Dreaming big for Eloise

KNOWING VS NOT KNOWING

One Mom of a 17-year-old boy who has the same deletion as Eloise recently said, “Wow, reading your birth announcement made me realize how much more information you have at this point than we did years ago. Back then there was almost no information out there. I’m not sure if I would have preferred knowing what the future held for him or not knowing. Since I didn’t know, though, I was free to get to know him for who he was at that moment, and not grieve for what he would or would not be some day.”

She’s so right.

Selfishly, at the moment I wish I didn’t know what Eloise’s future would likely hold. Then I would be fully present in enjoying her little baby sighs and noises and milestones. (Although I would probably grow increasingly concerned over time as she didn’t hit certain milestones. Like, she barely makes eye contact with us and smiles are… kinda a thing but not so much.)

But, for Eloise’s sake, I’m glad I do know.

And I’m especially glad to have found a community of parents with kids that have her same deletion. I feel like we have so much more of an advantage than many with rare chromosomal issues because I have a general idea of what may come, and what I need to be more concerned about than a normal parent. Meaning, if there is a health issue (because there will be many), it’s much more likely we can catch it far earlier for Eloise and proactively help. And because we know she has a problem, she will be in so many therapies to help her motor skills early on, because things like sitting and crawling and walking are going to be a huge uphill battle for her.

DREAMING BIG FOR ELOISE

A few days back, I don’t remember if it was in the middle of the night or during the day or somewhere in between, I was pausing to pray. (I’m not sure how else to tell the story without bringing in my faith. So if it makes you uncomfortable, try substituting “Jesus” for “the embodiment of love and goodness” or “the universe” or “god” if that helps.)

I closed my eyes, took a deep breath, and imagined Jesus (because, to me, Jesus is easier to picture as a human than God is) next to Eloise and I.

I told him, “I know you are under no obligation to fulfill any of my desires, but, just in case, I’m going to dream big, things that seem like they might be impossible. But I might as well tell you my heart while I’m at it.”

• For her to walk by the age of 2 or 3 (Most, if they do walk, don’t walk unassisted until somewhere around 4-7 years old)
• For her to walk so great that she won’t need a wheelchair outdoors (Many of the kids who do walk still use wheelchairs quite often outside the house)
• For her to walk with a normal gait (I’ve only heard of one kid so far who walks “normally”, and that is most definitely likely to the fact that he has the mosaic version of her deletion, meaning he has one set of chromosomes that are fine, and then the other set has the deletion)
• For her to have some words (Same deal as above, I’ve only heard of one kid so far who has any words at all, and he’s the mosaic one. The rest, as far as I can tell, if they do communicate don’t seem to have any luck with signs or devices. Instead, the most common form is to bring objects to their parents, like “shoe” means they want to go outside or a remote control means cartoons.)
• For her to breastfeed normally without a shield for at least a year (It’s rare for any of the kids to have breastfed at all, although at this point I’ll take breastfeeding with a shield the entire time if that’s what it takes)
• For her to grow out of her food intolerances (So far it looks like it’s not uncommon for kids like her to keep these food allergies their whole life, like that 17-year-old)
• For her to be potty trained by 2 or 3. (I have to ask more, but I have only heard of one of the kids like her who is potty trained and isn’t still in diapers as a young adult)
• For her to be able to eat by mouth all her life. (I don’t know why I am so emotionally attached to this, but I really want her to be able to eat by mouth for life, and not to have a tube that’s put in to her belly to eat. Many many many of the kids end up with tubes for various reasons. A big one is aspiration, where they take in fluid to their lungs while they eat and I am fairly certain this is already happening with Eloise. But I’m hoping she grows out of it.)
• For her to only have glasses, not any sort of blindness. (Most of the kids seem to have vision issues, with some actually having at least partial blindness.)
• For her to never have seizures or, if she does, only minor ones that never come back. (Many of the kids have severe epilepsy, some of it quite resistent to any sort of treatment. And the gene that is normally involved in that problem may or may not be partially affected in Eloise.)
• For her reflux to actually go away with age (Most of the kids I’ve heard, so far, have had to have surgeries and medications to deal with their reflux)
• For her to live mostly pain-free (Reading the long list of medications and surgeries and challenges these kids go through hurts your heart as you realize how painful life can be.)
• For her to love stories and make up some of her own (This is a nearly impossible dream, I believe)
• For her to have a “thing” she loves. (Like dancing or outdoors or Christmas lights or music.)
• For her to really “see” and interact with others and with kids (Most of the kids seem to be in their own world and uninterested in others, unless it’s around people they are familiar with)
• For her to smile and laugh often (I think right now my mama’s heart wants to see her smile and giggle like you see other babies do that, because she’s still in so much pain some days I want some reassurance that she will be okay)
• For her to be beautiful (I never realized I really cared about this until it was clear, now, looking at her, that her face really looks like those of her same deletion. It seems like so frivolous a desire, but it’s there.)

I wanted to add for her to find love and marry, but that almost seems too big of a wish.

After I was done with my laundry list of hopes and dreams, I stopped. I then turned in my mind to ask that image of Jesus I had what his dreams for Eloise were.

He paused. Smiled. And said simply, “For her to be loved.”

Wow.

I almost stopped breathing. I had to take that in, really take that in.

His dream was for her to be loved.

That simple statement was so profound.

• Whether or not she walks, he wants her to be loved.
• Whether or not she eats by mouth, he wants her to be loved.
• Whether or not she is happy and joyful through all the pain life brings her, he wants her to be loved.
• Whether or not she notices her caregivers or others around her, he wants her to be loved.
• Whether or not she ever learns to communicate in any form, he wants her to be loved.

That’s a great dream.

My dreams for Eloise, in many ways, are about me clinging to “normal.” Wanting my child to be as much like other kids as possible.

His dream for her is about her. And it is so profound. He wants her to be loved without condition.

Just that little time of prayer already showed me it’s going to be a long road for my heart to slowly change. I hope that someday I can honestly say that my biggest dream for her will be that she is loved.