniel" The love and support we received is worthy of its own blog entry but unless one was there day in and day out, I think it would have been hard for one to understand the beauty that was also happening within those hospital walls. Despite all the crowds of doctors, wires, tests and surgeries, it was still our family. Daniel and I were new parents, bathing Maks, feeling his soft skin, holding him, adoring him and appreciating his life in ways that perhaps only parents that have experienced fear of loss could relate to. I still can't explain how the hardest, most stressful, painful time of my life, could be so beautiful.
Once finally home and trying to adjust to our new normal, it was and is challenging to go back into that hospital life for appointments and surgeries. We start to believe that it is behind us and that we can focus on regular day to day things and then BAM, another hospital stay. What gets us through? Where and how do we have the strength? Our Faith, our son, each other and everyone that loves Maksim. My son wakes up smiling and it is highly contagious. If you have met him he has probably stolen your heart therefore he and we have a tremendous support group of family, friends and medical staff constantly sending their encouraging words, prayers and love.
Don't get me wrong, I wish with all my heart that my son didn't know this suffering but I do believe that my husband and I have been given a gift. We are able to appreciate and cherish each moment and ability Maksim has; nothing is taken for granted. I am much more open with regards to my son now since I can see clearly that his story is one of resilience not sadness. The happiness and love just radiates off Maksim and it inspires and brings joy to all around him. For one moment, when he was first born, I will admit I thought, "Why me?" Now "Why me" is in the context of "What did I do to deserve the honour of being Maksim's Mama?" I am so proud of my son and I am ready to tell anyone that wants to listen.
Thank you for taking your time to read this.