In your lifetime you will meet people along the way in every phase. In childhood, in your teen years, through high school, in college, and into adulthood. When Matt and I planned our family we were excited to make memories together. We saw ourselves raising a child amongst our friends who were in our same phase of life. We saw our children growing up together and playing sports together, attending daycare and preschool and having playdates together. Our worlds were rocked when our son came into our lives. Dreams crushed and our idea of our family of two or three beautiful children to never be met. We now had one very beautiful but broken child. Instead of bringing him home from the hospital to start our new life we were stuck in the NICU learning the extent of his brain damage. Instead of showing him off to our friends and family we were keeping him sheltered inside watching him seize and cry. Instead of going back to work and being scared to leave him in daycare I was home trying to get him to drink seizure medications and pumped breastmilk, taking phone call after phone call from specialists and doctors. I had cramped hands from signing early intervention paperwork, tired eyes from watching him suffer from seizures, and pained ears from listening to his colicky neuro cry. The shift work between Matt and I began, trying to give each other relief from this new and scary life. Taking turns to rest from the trying days, to think to much about our future and cry and ask why us? This new phase of life was absolutely horrible, terrible, heartbreaking and tiring. But in this new phase of life we learned to get back up on our feet and live. We learned to walk in different shoes, shoes that were not comfortable and weighed us down at times. We were on a journey that we never thought we’d walk. And we were about to meet new people along the way that we would have never connected with had it not been for our new precious son being brought into our lives the way he had. Like every phase in life there will be trials, and triumphs. When our son was around six months old our worlds were rocked again. Instead of meeting milestones like learning to sit up and grabbing at toys, he was still struggling to hold his head up and loosing the skill to suck and swallow. We were yet again met with unknowns and unfamiliarity. We were undergoing surgery to have a feeding tube placed and welcoming nurses into our home to help us care for our son. We slowly found resources and guidance from others who were walking a similar path. We found families along the way whose “normal” was our “normal.” I looked up to those who were further along in their journeys and confided in them for advice and an ear to listen. It’s those Mom’s I met who would become some of my best friends and who would be like family to us. Our lingo was different from most Mom’s who had children the same age as ours. In playgroups we stuck out like a sore thumb, we tried to fit in but the differences between our children were too different. While their children were meeting milestones, learning new skills, taking their first steps, our children were undergoing procedures, meeting new specialists, and getting new diagnoses. We slowly faded away from gatherings with typical children and clung to families who walked in our same shoes. It was just easier this way. And it was comforting. It felt familiar and we didn’t have to explain things like why we had to bail out last minute for get togethers or why we were crying or frustrated or tired from appointments and therapies. We grew so close to these families. We trusted each other with our children and felt safe. I know that this same connection is found between other adults in our phase of life. Adults with healthy children of similar ages, attending school together, on the same sports teams, having playdates and sleepovers and out in the community together. But a big difference between our families and theirs is that their families will probably not experience the losses of so many of their childrens friends at such young ages. In Silas’ short life he has already lost two of his very close friends and we are now experiencing the heartache of one of his friends that has unknown time left with his family. It’s eye opening, and its scary. It’s unfair. But it has taught us to really embrace every single day we have with our son. When I get angry or sad about the hand we have been dealt, I turn to writing, because it is the only way to really express my thoughts and feelings. Today I am writing to acknowledge these thoughts, in the jumbled mess that they are. This phase of our life is not what I had hoped for our family, it’s tiring, and frustrating and unfair. There are countless positive things I could write about this life, and I try to embrace the triumphs and focus in on our happiest moments together. But there is also the need to express the feelings that aren’t always positive. It’s important to recognize that this life is hard. And unfair at times. Reality is, our time with Silas is also unknown. And being close to these families has shown us this. We walk similar paths as them. And we could easily end up in their shoes. It’s scary, and the more loved ones we lose the harder it hits. I am thankful that we’ve found these families and our children have grown up together and crossed paths. But tonight my heart hurts extra for those we have lost, for those we will lose, and for our own son who has a harder path to walk then a kid his age should. Tonight as I reflect on this phase of our life we are in I am trying to remember to never give up, to hold onto hope and embrace every moment we have with him.
Prayers, light and love to those who need extra tonight.