Once again I find myself behind the keyboard over a year after I last wrote. I always have lots to say so that is not the issue but I just don’t seem to take the time to write it down. Maybe it’s just the stage of life I am in. Four kids, five years apart, all involved in different things at different places at different times. Nothing new to those of you that are also taxing your teens and pre-teens around. Regardless, I must do it more.
I have found that in these past two months I have come to a couple of realizations. We all face challenges. We all face struggle. It might not be the same kind or at the same time but sooner or later we will all walk through it. This past Christmas season I found myself bouncing around in my emotions and body like a pin ball. Journey had another un-expected shunt malfunction which as per usual resulted in surgery. Every time this happens we hope it will not happen again. She had already had one in march and knee surgery in June so one more just before Christmas was a huge bummer to say the least. She is almost 16. In those 16 years has had a total of 18 surgeries ( of various kinds) She goes in, she comes out into the recovery room entertaining and joking with the nurses high on morphine and telling tales the size of Everest. And each time the nurses say ” we love Journey. As much as we never want to see her again we love having her here! She makes our day.” Then we stay a few nights and we go home to “recover”.
There is always aftermath. For her, for me, for the rest of my little family. People say “you must be used to this by now” I will never get used to watching her fall asleep on the operating table. Or kissing her forehead before she closes her eyes. Maybe it’s that I don’t want to be used to it. Insert realization number two. Having a medically fragile child can be a very lonely place. I am caught between longing to have someone understand to being thankful I don’t have anyone that can understand because that would mean their child was sick, struggling…having to be poked time after time with needles, or having to juggle the emotions that each physical and emotional scar leaves.
Unfortunately two days after Journey was released from hospital she started experiencing pain in her abdomen without going into details we found ourselves back in hospital the day after boxing day. I was sad, and I was angry that this is what our Christmas holiday was. I was sad and angry that finally Journey got her knee fixed in June and she was so excited about getting on the mountain during Christmas break. One disappointment after another for her and for me as her mom. When will she get a break?
This time was different. She didn’t want people to know, she didn’t want to communicate with friends. We were hoping to avoid another surgery but sure enough one day later we were being wheeled back into the operating room. Even one of the nurses who recognized me from a couple of weeks before teared up. ” I hate that I recognize you now” she said. Me too. I knew that this surgery was going to lead to at least one more within the week and as I kissed her forehead and walked out of that room the tears flowed. I am usually pretty good at holding my crap together but not this time. They came and came and came and they didn’t stop. Even when I felt ready for them to stop they didn’t. I hate this for her.
She came out and we knew that the next few days would be uncomfortable and different. I didn’t know how to walk her through this one. I didn’t know how to fix it. I didn’t have words. We joked inappropriately of course as we always do but this time she slept, she stared at the wall. How much more can one kid take? I don’t want to hear one more time that this is what makes her “stronger” or that she is amazing because she can “handle” it. Then my mind would go to my other kids. The ones that were left waiting for answers, for phone calls saying she was ok. What was this doing to them?
If you know us… you know we have never let the disability and medical stuff define us. We don’t worry about the next surgery in fact sometimes can be a little delusional as friends could attest when Journey is in malfunction. We moved away from the hospital, we want to live and for the most part we do…. we live really well. But then the reminder creeps in that there is a piece of plastic that Journey needs in her body to live and right now her body does not want it in there and we start the healing process yet again.
We found out we needed to be in there past New Year’s so Ben and the other three came down from Whistler, we had party hats ( I think they were meant for dogs) strung white lights and ordered Thai food. She came out of her second surgery at 6 pm New Year’s Eve and ready to party:) At the end of the day all that mattered was that we, the Smiths, were together. Once again my emotions were all over. Grateful she was ok, mad that she had 5 surgeries in 2015, thankful for our healthcare system, sad that she now had more incisions and scars to deal with, sad that I didn’t get a real Christmas holiday with my husband and kids, thankful we had Christmas day together at home, grateful we have incredible friends. Like I said boing, boing , boing emotional roller coaster on steroids.
So why do I write this time? I write and I share because I know there are other moms, dads, siblings that are feeling and going through many of these same things. The whys, the wishes, the sadness and the joy. The hospital kitchen is a meeting place for us to share our story’s about what our kids are in there for while we make Mr. Noodles and look like we have been in the same clothes for 7 days. I find great solace in that place but then we leave. We return to life and people want us to go back to normal. We often don’t talk about it because I know for me I don’t want people to feel “sorry” for us and yet I know there are people going through the exact same thing somewhere. Like I said, different thing maybe but still going through it and sitting silent.
I want to go back to normal even though normal is overrated and unattainable. I want to wave a wand and take her scars away. I want to turn the clock back and re-do Christmas holidays but I can’t. And instead of acting like everything is ok I embrace the fact that some days it is not. That some days it’s ok to cry and be mad and wish that things were different. Wish for a moment that we didn’t know that life, in the hospital, and wish that my younger ones didn’t either. Yet in the same breath, my kids, their empathy, their concern for all around them, their deep joy in the midst of hardship, helps me know that regardless of these circumstances, they are living….. truly living in light, and joy and hope one day at a time. That we are a family that sticks together through it all even if it means we party in the hospital and make our nurse wear a dog party hat. Here’s to 2016. I know it will be incredible, messy, hard, chaotic and full of tons of inappropriate humor. Here’s to being vulnerable and sharing our mess and here’s to family.