It’s been more than two weeks now since we received a call from our child’s out-of-state doctor, an immunologist whom specializes in medically complex cases. Two weeks since we’ve heard the news “Yes, the test results indicate that your son has an autoimmune disorder called PANDAS.” Two weeks since we’ve once again changed medication and added new ones… two weeks, but almost seven full months of fighting a battle with our child that no one could have prepared us for!
“Good Grief!”, I think to myself, “Where did more than half our year go?” “Where has all that time gone?” On the inside, it feels like we’ve missed out on several years because the everyday battles seemed to send us into survival mode and we’ve just completely lost track with the rest of the world; many days not even caring what was actually going on that we were missing. I hate to be that frank but it’s the honest truth and when you’ve come from our past to where we are now… well it’s a bit daunting. Okay, it’s a lot daunting and to make matters worse, we’ve also received test results in the mail this week from neurological testing that was done over five months ago. Again, I think to myself “Good grief, when will our child ever catch a break?” This news has left us sorting through four different neurological disorders and one rare autoimmune disorder that roughly only about a hundred or so doctors in the U.S. are trained to treat.
When our child was three years old we learned of his very first diagnosis which was Autism and I remember feeling both tremendous relief and grief simultaneously; grief because my worry and fears about how his Autism could affect his life negatively, and relief because we then had a name and knew what path to take for the best possible help in the areas he needed regarding therapies. Autism, though it was new words to utter and it worried me immensely, was well known at that time and treatment was readily available at our fingertips. As for these new diagnoses we’re sorting through, I only know one name for them :GRIEF!
To quote Webster’s:
Grief ~ emotional suffering one feels when something or someone the individual loves is taken away.
Yes, grief is sometimes necessary when tackling a difficult diagnosis, let alone five of them. Grief soon welled up inside me as I read through the neurological reports just like it did when speaking to the doctor on the phone about the most recent lab results. I have grieved over many things regarding our child. When you hear the words “We don’t know if neurologically we will get him back fully,” from two or three specialist whose supposed to “cure” your child, well grief sets in. It’s not meant to and you try to fight the feeling back, after all you think “I still have my child here with me!” but the grief is there.
You think about all the therapy that he’s gone through, and “for what” you think.
You think of how far he’s come in those years of therapy, years you have spent watching him slowly build himself upward, defying odds stacked ten foot tall against him! “Where is it now?”
You think about how you are starting over, depending on how he responds to medication and again with therapies. Yet how do you begin to correctly cover the right therapies when some of these diagnoses seem to overlap, and some it the specialist aren’t even sure how to treat them?
You think about how your child was once only neurologically affected with Autism but now you know it’s not just one neurologic issue but several instead. To add to that chaos, he is now battling an autoimmune disorder and you will have that to contend with as well…. because it affects every last one of the other disorders! It alone complicates everything.
Then, you look at his picture like the one above… and you calm yourself, and you start to look through internet sites for things you’re going to need help with and you make a NEW list of contacts that’s local or within reach of where you live. You talk with your child’s school and teachers and administrators and all of his team of doctors so much that you feel like you’re at your child’s school or doctor’s offices more than you’re at your own home, because you are. You are collecting information, reports, test results, you are building your child’s new portfolio; a portfolio with many new sections now. You contact friends who know ‘people’ and friends that can call in a favor or two for you because they know of someone who can help too. And then, you begin to move past that grief. That grief that’s haunted you for weeks and months has started to fade. You are a parent, it’s what you do! You are just like any other parent out there trying to provide the best care for their child. Your child has lots of needs, yes, but you begin to work your magical will for his needs to be met!
You see grief takes many forms and I’ve found that grief can be an important aspect of helping you to ‘move on’ and lace up your shoes again, and hit the pavement to find what it is that’s missing from your child’s needs!
There is grief and then there’s “good grief” ….it allows you to find strength again. It helps you to stack those steps back up under your feet that just knocked you to the ground when all those new scary fears came pounding through your door and into your once safe home!
Lastly, I find that a dose of “good grief” will eventually make way to what always preserves as the key ingredient in moving past difficult times and that one thing is HOPE. If you can find hope in a difficult situation, you can turn it around, you can move past it! Hope will not allow you to stay stagnant, if you can find hope you can find a way! It may not be the way you pictured but hope will not leave you stranded and if you recognize it, it can be your lifeline!
“Don’t let your hope float away from you, when it’s there you will know it and grief will be in your review mirror!” I tell myself that a lot these days and now I share it with you… do you see it, there in the distance? it is your life preserver …go grab your hope too!