PERFECT STORM

I see them, standing outside the school in a circle at pickup time, sunglasses perched and covering their dark under-eye circles. I can hear the familiar conversation as I approach the sidewalk.

I can hear how tired these moms are. Between teething problems, school activities, playdates, work & household duties. They are exhausted!

I listen to these conversations, seemingly on repeat, every weekday and am grateful I can’t relate to the insane busyness of their lives. Don’t get me wrong, I do have my fair share of parenting woes. I’m a mom of two kids, ages 6 & 9. I feel like we are a traveling circus anywhere we go. Someone is always crying, hungry, or on the verge of a tantrum. And me, I often look like I just rolled out of bed. My car hasn’t been vacuumed or washed in at least three months.

But I am different from a lot of the other moms in this way: although I sometimes miss my 8-5 job in the middle of my chaos or to be tired of normal daily activities. But I’m not so lucky.

I was given the Warrior Mom card, so I don’t fill my hours with activities and commitments of my own; everything has to be planned around my children. With medical bills piling up & doctor visits & therapy while running my own little business from home, I got skilled in multi-tasking my own little perfect circus of life. Nobody understands how complex and intertwined diabetes & Asperger’s is in every aspect of our lives. I wish I could describe it, but there are no words that can even give anyone an idea of what it is like.

It’s certainly made me the strong mother that I am today. But it’s also made me unlike other mothers as well.

I wish I had those first netball matches, unplanned fun holiday trips, sleepover planning or little cuddles. But with Asperger’s in the mix none of those are possible. My 9-year-old daughter has Aspergers, PDA & Type 1 diabetes. Those 3 combined is like the perfect storm waiting to hit. When a Hypo is near mixed with meltdown there no way to get anything in to lift levels. Deep breaths and pray the storm will pass. High levels turn into a sinking ship, everyone has to evacuate the ship, until the ship is patched. Somedays its clear open water with love, hugs, and adventures. You are always aware of the storm on the horizon, you know it's there but has to know idea when it will hit.

Then Celiac slipped in the back door too, a serious autoimmune disease that occurs in genetically predisposed people where the ingestion of gluten leads to damage in the small intestine. It is estimated to affect 1 in 100 people worldwide. I have witnessed what impact this disease can have on a little 6-year-old body & devastates me. With more tests, hospital sessions & gastroenterology that taking place in a couple of weeks, I often wonder why this path was chosen for me. People with celiac disease have a 2x greater risk of developing coronary artery disease, and a 4x greater risk of developing small bowel cancers, this is no fear that any parent should face. I quickly had to accept the fact that we no ordinary family and that only a few people with understanding the mix emotions that contribute to this perfect storm. Off we went to the Cape to undergo gastroscopy to confirm the Celiac diagnoses. Extremely exhausted episode but after about 5 weeks we got the results 50/50 - until today we really don't know if he has Celiac or not, although I manage pretty constant meal plans.

Often I get told that God only gives special children to special parents! This so not true! I came to the acceptance that He prepared me in a way through my rocky past for the dirt road we walk today. God gives special needs children to REGULAR everyday parents, who choose to step up and be strong for their child. That special child teaches you the life lessons that you never could have anticipated, and throughout your journey together, you learn how to become the parent that your child needs, even if it seems to drive you to breaking point.

Embrace the perfect storm each day, appreciate the small little progress and don’t let Autism, Aspergers, PDA, Type 1 Diabetes nor Celiac label your family or your child. The seed that you plant today will grow up to be a strong tree and withstand tall against life hardest battles.

Through every perfect storm, there are clear waters.

We will overcome it