5 Things I Want to Tell New Parents of a Medically Fragile Child

My son, Von, was diagnosed almost three years ago, but our journey with his health issues started before he was born. There were days early in the journey when I wished I had a handbook. There were moments when I wished there more instructions on how to navigate all the things that go into parenting a child with special needs. I remember the first time I even wrote those words down on paper and I thought, Can this even be real?

Now three years in, I’m getting a better grip on the reality, and I’m realizing that through my own experience, I could potentially help others starting the journey. Here are a few pieces of advice from one parent to another.

1. Take time to grieve.

We all had expectations and thoughts about what we thought parenting would be and look like. We never imagined it would include ventilators, tubes, feeding tubes, catheters, ports, nebulizers, daily injections, multiple specialists, numerous therapists and for many of us, full-time nurses. We thought life would look like the cards we get in the holidays of families smiling. We took for granted our kids would walk, talk, roll over, sip from a straw, write, read and know how to socially interact.

When these things don’t happen, or if they happen slower than the typical child, it’s OK to be sad. It’s OK to grieve. Cry, scream and find someone to confide in. Go through the grieving process, and know the grief will come in waves. There will be days when things are great and others when you are so sad you can barely move. Work through the pain and the emotions. Read books on grief and talk to a pastor, priest or therapist. Find someone to help you deal with this pain. You will not be a good parent when you are constantly sad and depressed.

2. Celebrate every milestone.

Most of our children are complex, and doctors will never be able to tell us what the future holds. Von’s doctors always tell us, “We don’t have a crystal ball on his development.” A child who is medically fragile has walked a course in life none of us can comprehend.

There have been surgeries, labs, pokes, some have been on dialysis, chemotherapy and others have spent time on life support. All of these illnesses take a toll on the body and the brain.

When our kids’ health does become stable, always remember how far they have come. Try not to get stuck in the comparisons of what a child who has not been through these issues can do. They have spent their life simply growing and learning. Our kids have spent their lives fighting to live and battling disease.

When your child takes that first step, even at 3 years old, jump and scream. If they hold their head up at 18 months, celebrate! If they can finally use a straw at 4 or 5, or if they are able to potty-train in grade school, make sure to take a moment. Don’t forget the small milestones, too. Many of our kids may never do any of these things, so even being able to sit unsupported is a huge accomplishment. No matter what you are facing, stay away from comparison and simply celebrate your child in the moment as they reach a new milestone.

3. Embrace and respect your medical team.

It’s hard to have so many doctors and nurses in your life. Sometimes you will feel like you have no say or that you are not the one making choices. Sometimes you won’t be able to make all the choices because the needs of your child will exceed your expertise. Early on I fought with most doctors and nurses. I was angry for being in this place. I didn’t want so many people telling me what to do. I’ve realized in order for my child to thrive, I need their advice, guidance and support navigating the system.

If you embrace them as a part of your team, these professionals can become your best advocates. They can help you obtain services for your child you never knew existed, they will provide you with tips and techniques to help your child grow and learn, and they will do everything in their power not only to keep your child alive but thriving. If you don’t like a doctor, it’s OK to get a second opinion. Find someone you know you can respect and trust, and know they will be there for many years. They will become like family. It’s all a part of being in this community. You might even start hugging them when you see them every few weeks or months. The faster you embrace them, the better the experience will be.

4. Get connected to the medically fragile community.

There are web pages and Facebook communities for just about every single disease out there. Starting out online can be a great place to go. However, over time you may feel you need to find resources within your own community. Finding other parents you can meet and talk to face to face is an amazing resource and quite healing. It can be scary making friends with others on this journey because the reality is some of our kids won’t make it to adulthood. However, these friendships can be invaluable. You will have someone to talk to about labs, nurses, doctors, therapy, medications and the education system. You may not find your best friend in the community, but you can absolutely find support and friendship from others in this journey.

5. Find faith, spirituality or some form of self-help.

This is going to be a long journey. It’s going to test your thoughts about the world, human kind and the state of the medical world. You will see ugly things in people. You will hear ugly words from people who don’t understand, and you will find friends disappear because the diagnosis can be too much for people to handle. It’s important to find a faith community, a form of spirituality or to seek out professional help to work through these emotions. I believe nothing can bring you closer to God than watching your child cling to life. When your child beats those odds, many of you might realize there is more to this world than ourselves. I saw my son almost die. I had doctors tell me there were no explanations for him being alive. It was then I knew God had greater plans for him.

If it’s not God you seek, make sure to find someone to talk to who is professional, unbiased and nonjudgmental. There are therapists who help families deal specifically with these issues. No matter what your path, remember that it’s a long road and having something to fall back on will be critical to your longterm mental health and success in parenting.

Follow this journey on Von’s Super Hero Facebook page.

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