This post features guest blogger Samantha Nuckols, who is a parent of a medically complex child and a June Jessee Memorial Foundation (JJMF) community member. Samantha shared her experience during a recent JJMF event, and we are sharing her important message here to reach more families. If you would like to find out more about how the JJMF can support your family, please visit our website at www.junejessee.org.

I am honored to share our family’s story and how the June Jessee Memorial Foundation has supported us along our path. I am the mother of a medically challenged daughter, Sadie Paige. Sadie made a grand entrance into the world at just 25 weeks weighing in at 1 pound 7 ounces. Due to her prematurity, she spent 203 days in the NICU. She was diagnosed with many medical complexities that eventually led her to receive a trach at 5 months old and a g-tube, or feeding tube, at 9 months old.

On top of this, during Sadie’s 8 month NICU stay, my husband was transferred to St. Louis, and Sadie was transferred to the NICU at St. Louis Children’s Hospital. As you can imagine, the move was very difficult. We were brand new to the area without any friends, family or support system, and we had a newborn who had lots of extra medical accessories and issues. Luckily, St. Louis Children’s Hospital gave us a lot of resources prior to discharge, and I heard about the June Jesse Memorial Foundation and all the services they provide to families like mine.

My first JJMF experience was a mom’s night out. I will say I was intimidated and almost didn’t go. As a parent of a child with medical complexities, you are exhausted by the end of the day and it’s always hard to go to something new, where you aren’t sure you will “fit in”. That was definitely not the case. I walked into that event and was immediately welcomed with big arms. This was before Covid, so hugging was still acceptable. It was at that event that I met my now dearest best friend Amy and many other moms struggling with the challenges of caring for a medically complex child. While everyone’s challenges weren’t exactly the same, we were all on the same page. We talked and laughed about our struggles and also about all the joy our kids bring us. I remember driving home that night calling my mom in tears because for the first time since my daughter was born, I didn’t feel alone. I felt like I belonged and that others understood me and what my family was going through. The JJMF gave me the opportunity to gain this new support system and help with mental burnout.

Everyone with a medically complex child understands mental burnout. This burnout is intense since the level of care required for our children is so demanding. Having a trach and g-tube, Sadie required around the clock care and supervision. This meant someone had to physically be awake with her even while she slept at night to monitor her oxygen levels, suction her trach, give her g-tube feeds and constantly watch her monitor settings. And this person had to be trach-trained, so no babysitters, friends or family. Therefore, my husband and I needed to be “ON” 24/7. That is where the JJMF stepped in, by providing a bit of relief from what otherwise could leave us feeling so overwhelmed and isolated.

I will say the mom’s night out event was my most favorite JJMF event, but our experience with JJMF certainly did not end there. In addition to supporting parents, the foundation also provides great support to our children.

The JJMF provided us with 2 grants to continue sign language therapy services in the comfort of our own home during this pandemic. With Sadie’s trach, sign language was her only form of communication, so to be able to continue the sign language therapy at home during scary Covid times was essential. Sadie was soon signing the alphabet and books as we read.

In addition, we have since attended virtual music therapy classes which are facilitated by a music therapist specifically trained in neurological music therapy. The therapist tailors the class to the unique needs of children in this group. And, since the session is offered virtually, it makes it much more convenient and accessible for families to join in the comfort and safety of their own homes without needing to worry about packing up any medical equipment, or extra items their child might need for an outing.

Now, I have a very happy story to share. Since first interacting with JJMF, Sadie has undergone several major air reconstruction surgeries to repair and rebuild her trachea. This past August, they were able to remove the trach and she is finally breathing on her own. The day we got to leave the hospital with Sadie, without her trach, was the absolute best day of our life. It was a pure moment of joy. We have been through so much as a family, but that day will forever be a day we remember. It was the first day of a new life with so many more opportunities for Sadie, including finally gaining a voice. It has been a sigh of relief having one less medical accessory and actually hearing her develop a voice.

It is strange, but for some reason I expected her to come out of surgery talking, so the speech therapist had to remind me to give her time. Since this beautiful trach removal day, we have been able to use the grant money we were given through JJMF to continue speech therapy at home. The therapy is helping us make that transition from solely sign language to making sounds and forming words. It will continue to help us with her verbal speech as we still have a long road ahead of us, but the most important thing is to hear your child say, “mommy” and “I love you”.

My daughter Sadie still has many medical obstacles to overcome, but we are grateful that we have the local support and love we need because of the JJMF.