Just got your diagnosis? Here’s 5 things to do next:
1. Research
Researching your child’s disease will educate you and make you knowledgeable to help provide better care for your child moving forward. Knowledge is power. With all diseases and disabilities in mind, there will be certain ones that will require more in-depth research. For instance, my son has a rare, genetic metabolic disorder that only 500 kids in the United States have. Some people will tell you, “Don’t research or read to much into stuff.” But, if you are anything like me, you’ll want to know what to expect or what is to come. You’ll want to know what testing should be done and specialist your child should see each year. You’ll want to know the best plan for them or the best hospital to take them to. Research can be key.
2. Resources
This is a big one. Depending on what your child’s diagnosis is will depend on what resources you may need. There are financial resources, support groups, therapeutic activities. There are places out there like The Assistance Fund or NORD that will help provide financial assistance to families with rare diseases that they recognize, country wide. Autism Speaks gives many resource suggestions for families dealing with Autism. Caring for a Cause (a local non-profit) does fundraisers for children with chronic or terminal illnesses. Focus + Fragile Kids (based in ATL) provides family fun events, camps, support groups and respite care for families and their children with fragile or complex needs. You can start by typing in your child’s disease and the county you live in, then the state you live in, etc. Chances are, if you live near a big city, your resources will be greater.
3. Find your tribe
This is going to be important for your sanity. You will probably have friends with typical children or maybe you have already lost some due to your child’s disability but finding people who truly get it will be your comfort zone. Let’s face it, it is hard for us parents of children with medically fragile children whose immune systems are compromised or low to make playdates or to play at specific public places. Sometimes, we have to cancel thirty- minutes before a planned activity or event. Sometimes, we had a rough night with our child or are stressed to the max and just do not have the patience for an outing that day. Sometimes, we want to text someone and say, “* So and So* fed the bed last night, or *So and So* spend the night screaming, and not be judged and have someone on the other end that completely understands. This being said, some of your friends might truly step up and WANT to understand what you go through, and you should let them.
4. Cope and Self-Care
This is crucial. You will need a coping plan. A coping plan might look like taking five minutes for yourself a day to go outside, stay up an extra thirty minutes at night and read a book, taking a hot shower and screaming. You need to know, it is okay to grieve and it is okay to hurt. There is no right or wrong answer, as long as you feel your mental health is up to par. There is nothing wrong with seeking counseling, admitting your overwhelmed or reaching out for help. I say this because if YOU are not well, you cannot be the best YOU to care for your child. Now, we all know that finding the time to go get our nails done, hair did, shopping, date night, etc. are probably very limited but making small goals for yourself or utilizing the resources you have to go do those things will be beneficial. Please familiarize yourself with symptoms of depression, anxiety, and caregiver burn out so you can seek help when needed. Do not forget your child is still your child and you are still you and a mother.
5. Adjust to your new normal
A lot of things are going to change. Your child’s schedule may be more hectic, they may need surgeries or be put on medications, etc. However, you have to remember to continue to live. I wish someone would have told me earlier on to continue to live. When Easton first had his surgery for his g-tube, I had no idea how much it would take to go out in public for the first time, and I’ll be honest, we avoided it for a long time. We noticed he got more stares or rude looks. It was a process to get his feed set up and he could only be fed at certain times which changes your mealtimes. Now, we go out with hardly the slightest thought. Continue to make special memories with your child. We have a bucket list for our son called, Adventures with Easton, I will share with you all at another time. Know that you might lose family or friends in this process but the true ones will reach out and be there as you navigate this new journey.
