* The formatting is being stupid, so the bullet list is the only way to make it stay together -.-
- “Once upon a time
- I stood where you stand,
- staring up at the same stars
- as they sparked against the night,
- and I believed
- for a moment
- that I could live forever.
- Nobody does.
- But I was and you are
- because love put us here,
- because hope made us fight,
- because being in the world is worth
- the deep ache of the too few hours we are granted.
- laughter, singing,
- trees whisper in a breeze
- that sighs down from tumbled clouds a whole sky high.
- There are books and birds and infinite particles of sand,
- hands to hold and warmth to share,
- hearts full,
- salt sea air and grass just cut,
- and shifting shades of light
- at dawn, at dusk,
- and even after the dark falls over us,
- love will burn on
- and on.”
- – Claire Greer
This poem was written for Noah by a dear friend of mine who lives half a world away. When Noah was just a few months old, Caleb’s sister Olivia directed me to a blog about a little girl named Sophie who had HIE just like Noah. Through that blog I met her mother, Claire, and through her I found a wonderful tribe of women who understood exactly the trauma that Caleb and I had experienced over Noah’s first few days. I am endlessly grateful to Claire for all of the support that she has given me over the years and this poem, that she wrote especially for Noah, was so fitting that it deserved the place on the back of his memorial booklet.
Noah’s birth and following days were the most difficult and the most traumatic days of my life. My therapist once said that I was having to grieve the baby that I thought I would have while also adjusting to the new one that I brought home. I found this to be especially true as the years went on, and Noah got further behind his peers developmentally.
Caleb said to me the other day that we’ve basically been grieving for the past five years. As sad as this all is, Noah’s passing also provides us with a bit of closure and relief. We’ll never have to worry about him being bullied or ostracized at school; his classmates loved him and read to him and missed him when he was gone. We’ll never have to worry about who will take care of him when we’re gone, because we know that he had the absolute best care in the world. We’ll never have to worry about his body getting too big for us to carry… he may have been half of the length of my body but he was still a tiny thing.
In a way, that’s sad in and of itself. I have always said that I wished that I had a crystal ball to see what Noah’s future would be like. Caleb was always so much better than me at living in the present, while I was always thinking ahead about things like harness systems and lift vans, thinking about how difficult it would be to take care of Noah as a teenager or an adult. That’s the thing, though. In life, there are no crystal balls. If we would have known ahead of time when Noah’s last day on earth would be, we wouldn’t have been able to enjoy the time we had with him, it would have always felt like a ticking clock above our heads. Life is so fragile and fleeting, and I think that we forget that so easily.
When I was pregnant with him, Noah gave me a reason to live. When I was deep in depression and actively planning my suicide when he was almost two years old, thinking of leaving Noah motherless or leaving Caleb to raise Noah alone, led me to getting the help that I direly needed. When I was ruining myself and my body, Noah gave me the strength to strive for and accomplish many of my personal goals. He has saved my life in so many different ways over these five short years he granted to spend with us, and I will continue to grow and learn in memory of him and all of the strength he had in his short life.
Noah may not have had the life that Caleb and I dreamed and wished for him, but he loved the life that he did have. He did not speak words, but his smile spoke volumes. He had a gentle soul and a quiet strength that inspired me every day. He was always the happiest boy, and animals loved him for his soft and gentle nature. He loved going to school, and swimming, especially in the hot tub. Whenever I took him to the pool he would always smile so big when I put him on his back and guided him through the jets in the hot tub. He loved to be read to, and his favorite foods were chocolate cupcakes and yogurt.
Noah was the shining light in his daddy’s life, and vice versa. I used to always say that Noah only needed me to keep him fed and warm and his Video on Trial on loop, a placeholder until his daddy came home from work every day. The love between them inspired me to be a better mother, even though I felt like I could never measure up. I am beyond grateful to have shared this parenting journey with the wonderful person that Caleb is. Noah was his carbon copy, and he will always be his special little boy.
Noah has taught me so much about love and compassion, and through him I have met so many children with many different conditions and issues that the typical child doesn’t have to deal with.
He turned me into an advocate, and someone who isn’t afraid to speak her mind when something isn’t right. I was 19 years old when I got pregnant, and I thought that I had everything figured out. Noah threw a huge curveball into my life and taught me that babies aren’t like a Huggies commercial, and sometimes things go wrong even when you do everything right. Life is so precious, and yet so unkind at times. He taught me to appreciate what I have; my health, a fully functioning body, and the support system around me.
It’s so strange, now, knowing that he isn’t here. As mothers we throw so much of ourselves aside the minute we see those two pink lines. Every minute of our day, at least subconsciously, is spent wondering if our babies are okay. I never had to actively worry about Noah when he was with Caleb, I was never one of those mothers who couldn’t leave their child with someone else, but I would still think of him during the day or think of what my next responsibility for him was. I’d be at work and thinking about how I had to get up at 6:30 the next morning to go to Caleb’s to get Noah ready and drive him to school. I’d think about how I had to email the teacher about something, or think about planning Noah’s birthday or taking him to a playdate, whatever. This week has felt very surreal even just in that sense. Driving past the school almost every day but not driving in. Not seeing Noah’s carseat or bear hat-topped head in my rearview mirror. Hearing his baby cousin squawk from the other room and thinking for a moment that it was him, and quickly reminding myself that it wasn’t.
The amount of love and support we’ve gotten this week has been overwhelming, but also so beautiful, and an excellent testament to the impact that Noah’s short life has made on the people around us, or even people we’ve never actually met.
We called today a celebration of life, because Noah has brought so much life into our lives, and we will forever be grateful for those lessons that he has taught us. His memory will bring us strength, and the love he brought into our lives will resonate forever. Our little boy is gone, but he will never be forgotten.
- I’ll love you forever,
- I’ll like you for always,
- As long as I’m living,
- My baby you’ll be.