I didn’t expect to have a heart to heart with my youngest daughter tonight. Actually, all I really wanted to do was come home and go to bed. Yesterday was my birthday and somewhere around 3pm my headache went from bad to horrific. Since my new insurance decided they weren’t going to cover the only medication that has ever worked for me (Maxalt/rizatriptan) I was forced to try a new medicine.
As any migraine sufferer knows, once you find something that works, the last thing in the world you want to do is try anything else so this came as quite a blow. But, here I was about to try my new medicine. At first I didn’t think it was doing much, but we went out for sandwiches about 40 minutes later before bringing the kids all over God’s creation for their activities and I thought I was doing okay. Then I got in the car and it all went to hell from there.
I got clammy and nauseous and had a plastic bag ready in case I needed to throw up. I laid in the car while my daughter was at gymnastics, just trying not to puke. I managed to keep everything down until we got home and then there was just no stopping it. I felt awful. The pain from my headache seemed to subside, but I was nauseous and vomiting terribly.
Fast forward to today, which I spent in bed because a night of puking does wonders for a person with an autoimmune disease. I was shot and all I could do was rest. We had told the kids that we’d go to dinner, though, since we really didn’t get to celebrate the night before.
Let me start by saying my kids need to work on their table manners. They drove me nuts at dinner. On the way home my daughters driven the car with my and my youngest loves to hear stories from when she was a baby and when all of them were little. She asked who was the first person to hold her and I said that she was my only baby that the doctor immediately handed to me without the nurses taking to weigh and clean off, etc.
In hindsight, this is probably why she was my best breastfeeder because she started from right away. My daughter asked if it was the same for the other two kids and I explained that no, daddy held them and then the nurse took them to weigh and do a screening right there in front of us and then I got to hold them.
She asked why she was different and I guess I thought we’d been through it before and it shouldn’t be anything new. I don’t lie to my kids so I explained that my doctor knew how worried I was about her because her legs and feet were very twisted and we didn’t know if she’d walk or the extent of what was wrong.
I didn’t tell her I was afraid to look at her, but I was. I was petrified to see how bad it was, but I have the most wonderful doctor who had been with me through several miscarriages and three hellish pregnancies. She knew me. She knew I was afraid to see her, so she didn’t even let the nurse touch her. She handed her to me as she was, a little bloody and messy, but so so beautiful. I told my daughter that as soon as I saw her I wouldn’t let anyone else hold her and didn’t want to let her go.
I looked at her and she had tears in her eyes as she asked why her legs weren’t normal. While I don’t lie to my kids, I also don’t tell them things they don’t need to know at 9 years old. She doesn’t need to know that she had a twin that died and that she was crushed in utero. How would that help her? That would only leave her with questions and sadness. I explained that the way she was positioned in my tummy left her very cramped and her legs didn’t have room.
I know she had seem pictures of herself in casts. Maybe it was so long ago that she had forgotten but she had casts from her toes to her upper thigh from 3 days old to 6 weeks, that were changed weekly, each time adjusting her feet to turn a bit more.
I said to her as a mommy I was scared. I didn’t know that she’d grow up to be able to do all the wonderful things she can do now. She’s my kid that never stops moving. Currently her latest obsession is gymnastics and it’s all she wants to do and talk about. For the kid who our 20 week ultrasound we were told “many people years ago would have aborted for this because it often goes along with neurological issues” to my funny, crazy, spitfire who is always running, jumping and dancing…it’s been an interesting road.
I was sad, though, that she didn’t remember or that it felt like she didn’t know this. I have never hid anything, but at 9, it’s just not a huge part of our life anymore. She still sees the orthopedic doctor every so often because she has hyper mobility and they keep telling me as she gains muscle that will help (so far she’s still able to bend like a pretzel).
It just broke my heart to see tears in her eyes that she was born perfect. First, no one is perfect and though she knows that, she didn’t get that there was something really wrong. It led to a long talk about my relationship with her as a baby and how I kind of became overprotective and a bit of a baby-hog. I was so convinced she needed to be protected (don’t even ask me for what, looking back I’m sure I had some kind of postpartum depression) that I just wanted to hold her and love her.
My other two kids were amazing with her. They loved her from day one and wanted to help. I was so blessed because I didn’t have the whole sibling rivalry on top of everything else. In fact, they mostly fought over who was going to help get her a diaper or hold her, etc.
We are very lucky that my daughter is okay, though I get very stressed for each orthopedic appointment that they will tell me she’s going to need some kind of surgery. Our next appointment is in June and we’ll cross that bridge when we come to it.
Even though I wanted to go to bed, my conversation with my daughter was so important because I know she went to bed knowing how much she was wanted and loved and that from the very moment I saw her, I loved her with all my heart and never wanted to let her go. It doesn’t hurt that she also feels a little special that she’s the only baby the nurse didn’t insist on weighing, etc. before handing them to me. That bonding moment is something I’ll never forget.
I miss having babies. My kids send my over the edge on a daily basis, but there aren’t even words to describe the intense love I have for them. They are my everything. They are what I’m most proud of; what I’d do anything for.
So not really an autoimmune blog tonight, but this situation really hit me hard. Someday I know I need to tell her she had a twin…mostly because her siblings know and I don’t want her to hear it from them, but I worry that she’ll start feeling like a part of her is missing😦
These things keep me up at night.
Aside from still being nauseous, my joints are not the best today, but still not horrid. It’s like they are just saying…hello, we just want to remind you we’re here and we could start casing pain at any given moment. I know. I know. I’m taking it easy!
** Disclaimer: the pic above is not my daughter, but another baby that needed the same Ponseti Method of casting. My daughter’s legs were a tiny bit more severe in terms of the beginning stage, BUT…they were deemed not to be what is considered “clubbed feet” which is what can often go along with neurological issues. Hers were positional based on being crushed be her twin in utero. The pic was just to give an idea because it’s hard to describe.