a big thank you
I always envisioned Lydia would pick a career where she gave back to medical world and children. I was thinking a child life or music therapist working at a children’s hospital or perhaps she’d have the patience to be a social worker or maybe even like the medical gear enough to be a nurse, probably in the NICU where she would care for the smallest and most fragile of patients. As it turns out, she has made one heck of a fund raiser for non for profit organizations. She made generous donations to Angel Flight and the March of Dimes. However, my happiest of her accomplishments is her room full of loveys that are waiting to be tagged and shipped to the NICU babies at CHB. As St. Lukes downtown played such a vital role in keeping them all here until they were big enough to see the world and helped Wyatt and Ava survive for 6 and 7 weeks before coming home, we are taking a large donation of the soft blankets donated to her memorial to their NICU. I remember some of Ava’s bedding you couldn’t tell where the knitting stopped and the baby started as she was crotched and knitted into her tiny little bundle of chartreuse or another fancy color scheme and they could use some blanket upgrades.
Lydia’s loveys.com is under construction and our summer project is to get it up and going. We hope to keep the babies in the NICU with a soft lovey but also assist with other needs of NICU families and research for better surgical management of these complicated babies.
We are bringing the first shipment tomorrow as we are making a final trip to Boston for delivery and for an annual memorial service CHB does every year for children who have passed away. I never thought I’d go back to this city of heart break and crushed dreams, but it will be nice to have some final closure. We got so many touching cards from many of her Boston nurses, social workers and cardiologist that have really meant a lot to us. As we look back on the journey with sadness and regret, they thanked us for sharing our daughter with them and how much she meant to all of them. Many people say how much they loved Lydia and I really do believe they did. One nurse said Lydia was the first to find out when she was pregnant with her first baby! I wasn’t raised catholic, but I would pray to Mary that she would provide a mother’s loving touch to Lydia when I couldn’t be there. Maybe Mary didn’t actually come, but I do believe Lydia was always placed in the hands of loving nurses who kept her comfortable and made her feel special and loved when we couldn’t be there. One of her favorite nurses Sue told us how Lydia would just start to fuss a little when she walked out of the room only to flash her a giant grin when she walked back in the check on her. Had we not tried so hard to get Lydia back to KC, there may have been some Bostonians fighting to keep her there.
We (as in the grandmothers) tried to send out personal thank yous to everyone. I’m sure we missed many of you who made donations, provided a lovey or more, sent flowers, delicious meals, offered baby sitting and just provided the words of encouragement and support that have kept Clay and I upright and semi functioning in the past few weeks. I also have appreciated the many games of scramble with friends and drawsome that have kept my insomnia moments filled with something to distract my mind more than then sadness that comes with night. Hopefully you’ve also helped prevent Alzheimer’s by keeping my brain thinking more than it does during a typical day filled with PBS kids, bubbles and play dough. We all so greatly appreciate everything and we couldn’t have done it without Lydia’s tremendous fan club.
Also very special thank you to Lindsay for my new bracelet that says “take these broken wings and learn to fly” with their names unscripted on the inside and beautiful birds nest necklace with 3 little egss. Even though I was first singing the Mister Mister version, the song “Black Bird” was the first song I Leared on the guitar and I was singing it to Wyatt and Ava and reflecting on that exact lyric before this arrived in the mail. Clay loves his guitar pic, daddy jewelry and has already worn it more than the DILF shirt I got him for his first fathers day. We also love the care package and Chicago area loveys you collected and sent.
To Bethany, a college friend we happened to reconnect with that also gave me a beautiful mother bird with her nest of 2 pink eggs and 1 blue egg. Lydia has given the me the gift of reconnecting with lost friends and I appreciate that.
To Margie and Mandy for some delicious dinners, hearding Wyatt and Ava into coordinating sailor outfits to match their sister for a final time and bringing them to the funeral. Also for the book that has helped with healing and the gold bird with her little wooden egg (a nice change when in browns and earthy wear and out of my mainstream black)
To Kelly for my second mommy jewelry with their names and the words three little birds that I have already worn the silver down to need some retarnishing.
And Clay for my first piece of mommy jewelry with the Mother and Child. I will always see it and think of the moments I too held the most beautiful baby in the world in my arms for a brief period of time and had to see her leave me before I was ready.
I’m not much a jewelry collector, but I treasure these pieces more that the finest diamonds or jewels and if I don’t have one on, Wyatt and Ava will search under my shirt and ask “where Mommy neck-ace go?” as I hold them close and they search my face, they point to mommy’s feckle (my disdained cheek “beauty mark” mole) and neck-ace and before then maybe pointing out I’m not in glasses or have an “owie” somewhere on my face that has just been squeezed and not yet covered in concealor.
Another huge thank you to Allisha, Jenny, Christie, Heather, Becky and Jayla for the beautiful bird bath with 3 little birds (one is even purple) that now site in my shade garden at the back of the house. With 2 cats, it may be advised the birdies keep their baths limited to quicken freshen ups rather than full spa days. I hope to have a butterfly memorial garden for her someday but that may be a future project for the next Johnston Casa as landscaping in the rocks and clay around our house has been a bit tough.
I’m forgetting many, many more of you and I do apologize. It really hasn’t been an act of pure laziness that has prevented from handwriting note cards. It has just seemed such a daunting task and also a final reminder that there won’t be any notes written for birthdays, holidays and graduations either by me with her name or in her emerging and shaky script preschooler script. I don’t know how to sign cards as the J5 or JPack doesn’t seem enough and it’s hard to sign Wyatt and Ava without their sisters name hard to write her name out at all.
Thanks McKenna and Jayla for some last minute Lovey tagging and packing! Grand total going to Boston tomorrow: 183
Thank you to InVision Church for the huge donation of Loveys giving us even more to be sent at a later date.
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