BlueQuail Celebrates Chromosome 21 - Down Syndrome Awareness
The opportunity to be outdoors with your children is not only a good idea or a healthy choice- it is a privilege.
My name is Courtney Morey and I am mom to Wells (4) and Annie (2) and we live locally in Fort Worth Texas. Our daughter Annie is one of "the lucky few" who was born with Down Syndrome. She is all of the good and pure things this world needs more of and has forever changed the way we live our lives.
Our journey navigating the pediatric medical world began when I was 19 weeks pregnant in May of 2020. I learned alone, at the beginning of the pandemic, in a cold Drs office, that Annie would need open heart surgery as an infant. She began receiving prenatal cardiology care in utero and while I was genuinely fearful of this news we felt so much comfort in who her surgeon was, the children's hospital we had in our very own city, and the success rate of this AVSD surgery.
Annie was born at 37 weeks when the umbilical flow from my body to hers stopped and thanks to close monitoring I was induced. I got to hold her for a few quick seconds before the NICU team whisked her away and that fierce love and promise to be her greatest advocate began right then. She went into heart failure a few weeks later and the fight to help her grow big enough for open heart surgery began.
We spent a lot of time in Drs offices, in the ER twice and even a hospital stay 3 days before Christmas for a heart catheterization to get a better look at that tricky little heart of hers. This was only just the beginning of our time in "sissy's castle hospital". January 29th 2021 we handed our beautiful blue eyed little girl over to the pre op team and began waiting on the 5-7 hour long surgery we had seen so many of our fellow friends go through. But Annie's surgery would not go like everyone else's. The hours kept passing by and we knew things were not right. Just before midnight Annie stopped breathing and a team began working together for almost an hour to resuscitate her. This part of her story is terribly painful and incredibly miraculous because Annie lived. The details are a bit too long to fit in a single blog entry, but she would be on life support called ECMO for 8 days and she would stun her intensivists and nurses by her heart beating again on its own. We would go on to spend several months in the hospital instead of the typical 5-12 days. Most Texans reading this will no doubt remember the terrible winter storm that February where the state of Texas had a major power crisis. That was mid CICU stay for us and for 4 days there was no driving home to get clothes, no ability to order food to the hospital and definitely no going outside to get fresh air or vitamin D in a time my nervous system needed it more than ever. I craved outside so badly. During all of this time Wells was not allowed to see his little sister, he actually did not understand that he still had a sister which was devastating. He was just barely 3 years old and not young enough to be clueless and not old enough to comprehend conversations.
Finally, when Annie was out of the CICU and strong enough physically, we wheeled her outside in her little blue wagon with all of her gear and she felt the sunshine for the first time in months. Wells was beside himself with happiness to see her. It was a moment I will tell my grandchildren about when I am an old woman. We took her in as a 3.5 month old in the middle of winter and brought her home as a 6 month old in spring.
After THE hospital stay we have since had 3 admissions for respiratory related illnesses that hit her recovering lungs really hard. In the first of the three I learned there was an outside patio off of the parents lounge in the PICU. The only times I would leave Annie's side I would go out there and eat good nourishing food to fuel my body and sit outside to get away from the sterile environment. All the harsh lights, all the scary beeps, a place so needed for my child's sick body, but also honestly hard to be in as the days rolled into each other. That is when I began thinking about how precious the gift of the outdoors truly is. I reflected on that winter storm and all the months in hospital rooms for all of us.
I am writing this right now from a beautiful view of Dripping Springs, TX on the last day of a moms retreat I am on with 24 other mothers of children with Down Syndrome. I have had three solid days of restoration and my number one focus while here has been "how much time can I spend outside".
We have done early morning yoga next to a creek, hilarious relay races on the lawn, and I have also simply laid in the sun like a lizard just listening to the breeze, the birds and the quiet. All things moms never get the chance to do. Nothing man has made can replace the healing gift that nature is for the human soul.
There are thousands and thousands of children and parents as you read this who do not get the privilege to go to the park after school, to eat that meal together on the back patio, for fathers to fish with their sons and mothers to take stroller walks with their daughters. It is because they are fighting for their health behind hospital walls. We thank God for those walls and that they exist, but that doesn't mean those stays aren't incredibly hard on them at the same time.
October is Down Syndrome Awareness month and it also happens to be some of the nicest weather our state gets. Choose to be outside with your children. Cherish this stage they are in and teach them that human connection in nature is one of the most undervalued gifts we have in this life. One intentional way I have devoted time outside is by planting my flowers around our home. The beauty of flowers does wonders for my mental health, I am drawn to them. When I was super pregnant during summer 2020 I would waddle all over our 1.5 acres early in the day or late in the evening and water. I remember my neighbor walking by and saying "that baby is going to be born with a watering can in it's hand!" Even in the last two years when I technically did not have the time to plant and care for these flowers daily in the Texas heat, I have pressed through to do it. Yes, it is another thing on my heavy load to care for, but they force me outside. The quiet I get opens up time to pray, to reflect, to brainstorm, to process. Most of the time I am out there Annie is sitting on her blanket with toys in the shade getting fresh air absolutely content. Wells can be found playing with rolly pollies, using his imagination, and most importantly not looking at a screen.
I want to encourage you to also intentionally find ways to bring your family outside. If you have legs that can walk, use them to walk the dog together. Seek out areas to explore that you have always wanted to in your town. Take a photo of the same landscape together with your child every day for 30 days and watch nature change when we simply take the time to observe it. Go outside and leave your phone. Our children will follow our lead and the way we prioritize spending our time can shape the parents they will grow to be one day too.