Diagnosis Day

Sometimes it feels like a lifetime ago, and sometimes it feels like just yesterday.

SEVEN years ago today, we walked into our ultrasound appointment excited to confirm that we were having a baby girl. We walked out devastated, terrified, and anxious. Seven years ago today we found out our baby girl would be born with Down syndrome. We had an incredibly supportive team at U of M when we got the diagnosis and feel so lucky that our experience was as positive as possible. It didn't make it easy news to hear.

Seven years later, I can look back on what a gift we've been given. I don't always love Down syndrome, but I always love our Lauren and wouldn't change anything about her.

Today isn't Lauren's birthday, but it marks a rebirth in me and was the catalyst for so much change in my heart. Today marks the anniversary of my line in the sand, my life's before and after moment. I used to say that I was a different person before this day, and that I didn't know if I liked myself better before or after. Now, seven years later, I can say there have been changes in my life and in my heart that can only be by the grace of God.

I've learned to love more fiercely, believe in the impossible, ask for help when I need it (work in progress), and to see more of the good in this world.

Lauren, you were the child we didn't know we needed and we are so immeasurably blessed to be your family. Happy diagnosis day, baby girl.

Woe is me

This is a boring and whiny post about myself. I just need to get it out.

I had an upper GI scope and a colonoscopy last week. It ruled out the scary stuff, which is great. I have an esophageal ulcer and acid reflux. I started on Pepcid, so I'm hopeful it will help. I am also extremely frustrated because we still have no freaking clue what's up with my GI tract.

Today is a horrible POTS day, I ended up leaving work after only being there for 3 hours. My heart rate has been bouncing between 112-140 and I'm having GI issues again. I'm wondering if my body is still recovering from my colonoscopy prep.

I was obviously dehydrated after prepping for the colonoscopy, and my heart rate was being weird in the morning. I was dizzy and feeling overall crappy (pun not intended). Once they got me in pre-op, I was attached to the monitors and I thought they weren't going to do the scope because of my heart rate variability. Thank God the anesthesia team was familiar with POTS. They gave me a full bag of fluids before the procedure, and another during/after. I was on and off sleepy the whole rest of the day. The next day was a big event at work that was so much fun! I felt mostly okay, I sat down when I needed to. Sunday and Monday were fairly uneventful.

Then today I'm miserable. I am just so freaking frustrated with never feeling well. I feel like I'm too young and too "healthy" to be sick like this. I am fatigued beyond belief, I feel weak, I'm dizzy, my stomach is always upset. I can't do the things I love anymore (long walks, bike rides with Lauren, walking around Target) because chances are I'm not going to be able to finish and once I get started I don't have a choice. I tried two different medications that my cardiologist recommended. I started the first one and felt even more dizzy and had stomach pain. I added the second one to see if maybe it would help, but I was even more dizzy, extremely weak, my blood pressure seemed even lower, and I could barely function. I called my doctor yesterday to tell him that the meds were a no go, and he's having me come in tomorrow to better document my symptoms and hopefully try something else.

I feel beaten down today. I know plenty of people have it way worse than I do. But I am miserable. This is my current view, with my feet up, trying to feel even a little bit better.

Casting Vision

I had the amazing opportunity to go on a retreat this past weekend with the Down Syndrome Diagnosis Network, or DSDN. It was in Phoenix, AZ this year and 375 moms were present!

There were keynote speakers, breakout sessions, karaoke, a silent auction, and tons of friendships forged. I learned a ton. I am honored to serve as part of the medical outreach team. We will be focusing on speaking with OB/GYN providers on delivering a Down syndrome diagnosis, both prenatally and after birth. We're a pro-information organizations that will work to make sure that providers have updated and accurate information to give to new families at the time of diagnosis. We had a beautiful prenatal diagnosis story with very positive providers surrounding us. I wish everyone had that experience, but I know a lot of people don't. I'm hoping I can play a small part in changing that.

I also attended a breakout session by the executive director of Ruby's Rainbow, a nonprofit organization that provides scholarships for adults with Down syndrome to attend post-secondary (aka college) programs. I was honestly blown away. Liz Plachta is the executive director and co-founder, and she was extremely knowledgeable about the programs that exist all over the country. There are community college programs. There are a lot of programs for students who will live on campus ranging from 3 semesters to 4 full years. She talked about casting vision and believing that college is something attainable for people with Down syndrome. Attainable for Lauren.

In all honesty, we baby Lauren and don't expect as much out of her as we could and should. In a lot of ways she still feels like toddler, so we treat her as such. If she would lay on the floor somewhere and pretend to go to sleep (and sometimes actually falling asleep) we'd let her. If she wanted to eat from our plates at dinner, we'd let her. My list goes on and on. But taking part in Liz's breakout session was a hug eye opener for me. It was truly mind blowing. I am raising an independent, determined, and capable girl who very well may be a young woman attending college some day. And we all know that "some day" comes a whole lot sooner than we realize.  Even since I've been home (I flew in Sunday), I've tried harder to expect more from Lauren. She flopped on the floor Monday while Ryan was in an after-school computer class. I made her get up. Today during dinner she started eating my mom's food while we prepared her plate. I made her stop and wait for her own meal. Obviously all children have challenges, and even a year ago, these thing would not be near as possible as they are now. And every child is different. But these are things I know Lauren CAN do, we just don't encourage her to do them. We've been talking about her being a big girl now that she's in 1st grade. She's been very independent at school and her teacher has remarked on it more than once. Tonight at bedtime she put on her own pull-up completely unprompted.

It was truly like my whole world expanded this weekend. We need to start saving for college for her! This is something that when we received our prenatal diagnosis, I grieved this part of parenthood. I grieved because I'd never get to send her off to college, she'd never live independently. And I'm now realizing that these things are completely realistic goals for her, she's just going to need support to accomplish these goals.

I am casting vision over her life the same way I'm doing for Ryan, maybe even moreso. It's going to take some intentionality our part as her parents. It's most definitely going to take advocacy on my part, and in the future, some significant self advocacy. There will be some major hurdles along the way, and we can prepare for those and tackle those challenges when we reach them. But I can now say, and believe it with my whole heart, that Lauren will go to college. How awesome is that?!

https://rubysrainbow.org
https://thinkcollege.net/