Updated: Aug 1
My son, Redmond, was born in 2017 with an unexpected diagnosis of Down syndrome.
Complications from Ds included congenital heart defects and pulmonary hypertension, which let to a 34-day NICU stay. He was sent home on a feeding tube and supplemental oxygen. My two older children have suffered from separation anxiety and we’ve struggled to give them our attention while trying to manage Redmond’s health concerns. You can read more about that here.
Eliana started kindergarten today and I’m an honest-to-goodness wreck.
It’s not just that she’s old enough to go to kindergarten, but it’s all the things that I feel like I’ve missed. From the time she was seven months to 15 months old, I was pregnant with Charlie and miserably sick. I remember how sweetly she toddled over and laid her head on top of my head one day when I was too weak to do anything but crawl from the bathroom to the living room and collapse on the floor. Then before she was four, I got pregnant with Redmond. I was also sick for a good part of that pregnancy. Then he was born and “sick and miserable” took on a whole new meaning.
I weep when I think about all the things I wanted to do with her, the kind of mother I wanted to be, and I genuinely could not do it. I couldn’t be that mom. I didn’t have the energy, even when I had the time. I was too emotionally and physically exhausted from tube-feedings and juggling the baby’s nine medical providers and three types of insurance to chase her around the house and yard, to jump on the trampoline, or to teach her how to read. I was too consumed with Redmond’s physical therapy and feeding issues to figure out why her belly hurts sometimes. I haven’t been able to teach her how to swim or even give her serious swimming lessons in the last two years. (We tried last summer, but it didn’t really work.)
And she’s adapted. She doesn’t need me like she did. When I try to cuddle her, to connect with her, she often rolls her eyes and pushes me away. She wants my cuddles and connection during times when I can’t give it. She often wants to go to her grandma’s house and play there rather than hang out with me. And why wouldn’t she? Grandma stops everything when she comes over, plays endlessly with her, and makes homemade cookies. Grandma has earned every bit of her heart.
She will surely adapt to school, to the hour-long bus ride each way. (Dear Jesus, please let her nap on the bus on the way home…) She will adapt by making friends on the bus and falling in love with her teacher. I don’t want to rob her of those things, but I ache for what I haven’t been able to have with her. My precious treasure, the one I longed for, begged God for, and thought might never be mine… I had her and then I couldn’t even enjoy her like I had so dreamed of doing.
I’m learning some valuable lessons through this journey. One of them is to seize the moment when you have it! I got in the lake with them on vacation this year for a little while, but when I really wanted to do it and made the time, it was raining. I should’ve played in the sand when I could. I should’ve gotten over the “ew-factor” at the algae bloom and sand everywhere. How many times has life taught me this lesson over the last few years? Do the fun things now, get dirty, and then wash up. Rest when it rains. Sit around and watch Netflix when everyone is sick. But today – go to the pool, jump off the diving board, jump in puddles, race to the trampoline, and push them on the swings. Stop being a priss and get your hair wet!
She treasures her little brothers and I don’t think she’d give them back, even if it meant she had my undivided attention every day for the rest of her life. She might, in fact, resent that. She already wishes for a baby sister, which would further divide my time.
Yesterday she looked me in the eye and asked very pointedly, “Mommy, are you really not going to have any more babies?”
I answered clearly and directly, “No, I’m not going to have any more babies.”
She dropped her little head in disappointment, and then a moment later looked back up and said cheerfully, “At least we have Redmond!”
“Yes, Eliana,” I replied. “We are so blessed to have Redmond.”
I know she’s thankful for the sacrifices I’ve made to give her the joy of siblings. I know that loving Redmond will make her into a kinder, gentler, more compassionate person. He will continue to capture her heart and bring her joy.
I’m happy that I’ll have more time to do the things I want to do when they’re all in school. They have to go – to learn and develop. I could teach them at home, but we all know that I don’t have the patience for that. I’m a pretty good mom when I have a lot of support from Daddy, Grandma, Kristina, and all the other wonderful caregivers who have helped us along the way. If I really needed to, I could be her teacher too. Extenuating circumstances aside, I’m thankful that small town living provides some great advantages, like really good schools. I can just be her mom, teaching her things naturally as we go through life. Let someone else get out the measuring stick and keep up with quizzes and tests and number lines. I mean, seriously… Number lines? New math? I had a hard enough time with old math.
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Instead, I will send her to school. And I will cry for as long as I need to cry. My new goal is to be prepared for her when she gets home and to spend time focused on her in those first moments. I’ll adjust our schedule so I’m not trying to feed Redmond or do anything else when she walks in the door. I want to let her know every day how much I’ve missed her and how interested I am in how her day went. My prayer is a desperate plea for God to help me have the energy to do that and not to fail again. I love her so much. She doesn’t deserve to only get my leftovers.
For your daily dose of happiness from Redmond, you can follow “him” @redmondthewise