Birth, Cerebral Palsy, Family, Friendship, Love, Our Son, Parenthood, Personal

Grief and Me. And Three.

First Embrace with Mom

Sebastian is going to be three, three weeks from tomorrow. Three. This is the first time I held him, two days after he was born.

Before I even wanted to have kids, I had nephews. And then a niece. I loved spending time with them whenever I came ‘home’ to Michigan for an extended visit. In fact, it was one of the main reasons for my return visits. I wanted to know my nephews and niece as much as I could. Over time, I came to the conclusion that my favorite age in the early years was three. For me this was the age when they started gaining some independence but still had such a huge imagination and optimistic view of the world around them. We had so much fun chasing and running away from imaginary friends, reading books together, doing art projects, and fun little conversations. Of course as they got older, I loved all of those ages too. I even loved the early ages, I just wasn’t around for most of them. I loved them no matter what age they were. I loved them so much that I couldn’t imagine loving another child more. Until my son was born.

When I knew that I was going to become a mother, of course I looked forward to all of the cuddles and bonding through nursing during sleepless nights in the newborn stages. I knew that there was something called the terrible two’s during the toddler stages that would be another adventure. Of course, I was really excited about those pretend play moments and budding independence once my child would turn three. Including the silly things we would discuss. Then Sebastian was born into the world not pink and crying, but bluish-gray and silent. Suddenly I was faced with the loss of the baby I had carried inside me for 41 weeks. Those daydreams of the child I had imagined didn’t matter anymore.

Some of you asked about grieving. Did I grieve when I found out Sebastian would likely have CP? Did I grieve at the loss of all the things I had imagined for my son before he was born? And did I feel guilty for this grief? I remember the tears and shock that came with the initial diagnosis that Sebastian might have CP a week or so after his birth. I recall being ushered into one of the side rooms off the NICU by the doctor. This was a room specifically for parents to talk about serious things. A counselor joined us. The door closed and we sat down next to each other, facing the doctor and counselor. We could no longer hear the beeping of the machines just a room away. There was shock. And then there was fear. There was surely some sort of sadness, a drop in my stomach and flood of emotions all at once. Mostly I remember trying to get my head around what this meant. What was cerebral palsy? All I could see in my mind was a child in a wheelchair. We cried. We held each other in the dark of the room after the doctor and counselor left and we cried. We cried about the unknown. And we cried because we had immediate preconceptions (misconceptions) of what life would be like with a child in a wheelchair. And then we stood up, wiped our noses and went into the hallway to scrub our hands with disinfectant. We went into the NICU baby room and held our perfect son.

One month later we learned we were moving to Egypt at the end of that summer. We decided to take a short trip ‘overseas’ to initiate Sebastian into the world of travel, to prepare for a much longer flight in our near future. The day before we left we had received an official diagnosis of CP, Sebastian was three months old. We flew into Zurich to see some friends of mine from my short stint teaching in Schaffhausen a couple years prior. While leaving the airport we saw a family with two children in wheelchairs. Ali and I looked at each other. We struggled to hold back our tears. We squeezed each others’ hand and walked on. In those moments we wondered if this would be our future. And what that future meant. We spent the weekend celebrating Sebastian’s recent arrival into our world and catching up with old friends. Although we eluded to complications from birth and the unknown repercussions, we did not share he’s very recent diagnosis, as we were still trying to process it ourselves.

Do I feel guilty for having these feelings? Am I not human? I feel guilty not because I had sadness and fear for the future then, but I feel guilty because now I know that having a child with a disability is not the end of the world. It does not mean that there is no happiness. No smiles or laughter. It does not mean that there is no future. It means that life is full of impossible possiblities. It means that my son makes me both laugh and cry at his determination, his happiness and his desire to be around his friends at school. It means that I can watch my son grow up laughing and exploring with my nephews and niece. It means that my son has inherited his father’s laid back attitude on life and now I am balanced by not one amazing man, but also a little amazing boy. In my journey so far I have come to understand that life in a wheelchair is not something to cry over. It is not something to fear or hide. I feel guilt because I underestimated my son. With every family I have met, in person or online, I have been blessed. I have seen the future of my son in so many of these wonderful children (and adults) and I have seen the strength that I find deep within, in their parents. I have grown and I have lost that sadness and that fear. I have lost that grief. Now when I see a child in a wheelchair I want to go up to their parent and ‘talk shop’ while introducing our kiddos to each other. And sometimes I do.

Last week I wasn’t feeling so laid back about life. As I mentioned, my husband and son are the laid back types, I struggle with it sometimes. Last week I was recalling three. Three years old. What I thought it meant then. And what it means for us now. I was feeling sad. I was grieving my son not being the three year old I had imagined in my previous, childless life. For one night I allowed the sadness to overtake me and I cried it all out. And certainly, I felt guilty. Because our son is amazing. Over the weekend I had a good chat with a good friend and she helped me get back to me. Back to the happiness. It’s true that Sebastian is not the size of a three year old. He barely fits into 2T clothing. He does not walk or talk like a three year old. He does not play like a three year old. But he does smile and laugh like a three year old. He has friends like a three year old. He enjoys imaginary play like a three year old, even if I’m initiating it. He loves reading books like a three year old. He explores the world around him with our help, just like a three year old. It was in this place of coming back to my reality that I realized this was a grief (and guilt) that I needed to let go. As I mentioned before, grief comes in waves and you ride them out and soon it is over and behind you. It may knock you down, but you get up again. In that letting go, the guilt goes too. Because carrying additional baggage make swimming more difficult. And what is normal anyway?

I am sure that the wave will come again. And I will swim under it for a moment and then I will come up. I will breathe in the fresh air the sunshine brings. And I will swim on. Happily swim on.

And three. Three will be awesome. Just like one and two were.

Petting GoatEnjoying the mini-petting farm at the Maple Syrup Festival Saturday afternoon.

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12 thoughts on “Grief and Me. And Three.”

  1. Kara, I love you. I know that might seem odd but I feel so incredibly privileged to read about your life on a weekly basis. You help me get the grief that I feel over certain aspects of my life and in my daughters that I cannot control. Today is one of those riding the waves of grief day. I am sitting at my work desk trying hard not to cry and go back to being a professional mom. I read your blog and it lifts me up. You are the most amazing mom and I am so grateful that I get to watch Seb grow up in small ways.

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    1. Thanks so much Gemma, it doesn’t seem odd at all. I know that it’s been years since we’ve seen each other, but no matter, we can connect in little ways online. I’m so glad that I can be a part of your life, whether it’s encouraging or listening or learning about how things are for you too! You work so hard to provide the best life for your daughter and you are doing a fantastic job. She is so lucky to have you as a mom and I know you feel so blessed to have her as your daughter.

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    1. Thanks Shay. I will never forget meeting you in the basement of Gilmore under odd circumstances! But so happy that we did meet because now we get to share stories about our amazing children with each other. Big hugs.

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    1. I know this is late, but thanks so much for your comment and kind words. I love ending my night or starting my day seeing how Oia is doing.

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  2. Kara thankyou for such a beautiful post and sharing your first 3 years with Seb x 3 will be awesome for you all, maybe different than you ever imagined but a wonderful journey all the same. Much love to you all xo

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    1. Thanks so much for sharing our lives with us! Even from afar it’s so great to see how your kiddos are doing, and you! You inspire me so much.

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    1. Thank you! What I said to Bron, goes for you too. It has been so amazing having met your family and sharing this journey with you. You encourage and inspire me and I know three will be awesome because one and two where already. Perspective really is everything.

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