To the Newly Diagnosed Family

I am often asked, “If there is one thing you could tell others in the beginning of this journey, what would it would be?” Depending on my day, this answer varies. There are few things I would like to share with that mom or dad whose child was just diagnosed (with anything really- it doesn’t need to be diagnosis specific).

1. YOU ARE NOT ALONE! Whether you are sitting in the NICU, another part of the hospital, sitting in an outpatient clinic, or in your own home when you get the news that your child is a medical condition you’re not alone. There are more people than I ever imagined in our communities that are going through the same things you are feeling. The sense of failure that you may have done something to cause this. The anger at the world for making your INNOCENT child have to go through this. The jealousy you feel when you see friends, family and even strangers out with their healthy child. The grief and loss that over powers you when you least expect it. These are feelings that ALL parents of children with special needs go experience. It doesn’t matter if you child has a mild or a severe condition, the emotions we go through as parents are very much the same. Until you realize this,it is very easy to feel completely isolated and like no one could possibly understand what you are feeling.
2. This is not a competition. There is a very odd phenomenon that I see from time to time. Parents of children with special needs will start to talk about some of their struggles and it starts out very supportive of one another. Then, somehow it shifts. One person’s child may be more medically involved than the other and they start to say things like “well at least your kid can walk/talk/smile” and in a sense they start to belittle the other parents struggles. All of our struggles are very real! It is all very subjective too. What may seem like a lot to one parent may seem like very little to another. That does not make either persons struggle any less real.
3. Do your research. When you talk to your doctor and get a new diagnosis, a new treatment, and new medication ask the doctor to write it down or spell it. Go home and Google it and learn EVERYTHING about it. However, DO NOT self diagnosis. Do not Google your symptoms. Googling aimlessly with symptoms will only get you into trouble. No matter what you start with you will find your way to some devastating diagnosis that may or may not have anything to do with you.



4. Ask for help. I waited 2 years to ask for nursing for my daughter that required around the clock care, and 4 years to get help over night. Once I got help and realized how sleep deprived and how stressed I was I kicked myself for not getting help sooner. Getting help does not make you a bad parent. If you don’t qualify for nurses, train a friend or family member to care for your child so you can take a break every now and then. Your health will be much better and you will be able to be a much better parent for it. Even if it’s only a few minutes here and there- get help and take time for yourself!
5. Use your resources. Social Media has EVERYTHING now. There is a group for just about every diagnosis, non-diagnosis specific groups, mom groups, dad groups, if you think you may benefit from it chances are it’s out there. However, not every resource will be a good fit. I have joined some diagnosis specific groups in the past that were toxic for me. I had to walk away and find another group. If you are not getting what you need from a group don’t feel bad for leaving it. There are so many out there, I am sure you can find one that fits your needs.
6. Celebrate EVERYTHING! I HATE milestones. My daughter is 9 and we still have not hit any of the infant milestones. The first few years every doctor’s appointment is a brutal reminder that your child is different. It can be so defeating. Throw the milestones out the window and set realistic goals for your child. Learn to celebrate everything! Maybe you won’t get a first word or first step, but you get to celebrate things others take for granted. You can celebrate your child tracking outside of their previous vision field. You can celebrate having less secretions in your canister at the end of the day than you did the day before. You can celebrate 3 days without a seizure. These are just as important- if not more so- than milestones.



7. Make it count. My last piece of advice is simple, live each day to the fullest. Every moment you get to make memories do it. Never pass up on snuggles, story times or Eskimo kisses. Our kids are amazing and I treasure every moment I get to spend with mine.

In closing, you CAN do this! It is hard and it does not get easier, but you do adjust and it becomes your “new normal”. Down the road you will look back and smile at how overwhelmed you are right now. You will meet so many amazing people in this journey. Slow down and let yourself enjoy the good stuff.