An Open Letter to the Parents of a Child Recently Diagnosed with a Rare Disease

Dear Parent,

I do not know you, and I can’t even really say that I know how you feel, but I know how I felt last May when we received our daughters diagnosis. I thought why us? Why me? Why her? I wanted to cry and crawl into a tunnel and disappear in my despair. In reality I cried on and off for several days, ignored a lot of phone calls, made a few others, and watched my babies every single move.

Was that the healthiest way to cope? Probably not, but it got me through. And as time went by I learned to pick myself up and as time went on the reality of dealing with the disease eventually became second nature. Do I still hate Dravet? Hell yes. But I have learned some important realities of dealing with a child who has a rare disease, realities that I learned on my own but I want to pass on to you.

Knowledge is power.

Recently it was announced that a new study would take place across 44 hospitals in the US in regards to which of three anti-seizure medications would work best to treat a status seizure. The point of the study to is create a national protocol for emergency room doctors to follow in regards to treating these kinds of seizures. Sounds decent enough, right? The problem was that this is a completely blind study and federal regulations allow it to be done without patient or parent approval, meaning the doctors do not have to tell you they are doing the study on your child before they do it. If that isn’t scary enough one of the three anti-epileptic drugs in the trial (fosphenytoin) is a complete no-go for kids with Dravet Syndrome, instead of stopping a status seizure in a child with Dravet it will actually make it worse. Thankfully they have come out with a list of hospitals that are participating in the study and IF you know about the study beforehand you can get an bracelet for your child to wear letting the doctors and emergency room staff know that you have declined the study.

I am so grateful to know that this option is available for us, but what if I didn’t?

You might be a parent like me, who already googled and searched through the information about my child’s diagnosis before the test results came back. You have an idea what your child will face in the days, weeks, and years to come and you continue to frantically search more information each day.  Or you might be the complete opposite, you chose not to look up the disease before you knew the results, you didn’t want to scare yourself with ‘what ifs’. Both options are totally okay, but remember that you can never know too much about your child’s condition.  In fact, the thing with rare diseases is that you will probably end up knowing more about your child’s condition than many of the professionals that you will come in contact with. You will be the one that is up to date on new trials and therapies that could benefit your child, and you will be the one that is often informed of studies like the one above in which you are the only one who can keep your child’s best interest in mind. At this point being educated about your child’s disease is not an option, it is a must.

Be your child’s advocate. 

Chances are that your child will see quite a few people throughout their medical journey.  Doctors, therapists, specialists, etc. And it is not always easy for them to connect to you and your child because, well lets face it, they see a lot of kids every day. Some, like my daughters neurologist, will focus on kids solely with your child’s condition. But more often than not they might see thirty different kids, with thirty different issues coming in and out of their office each day. They don’t always know all the nitty gritty details, and it’s not that they don’t care, it’s that it is impossible for them to do so.

But those details could make or break your child, and it is up to you to advocate. If your child is put on a new med that your doctor seems very excited about, but you see it having adverse reactions at home it is your job to be your child’s voice and talk to the doctor about a change. If you think your child would benefit from a certain type of therapy, or you a new piece of medical equipment at home speak up! You don’t have to be rude, but you also cannot expect for the doctors to know what is going on unless you let them know.

Use the power of social media to your advantage.

Social media is a great way to get your child’s story out there for others to pray and think encouraging thoughts, we set up the Hope for Austen page back before we ever moved from Texas because we had so many friends and family members wanting to be kept up to date.

But what I love even more about social media is my ability to connect with other moms going through the same thing. Facebook is filled with pages and groups directed towards parents of children fighting similar conditions. If your child’s condition has a name, I would be willing to be that there is a group out there for it. These are awesome because these are the people who know exactly what you are going through, they can help you through the ups and downs of day to day living. From my experience it is these people who will be your biggest supporters, and will pray the hardest for you on your bad days.  Which brings me to my last point…

You matter too.

This is probably the hardest point to remember of my topics today, but I speculate that it is the most important. I read a blog post earlier today that spoke about how for parents of special needs kids often do not just have PTSD, it’s more like TSD because the trauma is continual, it never goes away.

I remember the first time Austen was in the hospital, she was intubated and in the picu at Dallas Children’s.  On day two or three of her stay they were taking her back to get an MRI as well as CT scan to let us know what, if any, damage had occurred from her big 35 minute seizure. So far her dad and I had only left the room to eat or take a quick shower, but never left the hospital itself. In fact, when we did leave the room it was for as short amount of time as we could stand because we did not want to leave her alone. On this day the nurse came in and told us that they would have Austen out of the room for several hours. We could stay in the room she said, but she really encouraged us to leave.  To get out and go to lunch, to take a walk, to breath. We went to Denny’s and then to Target to get Austen a toy. In the Target checkout line I broke down bawling and the poor cashier had no idea what to do with me.  It was then that all the trauma, all the stress came crashing down on me.

You matter too.  You matter too. One more time for the people in the back YOU MATTER TOO. As a parent in general it is very easy to wrap ourselves into our kids lives until we eventually lose who we are without them, this happens sevenfold when our children have special needs. But you must take care of yourself, if for no other reason than if you lose your sanity who else does your child have?

So talk to a therapist, join a support group, take that respite care that the hospital is offering you. Get a pedicure, take a nap, heck even go grocery shopping by yourself. Do whatever it takes to keep you as 100% as possible, because you absolutely cannot make it unless you take care of you too.

 

Dear parent, I know right now you are scared, and I do not know if that will ever go away. I know that the road ahead of you is probably a hard one, and definitely a tiring one. But I also know you are not alone, you have joined a club that no one ever wants to join, but whose members are some of the greatest and most inspiring people in this world. I want you to know you are in my prayers now, and will continue to be in them until I draw my last breath. You are not alone, nor will you ever be.

With Love-

Meagan

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