The Wake of Mother’s Day

Moving into Ava’s second year, I wasn’t really thinking about how old memories & emotions might crop back up as I start hitting “one year later” marks…but here we are. We didn’t get Ava’s diagnosis till this past January, but caring for her was hard almost from the beginning. 
Ava was hard to feed almost from the start, but it was 2 1/2 weeks in – Mother’s Day – that she finally stopped filling her diapers and I knew we needed help. I remember talking to Craig on the phone around 1am (he was still working), just crying because SHE wouldn’t stop crying and I felt helpless. I knew how to feed a baby. Something else was wrong.
The next day, we started Ava on bottles and she started gaining weight again. It was a messy business, but she ate.
(So, this is when I interject that I try to avoid talking much about bottles and breastfeeding online because people sometimes have strong opinions about all of it, one way or another, and are easily offended or easily offend or whatever. I am not in any way trying to make a point about how you should feed your baby. That’s up to your family. So, if you can suspend possible temptation to get sidetracked by baby-feeding opinions for the moment, I will go on…)
I was so rattled by having to put her on bottles. Craig actually had to show me HOW to give her a bottle because I almost never gave them to Elijah and didn’t know how. I remember a few days later being told that we might have to bottle-feed her for 3 weeks before she’d be strong enough & have enough oral therapy to figure it out…and that sounded like soooo long.
Little did I know we would never go back to breastfeeding. 
Little did I know, a year later, it would still take 30+ minutes and 3 burp cloths to give her a bottle. 
Little did I know the earth wouldn’t stop turning if Ava was bottle-feed all year, and that even with all the extra dishes and laundry that it’s created, we would still be getting up in the morning and doing this life together as family and loving each other and finding ways to have fun anyhow.
This is all sounding a little overdramatic. Bottle feeding is definitely NOT earth-stop-turning devastating. But you know how it feels sometimes when you care about something and/or someone and are just sure things are going to happen a certain way and then you find you’re living in opposite-land? 
Little do we know.
Anyway, while I remember that occasion well, I didn’t actually remember until this weekend that it was Mother’s Day last year that Ava’s feeding problems really started escalating. And honestly, I don’t think I’m going to let myself attach this minor trauma to Mother’s Day in particular. That would be a quick way to ruin the day, and for what? (This should help: I just looked and we didn’t take a single picture last year on Mother’s Day. I found ONE from the next day of Ava crying. Good times!)
I guess the reason for my contemplation on this “anniversary” is this: The move to bottle-feeding was the first time last year that one of my expectations for Ava would end up feeling shattered. 
I wish I could say “hopes” instead of “expectations,” but it’s not the truth. There were so many things I assumed would be a certain way, and have turned out to not be so.
This is all coming out quite sad. And the truth is, I don’t have the emotional energy to get sad every time I remember a piece of trauma from last year. 
As much as “anniversaries” tend to resurrect old memories and feelings, they can also have a way of helping me put them to rest. Maybe this one can help me put to rest that initial discovery of disappointment.
It’s a slow process of adjusting my heart and mind to what IS rather than holding on to what I wanted. I know the more I adjust to and accept reality, the more I will be able to see the good things and the joy God is holding for us in the midst of it. 
I guess our hearts are a messy business too, like the bottles. We’ll get there. The good stuff is getting in. Just a lot of extra work and a good bit of drooling along the way. 🙂

Becoming the expert

Other parents of special needs kids have already told me that I’ll end up being the expert on my daughter, and that we should learn to be confident in this and make sure we feel good about the decisions made for her.

Today’s appointment felt like I step toward that, I guess. To be honest, I sort of spent $40, 2.5 hours and probably $5 in gas to be told we should try…drumroll…1 ounce of soy toddler formula to every 3 ounces of Alimentum, and see if she can transition to that without an allergy.

A waste of time? I don’t know. Part of me though so, because we really could have sorted that out on our own and for some reason I thought the answer coming from this specialist with a good reputation (and I do like him just fine, really) would be a little more complex for our, well, medically complex child.

But it was probably fine this time that we went through the trouble and the copay to do it, because I left feeling like we’ve been to enough allergists and other specialists now that we know how to do some low-risk trial & error with Ava’s feeding on our own. I know we’ll end up needing to go back and I really do respect doctors. I’ve seen friends go through med school and it’s so much work. But we are becoming expert enough with Ava that we can try things that make sense to us without a doctor’s “permission,” and that feels good. Hopeful. Empowering maybe? Something I didn’t want to learn to do.

And we keep trudging along the slow road…

Moment of truth

In the waiting room at the GI specialist, hoping he will show us the magical path away from the tedious, messy, expensive bottles Ava was on so much of her first year. I’m trying not to get too excited because I know it will still be a long and slow process till we can fully pack away the bottles…but here’s hoping for at least a step forward. I’ve been dreaming of this day for months. Not even kidding.