I’ve always considered myself a thankful person. I have notebooks scattered all over our house filled with lists of reasons why I’m thankful. They range from warm caramel lattes and holding Ben’s hand, to watching a student understand a concept or laughing around a dinner table. All very meaningful, all very special. However, let’s just say, I haven’t had a thankfulness notebook in about 16 months (if you need help with the math, that was when E was born).
E didn’t come into the world the way we had planned: I had wanted hymns playing, to squeeze the life out of Ben’s hand as I pushed and hold her on my chest right after she arrived. Instead, she came into a quiet operating room, to two terrified parents and was whisked away after a quick kiss on the cheek from us. One thing I am thankful for from that experience: over and over again the doctors and nurses told us to expect her not to cry. However, soon after she arrived we heard it: as soft as a kitten mew, but it was there. Our girl was here, crying her announcement to the world, when they said that she wouldn’t. She was already defying their expectations. I’ll remember that sound for the rest of my life. But that moment doesn’t fit on a list, you see.
That is the rub: thankfulness isn’t the same for me anymore. It doesn’t come easily, and it doesn’t fit in cute notebooks. I’ve come to see the difference: thankfulness is easy… gratitude is deeper, difficult… delayed.
I am grateful for a diagnosis for E. An actual name to put on her condition. As I meet more parents of children with Phelan-McDermid/Pitt-Hopkins, they recount YEARS, yes, YEARS of misdiagnosis. Years of thinking they had finally found answers, but in actuality it was just dead ends. They had no guide, no way to expect or prepare for the future. I had one year, three months of knowing deep down that something was “wrong” with Ellie. That was honestly one year, three months too long for me. I am grateful we didn’t have to go through the torturous years of not knowing. Having E’s diagnosis this early allows us to be proactive in her therapies in order to set her up for success and we can prepare for the more difficult parts. We can connect with other families and ask for advice. We can raise awareness of her syndromes, which leads to more funding towards specific research for them. Her diagnosis isn’t one that I am thankful for, but I am finding some gratitude towards it.
I am grateful for my husband in a way that I’ve never been before. Yes, I am still thankful for his humor and being able to hold his hand. But this man. Oh, this man. He is a wonder to me most days. When my heart is the darkest, I think his is the lightest. When I moan at her inability to sit up, and he rejoices when she places her hand down briefly to prop sit. I mourn our future days and he revels in the present. He has this amazing gift of allowing the future to stay exactly where it needs to be: in the future. He is teaching me so much about what it means to be fully present, how to work towards goals and celebrate when you reach them… and how to be patient. He knows good will come of this, and I am thankful that he is the one holding me when all feels amiss. It is his steady faith that has brought me through some of my darkest times. This is a gratitude that can’t be listed.
Finding gratitude has been hard for me this Thanksgiving; hence, why this was penned the day after: ever delayed. 🙂 I am learning that because true gratitude has to be intentional… it takes time. If I am honest, I do not feel an abundance of gratitude when I’m pinning E’s arms down during a 50 minute abdominal ultrasound. I am actually quite bitter, grumpy and cynical. However, while Ben and I talked about the process in hindsight we said, “What would we do without crinkle books and peek-a-boo?” and “E, you are amazing. You did such a good job.”… and I realized… I am so grateful, truly grateful for E.
E has endured coming into the world and knowing nothing but strangers, sharp jabs and the walls of a plastic box. She has therapy on a daily basis, her body being moved and positioned and pushed. She has spent countless hours in doctors offices, being assessed, poked and prodded. Her first 16 months on Earth have been anything but typical. She has every right to be the grumpiest baby in the entire world. But she isn’t. She is content. She loves being held and playing peek-a-boo. She is mischievous and FUN. She defies expectations. She is my hero.
Today I pray you find a deeper level of gratitude, friend. That 1 Thessalonians 5:16-18 becomes an attainable reality for you. And if you need some help, come visit us and get some E cuddles. She will remind you of the good in the world and all that there is to be grateful for. And trust me, it won’t fit into a notebook.
Rejoice always, pray without ceasing,
give thanks in all circumstances;
for this is the will of God in Christ Jesus for you.
– 1 Thessalonians 5:16-18