Last year, our family and two other families took a week-long trip to Disney World between Thanksgiving and Christmas. We spent a whole year working with a Disney-certified planner to plan the vacation down to the minute. We knew where we were going to stay, what parks we were going to go to each day, and what meals we were going to eat. Everything was planned because we knew we only had a week and needed to make the most of every minute.
The trip started off great. Just as planned. We made it to the park with no difficulty, and the first day at Magic Kingdom was everything we anticipated. Our FastPasses worked, we rode every ride we wanted to ride multiple times, and we managed to polish off a few Dole Whips. We finished the day exhausted and ready for day two to be just as fabulous…
Unfortunately, a cold front blew through while we were dreaming of Mickey and Goofy. We woke up to cold, rainy weather and were supposed to spend the day at Animal Kingdom. Our cute matching t-shirts were quickly covered with any long-sleeve thing we could find in our bags. We piled on every piece of clothing we had and made our way to the park, but instead of racing toward the water rides, we stood in line to see . . . wait for it . . . a show!
We also discovered some of our kids who thought they’d like the drops and turns of rollercoasters preferred the more laid-back rides. Now instead of all of us zipping from one rollercoaster to another, our group started to divide up. Some of us stayed with the thrill-seekers and the others took the less adventurous kids to some of the calmer attractions.
What we thought was a fool-proof plan (because we’d consulted so many experts and people who had “done Disney” at this time of year) got turned upside down because of things outside of our control.
Now let’s take this Disney trip and put it into a much bigger scenario: having a child.
When you hear those magic words, “You’re pregnant” or decipher the lines and symbols on a pregnancy test, your mind automatically floods with different images—holding a new baby in your arms in the hospital, teaching that baby how to walk, walking that baby into school for the first time. You might start following baby trackers that announce, “This week, your baby is the size of an avocado.” You probably start thinking about all the things you’ll need to do in preparation for this new life to enter your family.
Now what if things don’t go as expected?
What if, at one of the sonograms when you’re supposed to find out the gender of the baby, you are told your baby has Down syndrome? What if at birth your child’s brain is deprived of oxygen for a split second, and now your child has cerebral palsy? What if your child appears to be developing just fine until one day you notice he isn’t using words and starts pulling away, and you find out your child has autism?
Happy and positive expectations are normal. Most of us don’t spend our pregnancy worried about the what-ifs. We don’t anticipate anything but what is delightful, comforting, and typical. It isn’t until that normal becomes shaken that we find ourselves spinning in doubts, worries, and discomfort. We find ourselves developing a new plan. We find ourselves scrambling and wondering how everything is going to turn out. The good news is we’re not alone, and there is someone who knows exactly how things are going to work out.
If you’ve found yourself in this situation, or have a friend who finds herself in this situation, here are a few things that might help normalize the chaos.
Spiritually/Personally
- Give Yourself Permission to Grieve
- Grief is a process (Shock & Denial, Anger, Depression & Detachment, Dialogue & Bargaining, Acceptance, Return to a Meaningful Life) but not a linear process. Just because you’ve passed the Anger stage doesn’t mean it won’t return when you least expect it. Grief is ongoing, but it is not intended to be a landing place. Don’t rush the process, but surround yourself with people who will meet you where you’re at yet challenge you to keep moving, even if it is just a tiny step forward.
- Find a Support Network
- While your first inclination might be to withdraw and pull away from all your groups because of the change in your family, you need support now more than ever. It might be uncomfortable at first because your friends don’t know what to do to help, and you might not know what help you need. That’s okay. Learn to lean on others when you don’t have the strength to hold yourself up.
Practically
- Enroll in the Medicaid Waiver Program
- Texas Medicaid Waivers provide services for your child. Using Medicaid funds, these waivers cover long-term care and community-based services (including respite care, nursing care, home modifications, and certain therapies). Most of the waiver programs have a long wait list so the sooner you get on the wait list, the more likely your child is to come to the top of the list when the services are needed. Visit this website for more information and to sign up for the waivers: https://www.navigatelifetexas.org/en/insurance-financial-help/texas-medicaid-waiver-programs-for-children-with-disabilities
- Start a File
- It is very likely your child will have a complex medical history within the first few months of diagnosis. In order to keep your child’s care consistent, it’s wise for you to have a medical file for your child. This file is something you can share with physicians, therapists, or anyone who might be caring for your child at any given point.
Following a diagnosis, you’re in a new club. It might not be a club you would’ve asked to join, but it’s the one you’re a part of now. Learn to embrace the change moment by moment. Don’t be scared to admit your fear, but at the same time, don’t be scared to enjoy the fun moments that lie ahead.
Remember, “Every good and perfect gift is from above, coming down from the Father of the heavenly lights, who does not change like shifting shadows.” (James 1:17)
If you find yourself facing a diagnosis and are without a community to support you and your family, we would like to walk with you, encourage you, and help you navigate the winding road ahead. Please contact us at gift@stonebriar.org.
