Dear Friends of Feeding Matters,
When Jax was born, we were aware of his Down Syndrome diagnosis and were prepared for the traits we expected: low muscle tone, some heart concerns, and more. What we did not expect was at 8 days old to be walking back into the hospital with our first failure to thrive diagnosis. After 4 months of numerous appointments, medications, and sleepless nights and tears, we were back there again with our second failure to thrive. This was when we got Jax’s NG tube and officially began our feeding journey. We started feeding therapies, tested out different formulas, and tried every suggestion given to us to help Jax eat. After an open-heart surgery at 10 months old we hoped for feeding improvement. After a g tube placement, we prayed for better eating. After years of therapies, a tongue tie procedure, countless “practice” meals and food play sessions at home, we were still making very little progress. This was when I found Feeding Matters.
Life was such a blur at that time I don’t even remember how I stumbled upon the website. But what I do remember was the day my mentor, Heidi reached out to me. For the first time in years, as soon as we started talking, I felt heard and understood. Not just about the medical concerns, but the emotional struggles. It was obvious that Heidi understood what our family was going through.
Over the next few months, I read articles about feeding struggles, attended our first Feeding Matters conference, and continued to have chats with Heidi. I can remember talking to Heidi one afternoon, and asking her how she does it. Her response, “You just have to find peace where you are sometimes”. This is not what I wanted to hear, but it was what I needed to hear. It has taken me years to truly understand this statement.
As I reflect on the last few years, I have come to understand that I need to strive to have 3 main goals each day when it comes to our family’s feeding experiences.
1. Peace – I seek peace each day where Jax is with his feeding journey and how I can support him. I cannot fix this problem away, but I can go into each meal with a heart of gratitude with whatever success we have, no matter how small. And each night, I have to lay down and not replay the hard moments. I must wake up each morning with a joy of starting a new day.
2. Perspective – I have come to realize that I have to make a choice on how I set myself up to support Jax. I have begged and prayed for so many years for Jax to eat. And yes, I would love for him to, but I have started seeking positive food experiences for him and our entire family instead. By shifting my perspective to better match where we are in this process, I am finding that I am having more moments of celebration, and not so many of fear and disappointment.
3. Purpose – I have met so many amazing families through therapies, Feeding Matters, and just in my daily life that I wouldn’t have had to chance to meet if it wasn’t for Jax and his feeding struggles. I have realized that while I can’t control his pediatric feeding disorder, I can determine what my purpose will be in this journey. I choose to use my challenges and lessons I have learned to support other families going through similar experiences. I have been able to do this by mentoring families with the Power of Two program with Feeding Matters. I also choose to be open and educate others about what PFD looks like in our family by sharing Jax’s struggles and successes.
PFD is hard, it has been long journey, and our family is finding ways to navigate it as best we can. I am so grateful to have had the opportunity to connect with Feeding Matters to help us in our journey and grateful to all of you who support this very important organization. In this season of many feeding pressures, I hope you all can find comfort with where you are in your journey.
Family Advisory Council Chair, Feeding Matters
This is a guest blog while Jaclyn Pederson, CEO is out on maternity leave.