Our sweet boy, Will, was born September 20, 2016, almost a month early. God only knows that his early arrival was probably a bigger mercy on our hearts than it was on Will’s body. He wasn’t expected to survive his birthday party. Not one to conform, Will gave us plenty of reasons to keep that party going for the next 57 days as he overcame the obstacles placed before him.
We knew from the day the “incompatible with life” diagnosis was handed to us, making the most of our moments together was the best goal we could set. We named him immediately, shared him with everyone, and tried our best to ensure that people saw Will the way we did…a beautiful baby who was an absolute gift from God. We wanted everyone to know that, regardless of if we got to meet him in this world or in the next, his life mattered and he was loved beyond measure.
Will has three great big sisters. Given his diagnosis, we were nervous they would be scared when he was born, as he might look “different” than what they were expecting. He was missing part of his palette, had a double cleft lip, and many other anomalies that we were unsure just how they might present themselves. After explaining these “differences,” our oldest daughter frankly replied, “When you love someone, you don’t notice those things.” It reassured us that Will was a lucky guy to be born into a family with three sisters who already understood and loved him.
As the weeks went by, we fell more in love with him. We scheduled a Palliative Care Conference at UIHC to plan (the best we could) to safely welcome him into our arms in mid-October. Will decided those plans were no good, so he made his own. Twenty-four hours after our meeting, just shy of 36 weeks and in breech position, he came butt-first into this world. It was as if he was showing us all how he really felt about us planning his delivery without his consent.
Everyone rushed to meet him, unsure if we had minutes or hours with him. It was hard to share him. All I could do was pray that if he must take his last breath, could it please be in my arms?
We didn’t have any lofty goals of prolonging his life if it meant inflicting pain on him. We spent that night (and each one after that) afraid to sleep, as we didn’t want to miss a second. Since he obviously was a fighter, our new goal became to introduce Will to life outside the hospital. Twenty-four hours later, we fearfully strapped him into his car seat and headed home. We questioned if we should keep our girls home from school as they may only have a few precious days with him. Then, the flood hit Cedar Rapids and school was cancelled for the week. It was like the world stopped for Will and we became the recipients of an amazing gift of time as a family of 6.
As the days passed, Will made his limits known, but pushed hard to allow us to show him what this beautiful world had to offer. Snuggles, books, sunrises…we introduced him to all of our favorites. We fell into a fantastic routine, and had a plan A (and B, C and D) all in place for whatever his needs were until he made it known that he had experienced all he needed to in this world. At noon on November 17, 2016, I had a gut feeling I should call my husband and have him come home from work. As soon as he arrived, Will decided it was time. We both held him in our arms, told him we loved him and thanked him for letting us be his parents.
There is little worse than watching your child take his last breath. Watching our girls’ hearts break at the loss of their brother and my husband act as the sole pall bearer at his only son’s funeral rank, right up there. Our arms ache to hold Will and breathe in his powdery baby scent, but we’re so thankful we got the chance to do so.
We take comfort in knowing that for his entire life, he knew nothing but pure love.
*A Special thank you to our guest blogger, Jaclyn Richmond. Her story first appeared in connection with No Foot Too Small. NFTS is a local non-profit whose mission is to CELEBRATE the babies we fought for and lost…COMMUNICATE the reality and heartbreak of infant mortality…And fund critical initiatives to support families experiencing loss while working to CURE the abnormalities that threaten healthy pregnancies every single day. Like them on facebook for details on events including their annual gala.
Jaclyn is an Iowa native with roots in the Midwest, but a heart full of wanderlust. She loves to run, read and travel. She and her husband, Mark, and have 3 daughters (11, 9, and 6) and an incredible baby boy in Heaven. She spend her days split quite evenly between teaching Spanish at Xavier High School and taxiing her girls around CR as they try to find their passions. She’s a firm believer that it’s not joy that makes us grateful, but rather gratitude that makes us joyful.
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Thank you for your beautiful words and for giving your son the most wonderful gift of love in this world. Our daughter Lena was born on January of 2016 and also “incompatible with life”. She gave us 33 of the most beautiful days that I’ve ever had and taught me so much about life and love in her short time here. We miss her so much but take comfort in knowing she felt only love here on earth and I look forward to the day I can hold her again when I meet our Savior. God bless you and your family.
It’s amazing how relative time can be. We often lose months where we can’t recall any significant events that have happened, but then can recall nearly every moment of (I can only imagine) the shortest 33 days possible. Many blessings for you and your family. Please know that Lena will be a name we’ll speak often. Hugs, mama.