• Skip to main content
  • Skip to footer

Graham Party of 7

A family of 7, advocating for Down syndrome

  • Home
  • Bailey’s Box
  • Our Podcast
  • GP7 Consulting
  • Blog
  • About
  • Cart

10 Years Later: What I Wish I Knew…

by Shauna Leave a Comment

Share
Tweet
Share
Pin

Just short of nine months after I married my high school sweetheart, we were welcoming our first child into the world. I had just turned 25, we had been together since my freshman year of high school, and we had our whole lives ahead of us. My pregnancy was mostly uneventful. Everything was “normal” and I had declined all prenatal testing because it honestly wouldn’t have changed the outcome anyway. And I was 24. Why wouldn’t everything be OK?

We weren’t in recovery any longer than 10 minutes, when the doctor came in with a strange look on her face. All I can remember her saying was “we think your child might have Down syndrome” and then everything after that is honestly a blur. I remember crying. My husband was crying. My sister was crying. My mom tried to be strong for us all, but she was fighting back tears. Being so new to the world of Down syndrome, I immediately imagined an adult who wasn’t even remotely able to care for herself. I was so uneducated about the diagnosis that every imaginable worst-case scenario was in my head. I’m still embarrassed at myself for my thoughts in those first few hours after she was born, but as we are about to celebrate her 10th birthday, here is what I wish they would have told me:

Congratulations on the birth of your daughter.  Regardless of the fact that she has a diagnosis of Down syndrome, she is a beautiful little girl. While it is understandable that her diagnosis is all you are going to think about for about the next three months, that will eventually fade and she will just become your daughter. I can promise you won’t feel this way forever.

You are going to hear everything in the entire universe that could be wrong with your child at birth. Her heart. Her ears. Her eyes. Her stomach. The whole nine yards. That is the job of your physician. The American Academy of Pediatrics has separate guidelines for babies with Down syndrome that they need to use and follow. It’s so incredibly hard to hear all of that right away, but it’s their job to tell you. Medical terminology will become your second language. You will become an expert in documenting it all and working with a team of people to ensure your child has the best possible outcomes. 

You will have the opportunity to educate a lot of people. People will not know what to say when you tell them your child has Down syndrome. Professionals will sometimes use wording that causes you to cringe. Some things may come across insensitive or rude, but try to remember that most people have a kind heart and are trying in their own way to be supportive and helpful. If they say something that offends you, take the opportunity to educate them.. If you don’t, who will?

You are going to meet a tribe of people you didn’t even know existed. An amazing group of parents who have children with Down syndrome is out there waiting for you to reach out. People who have already been through the situation or battle you are facing who would be more than happy to provide advice and support.

Your entire view of the world is about to change. Life with Down syndrome happens at a slower pace and there is a little more unknown. Unknown how they will react to certain things or situations and you will become a master at managing in the moment. You will stop to enjoy things a little more and all those incredible milestones you will document in a baby book will be much more impactful when you know just how hard they worked to get there. 

You will learn to live in the moment. Why? Because sometimes it’s too overwhelming to think about it all at once. I’m not suggesting to not have a plan, but know you don’t have to have it all figured out right now. Take deep breaths. Take one day at a time and trust in God’s timing.

You will become an amazing advocate. An advocate not only for your child, but other people who have a similar diagnosis or challenge. The way you raise your child will inspire hope for other new moms who have littles with Down syndrome. You will play an active role in redefining how the world views children with Down syndrome. You will naturally begin to find the positive in situations and no problem will be too big to try and solve.

Last, but not least, your child will accomplish anything he or she sets his or her mind to. You are going to be your child’s inner voice. There may be a time when you are also your child’s only voice. Make sure to set the bar high and challenge everyone else to do the same. As the late Robin Williams said, “No matter what people tell you, words and ideas can change the world.” 

First published on Her View From Home.

Filed Under: Down syndrome Tagged With: Down Syndrome

Reader Interactions

Leave a Reply Cancel reply

Footer

Graham Party of 7

Graham Party of 7

youareworthitllc

Bailey was super excited this afternoon when her f Bailey was super excited this afternoon when her friends stopped over for a visit! They brought her all of her favorite things too. It was definitely the encouragement she needed and I’m so thankful for these girls and their families! Bailey has such an incredible class and these girls have made such a big impact on her life! ❤️
We get to go home TODAY!!! 🥳 As soon as Dr Cus We get to go home TODAY!!! 🥳

As soon as Dr Cusik came in, she said - I’m going home today and I want this out (pointing to her arm). He got a kick out of that. 🤣😂

The doctor was super impressed at how quickly she’s bounced back. When the surgery scheduler called, they said we’d be here through Sunday. When he talked to us before surgery, he said plan a week.  She blew that out of the water by two whole days!

She will continue on a soft diet until her follow up, which will be 7-10 days. 

Now we wait to be discharged. In all my hospitals experiences, discharge is never a fast process. Whyyyyy can’t this be a faster?! 🙈
Bay is doing better again today! ❤️ At one po Bay is doing better again today! ❤️

At one point in the night she hit the call light without telling me. When they came in, I was a bit confused. She went on to tell them her IV was falling out and they should just take it out. Narrators note:  it was not falling out nor did they take it out. 🤣

She slept well until about 5am and then wanted her iPad. She’s been going to the bathroom a lot more which is great news. She has been 90lbs for about the last 2 years and last night she was 93lbs. She’s on steady IV fluids, so it’s good that everything is starting to work and she’s flushing it all out of her system. She hasn’t had the strong pain meds since yesterday and is continuing to walk around like a champ. 

The plan is to stay on 8 ounces in 8 hours through this afternoon. If she keeps it all down, they will consider allowing her to have more “clears” without restriction. 

To go home - she needs to be able to have an unrestricted clear diet, eat soft foods and have a bowel movement. 

When surgery was scheduled, they said discharge would be Sunday. That’s not going to happen now, but we are hoping for more progress today. 🙏🏻
Things have really looked up since this morning! W Things have really looked up since this morning! We are hoping that by tomorrow they let her drink a little more (current max is 8 ounces in 8 hrs) as well as introducing other soft/clear foods. 🤞🏻

After our afternoon walk DOWNSTAIRS (woohoo 🥳), Bailey did something else that was pretty EPIC!

She picked the items for her next ⭐️Bailey Box⭐️! We intended this to be her summer box, but with all the things happening, the launch was delayed a bit. 

As it’s a little later than normal - there will be limited quantities!

So - who’s ready to see what will be inside?!
Load More... Follow on Instagram

Want to stay in the loop?

Sign-up below to keep up to date on when the next Bailey's Box will release in addition to everything Graham Party of 7! We are SO glad you are here!

Copyright © 2022 · Author Pro on Genesis Framework · WordPress · Log in