The Beginning

It is hard to believe that we are already in the last quarter of 2012. In our part of the U.S., the weather has turned much colder, it’s wet, and we are chilled to the bones, bracing ourselves for a long, hard winter! The close of 2012 will mark the end of a bittersweet year for me. It has been so full of ups and downs in this one short period of time that I sometimes have to take a step back and collect myself! The year was filled with what seemed, at times, to be endless hours in doctor’s offices and in physical therapy sessions, most of which required extended time away from home and the rest of the family. As a family, we were able to gather with many other families to learn and celebrate our children’s unique circumstances at SRNA Family camp. Most notably for me, as a mom of a young child with ADEM/TM, I connected for the first time with another mom of a child with Transverse Myelitis.

Big deal, right? Huge deal! This December will be the five-year anniversary of when my son was diagnosed with ADEM/TM. Five years of trying to understand what happened, and continues to happen, to my child has taken its toll. I was trying to work full-time, manage a family of five, “research” on my own all of these different things that doctors and therapists were throwing at me as treatment options, worrying about my son and how he was getting around school safely, wondering what the headaches and other aches and pains he complained about where they were coming from, what we were going to do when he changed schools, trying to afford a new pair of shoes every six weeks to fit bracing…it was exhausting and lonely. Don’t get me wrong – I have tremendous friends and family that are a huge support, but I still felt stranded on this island of a rare diagnosis that nobody, not even the physicians in our area, understood how to treat my son. I was so tired of feeling like I had to explain why my son wasn’t “potty-trained” by now and can’t be, why he is considered paraplegic but yet he was never involved in an accident; telling people, “no, he doesn’t have cerebral palsy”, and preparing for the look of shock on their faces and prepping for a potential argument when I would tell them what caused his illness, resulting in his paralysis/diagnosis. I talked to Liz, another mom with a child who suffers from TM, and throughout our conversation, I felt a weight being lifted. After our conversation was done, I sobbed. I was so happy that there was another person that I could relate to, that my son could relate to, and heartbroken at the same time that another family and child had to experience the ramifications of a TM diagnosis, as well. She understood and experienced the same frustrations and daily struggles, but still had that hope and determination that I did for my son. We were able to meet in person this past spring and our boys became fast friends. I will never forget my son’s excitement and his huge smile when he said, “Mom! He walks just like me!!” We were no longer fighting through this “alone”.

Through my friendship with Liz, I’ve become more aware of SRNA and was reminded of the Family Camp. We were able to attend this year and it was an incredible experience my family still talks about on a weekly basis. At camp, I was able to meet other tremendous moms, who I am blessed to be able to call friends, and who have a passion to learn, create awareness, and ultimately see to it that all kids with a TM/ADEM/NMO/ON diagnosis grow up to be happy, healthy, adults. It goes without saying that there are challenges in child-rearing, but a rare diagnosis complicates challenges even further and throws in its own unique hurdles to overcome. As moms, we are typically by nature, fierce and relentless when it comes to our children and meet the challenges head on, but add in the extra complications of a rare diagnosis, and raising a child can be all the more daunting. I truly believe that collectively we can be an even bigger force to reckon with when the challenges of TM come upon our families. By sharing what we’ve learned and supporting each other through the difficult times and celebrating the good times, we can make sure that no child, no mom, no family who has suddenly found themselves with a diagnosis that they’ve never heard of, feel like they are stranded on an island alone!

So, how do we combine our efforts and reach out to those that need another mom to talk to, bounce ideas off of, find a reference for a physician, or ask the questions about where to find supplies, what to do when your child is struggling or when we, ourselves, are struggling?

First, become involved in SRNA Kids. We are working towards some tremendous efforts to raise awareness and funds for families to attend camp and other educational opportunities, for physicians to be specifically trained in pediatric demyelinating disorders, and eventually to help support families financially when the burden of extra equipment and medical expenses become more than they can bear on their own. We are in our infancy but already beginning to see our efforts come to fruition and are so hopeful of what else we can do for our kids. You’ll also be able to network with a great group of moms, who share and understand your passion when it comes to our children’s diagnoses.

Secondly, let’s meet here on the blog on a monthly basis. Let’s create a conversation where we can share our difficulties and our celebratory times, ask the questions we can’t ask our other “mom friends” – let’s learn from each other, educate ourselves, and be a support for one another. Our hope is to create a monthly blog series, dedicated to the moms (and dads and primary caregivers, you’re not excluded from this!) perspective. We’ll hear from moms that have been dealing with TM and its nuances for 10, 15, and maybe even only 1 year. I’ve recently seen a photo of a teenager with TM, ready to head to a typical teen school event – what struck me about this photo was the smile in the eyes of this child – I have no doubt the mom had a lot to do with that smile! I want to know how she’s made it through, how she managed to keep her child’s eyes so bright even if her own held tears, anger, or frustration.

What about you? What do you want to hear from other TM moms about or what do you want to talk about as it relates to caring for your child with this diagnosis? The possibilities are endless:

Restorative therapies; what is it? Where do we get it? Why does it work?
What cathing or toileting supplies do you use? What works for your child? Where do you find them?
How do you handle the physician that thinks they know your child better than you?
What all can Botox do? Is it okay?
How do you respond to the stranger who asks very personal details or asks “what’s wrong with him/her”?
What did your child say or do that made you realize you really are doing the right thing for him/her?
Navigating school; the IEP or 504 plan; communicating with other students and teachers about your child’s specific capabilities and needs.
What’s the difference between spasticity and tone? Why when it got cold did my child suddenly become so stiff?
How many options are there really when it comes to bracing?
Where on earth do you find shoes that will fit bracing or won’t wear holes within two weeks?
Your child took their first steps after you were told they never would – we want to know and celebrate!
How do I keep positive when all I want to do is melt into a puddle? After all, my child is watching…
What options should I consider on my child’s wheelchair?
How do I get my child to another part of the country to see a specialist?
Who and where are the “specialists”?
Adaptive sports – how do I get my child involved?

…and the list goes on…

The comments section is available and we’d love to hear what you want to see in this space. If you have your experience or story or question you want to share, let us know at [email protected]! Even if you think it is the same as everyone else’s – I can guarantee you it isn’t and if you have the potential to touch or teach just one other mom or child…it could be the one that makes all the difference!

~ Rebecca Whitney, mom of 3, youngest diagnosed with ADEM/TM at 4 months of age