When I was 20 weeks pregnant, I received a Down syndrome diagnosis for my daughter Zoe. At the time those words and her diagnosis felt unbearably heavy, I couldn’t imagine what it meant for our family and for Zoe’s future. A few weeks later we found out that Zoe would need heart surgery within the first few months of her life.
For you formed my inward parts; you knitted me together in my mother's womb. I praise you, for I am fearfully and wonderfully made.
Zoe was born at 37 weeks and spent 1 week in the NICU for monitoring. We were sent home to watch and wait for her to go into “heart failure”. I remember when the doctor said that statement so casually like it’s not a big deal, just know all the signs of heart failure and watch her breathing. We were terrified to say the least.
During this time, I kept feeling so much guilt and pressure to start Zoe’s therapy ASAP. How was I going to fit one more thing on my plate? We were in and out of the hospital and constantly busy with doctor appointments for her.
At 2 months old all the “heart failure” signs showed up; retractions, throwing up, fussy and sweating. We were admitted into the hospital again. The doctors hoped they could just change up her medications, get her to gain weight and send us home; but Zoe had other plans! Zoe ended up going into cardiogenic shock and was scheduled for emergency heart surgery. It was a very overwhelming and emotionally exhausting time for our family. In true Zoe fashion she rocked her surgery and she left the hospital a few weeks later stronger and more determined than ever before.
At 3 months old we were home again with a mended heart and new goals of at home Early Intervention therapy. During our first appointment, I remember the therapist being so kind and understanding of how overwhelmed I looked. I was trying hard to take every note and understand every activity she was doing with Zoe. The therapist ended the session with a list of a few therapy tools I should order that would be helpful. For some reason that list pushed me to my emotional breaking point. Everything we had been through caught up to me in that moment.
It was something as simple as a list of items, but that list felt like a huge mountain to cross over and the thought of physically adding something to my plate felt impossible. That moment brought me to my WHY!
Over the last 3 years I have leaned on families in the Down syndrome community for advice, support, prayers and hope. This community has been a lifeline for me and my family when our world felt heavy and overwhelming. Zoe’s Toolbox is my way of giving back to this community that has given so much to me and my family.
I remember being so discouraged anytime we missed a therapy session. I would be afraid that Zoe was missing out on continued developmental growth. It would have been a huge blessing at the time to have the tools and the knowledge to feel less pressure on our scheduled therapy sessions. These tools will empower parents to work on their child’s developmental growth in between scheduled therapy sessions.
Every baby born with Down syndrome will have their own unique experiences and abilities. Some will have many medical procedures in their first year, and some will be born never spending a day in the hospital. For any diagnosis the first year is the hardest to navigate, and we are here to be a box of sunshine to those families.
Our boxes are filled with PT, OT, feeding and speech tools, as well as sensory toys that are geared towards children 6 months - 2 years of age, and are most commonly used for children with Down Syndrome.
The Down syndrome community is my why! My Zoe is my why. She is our ray of sunshine and one of the most beautiful gifts I have ever been given. Our hope is that these tools will help you connect more with your child and help them shine their light even brighter.