5 Lessons I Wish I Had Known After My Child's Life-Changing Diagnosis

Getting a life-altering diagnosis for you child is one of the most heart-wrenching experiences a parent can endure. Our family was lucky in some ways for receiving our diagnosis when Finley was still a baby. We didn’t have to spend years searching for answers, doing test after test and appointment after appointment, wondering what the future would like, or if she would have a future at all. In other ways we weren’t so lucky. We were deprived some of that ignorant bliss, the time when we believed she would catch up with her peers and we could just enjoy her. We were in a fog of grief, denial, and heartache for a very long time and we did not appreciate the time in her life that could have been the best for us. I will never claim to be the most graceful at parenting a child with a disability, but here are a few lessons I wish I would have known when we received her diagnosis years ago.

1. Do not immerse yourself in your child’s diagnosis.

For the first year or so after Finley was diagnosed, our entire life became about her syndrome. We read about it, studied it, talked about it, joined every support group, read every single post and watched every video of every kid we could get our hands on. Our entire lives became about this disease. Don’t get me wrong, some families thrive and live happier lives when they make their child’s diagnosis their cause and mission. I envy those families for their bravery and strength and fight. But, it isn’t wrong to not be that family. It isn’t wrong to just live your life, to just keep going and adjusting and loving your kid. You aren’t any less if “just surviving” is all you have in you.

2. Do not overload your schedule in the beginning.

Unless your child received a diagnosis that requires immediate medical attention, you do not need to make every suggested appointment right away. Give yourself some time to breathe. Try not to add the burden and the stress of medical appointments off the bat unless they are necessary for your child’s well-being today. In my experience, it’s best to give yourself some time to learn to cope with your new reality before putting those coping skills to the test.

3. Do not compare your child.

I am still learning this one. This is hard for parents of typical children to not do, let alone those of us with children who have disabilities. It is pretty common in communities that share a diagnosis for the parents to give advice, compare notes and ask about other’s children. It is very helpful to have this kind of support, but it also becomes easy to start stacking our kids against each other. The lines get blurred and we often forget that even though our children share the same syndrome, they are totally different.

4. Do not dwell on the future.

I think for most families, thinking about their child’s and family’s future after a devastating diagnosis offers the hardest blow. The future you imagined for your family has been decimated. In the beginning, and many days throughout your journey, you will grieve the life your family has lost. You will often be scared about what is to come and worry about how you will care for your child as they grow. It can become so heavy and daunting that it is important not to dwell in that worry. Survival is about living one day at a time. One of my favorite verses is “Therefore, do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.”

5. Do not have any expectations.

This is the thing I wish I would have known the most. Do not have expectations, not of anyone. Some of life’s greatest disappointments are from expectations not met, and greatest joys, from the unexpected. Do not set expectations for your child, good or bad. Don’t expect your child to have every ailment associated with their diagnosis, or behavioral problem, or delay. Don’t expect them to hit certain milestones on your timeline or gain skills quickly or seamlessly. These things are not guaranteed for any child. When you are expecting your child to be one way or another, you are likely to either be disappointed in the future, or heartbroken in the present. Be proud of the strength they possess for the fight they endure daily.

Do not have expectations of your family and friends. There will be those who will let you down, and those who pleasantly surprise you. There will be some who are there for you 100%, and those who run because your situation does not give them the good “feels.” Protect your heart, but do not let it harden when someone does not give you what you envisioned. Don’t expect anyone to know what to say or do, just appreciate the ones who care enough to try.

Whether you are just getting on or have been riding the roller coaster for some time, try to enjoy the ride.