“It has been said, ‘time heals all wounds.’ I do not agree. The wounds remain. In time, the mind, protecting its sanity, covers them with scar tissue and the pain lessens. But it is never gone.”
― Rose Kennedy
After Lydia died, I wrote a brief eulogy of sorts that I knew I could never give. What was intended to be a few highlights soon became a short story yet still not enough to fully capture the light of our little warrior princess.
When I first became pregnant after a difficult road of getting there I knew this was the time that the embryos would take and I would get the twins I already dreamed of. There was even a rainbow at 6:30 AM as we were heading to Overland Park Regional for our not so romantic version of baby making. I thought at the time, perhaps it was a promise that this time would work out. Clay said my uterus was a thunderdome and even though 2 went in, only the strongest would come out. He wasn’t well informed of my life long plan to have multiples. At our first sonogram, the doctor paused with a grin in his voice and said, here’s something you don’t see everyday, in this sack is one baby and in this sack are monozygotic twins. You have triplets. We were in a complete state of shock as this was not in my planned version of motherhood. He gave us a warning that one might not make it and to be cautious. As my little beating jelly beans grew into little people with arms and legs that liked to kick each other, we held our breath at each and every sonogram to make sure they were all growing and doing well. We were delighted to learn I got the variety pack I’d ordered and Clay would have his boy and me with my girls. I always wanted twin girls and a boy, never thought it would be all at once, but here they were. At 6 months into our pregnancy we were devastated at the news that our Lydia had a heart defect. It was at that moment when the sonographer’s wand kept pausing over her beating heart, I knew it didn’t look like the others. I also knew at that moment when we realized our baby only had half a heart, this little baby would be on loan to us and we would not have her forever in our lives.
When she was born 2 months early, she didn’t make a sound but I saw her tiny little legs kicking high as they whisked her away to give her the best chance at life. We soon learned her heart wasn’t her only problem as her esophagus wasn’t connected to her stomach and formed an abnormal connection to her lungs . She survived her first life saving operation at 1 day old and proved what a tough little cookie she was. We naively kept thinking the esophagus could be just one more surgery and then she’d be able to come home. We came to love our NICU nurses as they provided the tender and loving care to help her overcome more surgeries, illnesses and complications. They knew how to make the most perfect and snug little bed and what positions would keep her most comfortable.
One of her primary nurses, Noel soon became Lydia’s surrogate mother. Every time we would go to see Lydia, she would be snuggled up in just the perfect tiny little bundle with all her necessary accessories accompanying her as neatly as possible. And then there was this silly little stuffed chicken in her bed. I always tossed it out wondering who put it in there and where did it come from. I finally asked out loud, “why does this ugly chicken keep showing up in her bed?” Noel said she thought it was hers and we wanted it in there since we had a three little birds themed nursery. She never knew why we’d want an ugly chicken either, but kept putting it in her bed thinking we had some special meaning to it.
Lydia earned herself many special pet names. Once she became overly jaundiced with her liver not working well, she earned the nickname of Snooki. Snookums, Snooks, Snookerdoodle all seemed to stick well with her emerging little persona. She was pint size, orange and had an affinity for narcotics. My friend sent me an I ❤ Snooki t-shirt and I wore it to the hospital proudly. Months later as my mother was folding my laundry and watching Entertainment Tonight she gasped, “You don’t call my sweet granddaughter Snooki after THAT character do you? She’s no role model!” I also had to explain the t-shirt to many people who wondered if I was really that big of a Jersey shore fan. Fortunately, her orange glow faded and other pet names came to be.
In April 2010 we made the fateful decision of sending her to Boston for what we thought would be a long summer but offered the hope of a specialized procedure that would allow her to be drinking and eating normally by her first birthday. This was the Mecca of children’s healthcare and the only children’s hospital with a specialized program to treat her esophageal condition as well as being a #1 children’s heart institute. It was a difficult good-bye to the Kansas City NICU who had become a second family, and a much more difficult good bye to Lydia in Boston, but our optimism helped us take the leap. Lydier (as she would soon be dubbed by the born and bread Boston nurses) also worked her sweet charm and quickly became the queen of the NICU. Unfortunately that summer dragged on into the fall with more complications than anticipated by anyone. Throughout it all, she never fussed except when absolutely needed and would emerge from each and every surgery or state of medically induced coma with a smile. We took turns flying back and forth from KC to Boston with grandparents helping with Wyatt and Ava. Clay and I were two ships passing in the night with Skype as our main communication. Wyatt thought if one of us wasn’t home, we must be in the “puter” and would open it to look for us. In January 2011, her heart for the first time decided to take center stage and cause it’s own set of drama. This would be another set back of 4 months as she stabilized out from her first heart surgery. By Easter (Clay’s visit) and Mother’s Day (my visit) she was almost back to her charming smiling self. She loved having a balloon tied to her ankle and the crinkling sound wrapping paper would make and despite tape all over her face big tubes out of her nose would still grin ear to ear. We were once again faced with another difficult hurdle and decision – reverse surgeries she already had to attempt to connect her esophagus or push ahead. One would allow her to come home sooner but it would be years before she would be able to eat and so we made the painful choice of yet again pushing forward. Once again, things just did not go in her favor and the complications became too numerous. Towards the end of her Boston journey she let us know she was tired and wanted to stop. We did what we could to make her comfortable and just get her back to Kansas City. After 15 months we bid farewell to our beloved Boston friends, many who still couldn’t say the letter “R”, put on Lydia’s ruby red slippers given to her by her nurse and came home to Kansas City. I gave up my geography lessons to the Bostonians that KC was also in Missouri and not just Kansas.
For the first time in September 2011, we were all in the same city and there were no visiting restrictions on siblings. We came on the weekends with Wyatt and Ava taking turns holding Lydia and wrangling toddlers. They enjoyed the park at Children’s Mercy, the train in the snack shop and there was usually a cookie or glass of lemonade to keep them sugar hyped and happy in the Ronald McDonald room. They knew they had special toys in “LaLa’s room” and were always up for the adventure.
On November 16, 4 days after her second birthday we finally brought Lydia home for the first time. She was not connected and whole and had far more medical gear than we ever imagined possible, but she was home and we rejoiced. She spend the first night just kicking and smiling in her new bed and room. What a joy to see her face many times during the day by just going downstairs and we could hold her whenever we wanted without planning a trip or worse yet, a flight. She had some sleepy days at home as we had to continue to slowly wean her from very high levels of medications but she was happiest at home in a lap or surrounded by family. She had many challenges but there was something very blissful about having her calm presence in the home and she was the only one who got away with hours upon hours of lap and snuggle time and falling asleep to head massages. We became accustomed to the soothing sound of her ventilator and oxygen machine to help her very sick lungs. While content at home, we still made her work and I think she knew how many challenges she still had yet to face. We can’t know why she decided to leave us at the moment she did but it was the first real spring like day we had. As Ava and I walked outside, Ava said “Mommy, I hear a bird. Cheep. Cheep.” An hour later as Wyatt was outside playing as well he paused lifted his head and said he heard a bird. I hadn’t even realized the birds were back from winter vacation and Wyatt and Ava were the first to notice their sweet song.
These are the last pictures we have from the Sunday before she died. It was warm enough to go outside and get a little fresh air. My scowl is not from the moment but from the sun. We sat in the grass and held rocks before coming in.Wyatt and Ava were at their grandparents. It was a good day.
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