Without a Crystal Ball

Our Journey through Chronic Illness

My son was diagnosed almost 3 years ago, but our journey with his health issues started before he was born. There were days early in the journey where I wished I had a handbook. There were moments when I wished there more instructions on how to navigate all the things that go in to 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 3 years in and 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 that 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 that 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, talk to a pastor, priest or therapist. Find someone to help you deal with this pain. You will not be a good parent or even a good person 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 that 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 that 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. When your child can pick up a food on their own, or can hold a utensil to feed themselves. Or when they can finally start drawing with a crayon. For many of our kids, they 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 and not an enemy, these professionals can become your best advocates. They can help you obtain services for your child you never knew existed, they will provide you tips and techniques to help your child grow and learn, and they will do everything in their power to not only keep your child alive but thriving. Most of these doctors have chosen pediatrics because they not only love the children but they LOVE the families. If you don’t like a doctor, it’s ok to get a second opinion. Find someone that you know you can respect and trust, and know they will be there for MANY years. They will become like family, you may have their cell phone numbers, and start calling the doctors by first name. 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 in 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. I was able to find an organization within my state specifically for families with Children with Medically fragile children. Finding other parents you can meet and talk to face to face is an amazing resource and very 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 very ugly things in people. You will hear ugly words from people that don’t understand, and you will find friends disappear because the diagnosis can be too much for people to handle. It’s super important to find a faith community, a form or spirituality or to seek out professional help to work through these emotions. Nothing can bring you closer to God than watching your child cling to life. When your child beats those odds, many of you will 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 that is professional, unbiased and nonjudgmental. Many parents go to therapists that 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 long term mental health and success in parenting.

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One thought on “My 5 pieces of advice for the Parent of a Newly Diagnosed Medically Fragile Child

  1. MaryEllen manske says:

    I loved this post.

    Like

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