When we learned about Jeffrey’s hypogammaglobulinemia diagnosis, there were so many anxieties caused by limited medical knowledge at that time. We had everything and lost everything at the same time; we could barely understand the diagnosis ourselves. Every day, we never knew what we’d wake up to. The pain of watching our child suffer and not be able to give him his health was excruciating.
No parent wants to see their child suffer or not know how to help them. When we started the Foundation, one of our main goals was to create a support network so that patients, their families, and physicians would have access to a built-in community. Today, we are proud to support families worldwide through our programs, research, and funding, in the hope that we can give children for generations to come a brighter, healthier future.
It's easy to put your child’s health and emotional well-being above your own, especially when faced with a new diagnosis. Remember, it’s essential to manage your own health and well-being so that you can be the best parent and advocate possible. Here are our top tips to find positivity amidst uncertainty:
Ask for Support
We know how important it is to establish a support system and ask for help when you need it. Call on friends, family members, and your physician and stay connected to your communities. You might feel like you can do it all, but stress can lead to burnout and other health problems down the line.
Communicate with Other Caregivers
We created KIDS Day, a fun-filled day away from hospitals and doctor’s offices where families can meet each other, connect, and develop friendships in a casual environment. KIDS Day is provided at no cost to patients and families. This is a great place to meet other parents who are managing a PI diagnosis and build your support network. Social media is another great place to connect and communicate with other caregivers to share experiences, suggestions, and support.
Reassure Your Child
It might be tempting to omit the truth from your child, but it’s important to talk and share a little at a time (in an age-appropriate way) so your child isn’t overwhelmed or frightened by visits to their physician or hospital to receive treatments. I didn’t want Jeffrey to know how scared I was for him. Talk and be honest in an age-appropriate way (share a little at a time). As Jeffrey’s constant companion through the worst times, I bore the brunt of his fear and frustration. Be a good listener and encourage them to ask questions whenever they need reassurance.
Take One Day at a Time
Remember, it’s a marathon, not a sprint. There were months when I spent more nights in the hospital with Jeffrey than at home. Focus on self-care so you can be healthy and as strong as you can be—for yourself, for your child, and your community.
Jeffrey taught us that to succeed in life you need three things: a wishbone, a backbone, and a funny bone. The wishbone is for the ideals, the goals, and the dreams; the backbone is for the fortitude and the courage to pursue them, and the funny bone is for the laughter and tears that are necessary for the little bumps along the road. We learned from an expert, Jeffrey Modell, about how to be a fighter and carry on.