Hope vs. Reality

I haven’t written much in the last little while…my thoughts have been swirling everywhere.

Stalen’s 5 day hospital stay before Christmas had left me feeling mentally weak and depleted. His first experience with an ng tube was traumatic at best. We relived the nightmare over and over as the tube had to be reinserted 4 different times due to vomiting. The brief routine clean out that was supposed to take 24 hours turned into 5 miserable, hellish days. Sadly, after 5 days he still wasn’t completely cleaned out. I slept in the hospital bed with him and never left his side because that’s what needed to be done. Despite it all, he still smiled!

He finally was released from the hospital on Dec. 16 and then it was full steam ahead right into Christmas all the while still dealing with his bowel problems.

This was one of the first years that I was relieved that Christmas was over. I was very much a Grinch and begged my husband to take the tree down Christmas Day. I just needed things to return to our normal.

While others may have been ringing in 2020 with champagne, we kicked it off with a concoction of peg powder, laxatives and suppositories as we wait to go to IWK children’s hospital for further investigations and hopefully answers.

Here I am in January…fully submerged and ready to come up for air. We have started the school transition planning process as Stalen is registered for kindergarten in the Fall. The safety list and challenges have been updated. The meetings have been booked and set. Decisions have been made around transportation and lists upon lists have been made with questions, concerns, and priorities.

All the while, in the back of my mind I am fully cognizant of the fact that in about 2 months my sweet boy will be turning 5. It’s bittersweet! We will celebrate the AMAZING and LOVED little man he is yet I am cognizant of where he is developmentally at age 5. I was 1000% sure that he would have lots of words by now, be feeding himself and be potty trained. The age of 5 is a critical benchmark one. It’s the one where so called experts say if they have not developed certain skills than the probability of it happening gets smaller and smaller.

I find myself teetering-swaying back and forth between hope and reality. Each is pulling me towards them but I can’t decide which direction to go in. I need to have them both in harmony but lately Autism is not allowing that. It’s so hard to balance the hopes I have for my son in conjunction with the reality of our situation.

I will never let Autism steal my hope. It’s the driving force that fuels my fight, my advocacy and gets my through those hard days.

This is a temporary rough spot not a permanent destination. I will choose to be aware of our reality but I also choose to believe that things are possible, even when I don’t know how they will happen.

Will my son ever talk? you betcha!!!!!!!!!!

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