Fragile – A Family Update

I have been promising to do an update for a few days but first needed to contact our family to let them know what is happening. This business has opened up our personal lives to about 2700+ people who follow me through Facebook and Instagram…some know what is going on and others have been sending sweet messages asking if everything is okay. We might need some scotch tape to help keep the pieces together but we are okay.

When Josh and I planned out life as crazy newly married 20 year olds, we never expected the curveballs life would throw at us. We have been incredibly blessed, we were able to buy our ‘dream’ home. We both have careers that we enjoy. We have extended family close by who help and support us. We have these amazing kids who make everyday interesting. Our life is full with work, kids, volunteering and never ending laundry!

I have written before about how Peter’s late diagnosis of autism taught us a new world of parenting, The daily struggles, the scholastic struggles, the challenges that seem to evolve and change as he gets older. Cecilia’s diagnosis of autism broke our hearts again. She was faced with different issues compared to Peter and we had to relearn new skills and tactics. She has been in the early intervention program called Stepping Stones and goes to daily therapy, year round and the results have been nothing short of amazing. She has come so far in her two years with the program and now we are pushing the government to continue her care and not cut her off when she ‘ages out’ of the program.

We push and push for our special needs children to receive the best care, to make sure they don’t slip between the cracks. It feels every month there are group meetings and case meetings, and talking with staff, going to multiple doctor appointments, we argue daily about medication and basic hygiene. Every single day is a fight. A fight to get them to transition from one activity to another, a fight when we need to run into a store. Every day we push. We push for care, for safety, for cleanliness, we push anxiety filled children out the door into the world. We are pushing our square pegs through the round world.

We are really tired but we do not stop.

Our youngest Rosalie has been showing some delays, and we have recognized a few quirks. It takes months of waiting and doctor appointments and referrals to get an answer but Wednesday arrived at last. I was expecting a diagnosis for Rosalie, it wasn’t me being an over protective parent or seeing something that wasn’t there. I knew in my own education through experience and gut feeling that she was either delayed, needed some speech therapy or on the spectrum. There was still hope that my blue eyed darling was just allowing us to do the talking for her because being the youngest of five means your voice needs to be pretty loud to be heard somedays. I knew that we would be told that she fit the bill for one of those.

In truth I held on to that hope tightly despite common sense telling me to brace myself.

We arrived at the hospital for her final assessment with a team of some of specialists who would find the answers to our dreaded questions. Rosalie, being my little darling, charmed them with her sweetness, played with their toys and games. Having been through the same assessment only 2 years prior, I was quite familiar with the pattern of the day and found this round less stressful. Rosalie was in a great mood, was happy to be there, she found the day quite fun and when the day was over and we sat down to go over their findings and results, I was still clinging to some hope.

The odds were not in our favour and it feels like a sick twist in fate. Rosalie is also autistic, her speech was almost untestable due to the almost complete lack of useful speech but the most concerning to them and shocking to myself was her comprehension level. She is well below her age and there is question if there is no speech due to a lack of comprehension, or is it autism causing the lack of speech? She has some big sensory issues that she seeks for comfort and that was not a surprise. They cried with me because it wasn’t news anyone wanted to hear or deliver. It isn’t the end of the world but it is the end of the hope I had for her world. Her path is to be steeper, with twists and turns.

We live in a world where being smart is prized and valued. It is how we get ahead, we praise our ‘bright’ children. For a child to be in enrichment is something of pride. Using their brains and heads… now I am trying to wrap my head around this word of comprehension. What is means and when there is a severe lack. I know it is early and there is time but I am her mother and it is my job to worry. My job to make sure that she gets the help she needs, my job to navigate this world for her if she cannot.

It is still early, there is paperwork to fill out, meetings to attend and more assessments to be completed before her therapy can begin. It is still sinking in, our emotions regarding the news are still fragile. I am thankful my children are healthy and I am sad knowing the struggles they will face. My emotions are swinging wildly from high to low and I am coping the best way I know how but throwing myself into my children, into the upcoming holiday, into feeble attempts of redecorating and into my work. We are trying not to dwell in what could have been and focus on moving forward.