It was nice.
I say that not to be cruel, but to be honest. Three months ago we were naively living as if we were just a ho-hum normal family with a regular ol' life. No big surprises, just usual concerns of trying to sell a house (still...), trying to figure out how to raise a three year old, how to get our four month old to gain weight, nothing major. The fact that our family and its dynamic is forever changed is still something that is sinking in for all of us I think.
In the last week we've had three appointment for Sam and after this last one, on Tuesday, I lost it. I was (am?) overwhelmed. I hadn't given a great deal of thought to Sam's condition in so long, and it was hard to hear two days in a row how he's behind...how we have to work with him to get him stronger and help him catch up. Please don't misunderstand, I am ecstatic to finally be starting physical therapy. To have multiple people evaluate him, help us know the right ways to work with him...it is fantastic! It is also very hard. I'm glad I have these therapists to hold up a mirror and say to me, your son isn't just the average kid. It's time to fully face this, embrace it, and move on.
So here I am. Facing the fact that my son has some work to do. He has some catching up to do physically. He has another surgery in a year or so. He'll have more work to do after that. He may even have more surgeries down the road. This is my alternate reality. My daughter has to adjust to Sam getting therapy 2x/week and getting this special attention and we, as parents, have to figure out how to balance that out for her. This is our family right now. Time for me to figure this out! More to come, I'm sure.
Denial is a good thing, actually. I recently had a therapist tell me you have to shut some things out of your mind - at least sometimes - in order to function. You obviously are doing what you need to for Sam, so you're not denying the reality of your situation. But you don't have to remind yourself about it a hundred times a day. Enjoy those days when there is nothing to remind you of what you've experienced, and will experience in future. Those are the days to gather your strength.
ReplyDeleteYou're also still very fresh in all this, emotionally as well. Sometimes the *real* crash comes months, even years after the acute phases. For me, it was relatively recently. My daughter's last surgery went with flying colors, and I was suddenly confronted with a whole new situation: no more surgeries hanging over our heads. At first I was elated. Then I crashed. I was so used to the phase I was in, the long waiting period, during which there are so many hopes and so much support needed for my daughter. I couldn't grasp that it was over, and something new had started. The crash came about 6 weeks after we got home from the hospital. I thought: How can I crash when everything is going so well? Answer: exhaustion, accumulated over years.
So enjoy your good days, and don't fear the difficult ones. It's all part of the journey.
-anika
Hugs to you. Take the good times when you can. It's OK to escape the drama now and then. You are doing an amazing job and I'm in awe of you. --Ann H.
ReplyDeleteHello Hello From Utah!!! Your Sister (in our Dr. Office) occasionally sees my son. He is a complex heart as well... Hypoplastic Left Heart Syndrom,is his major defect. We are coming up on his Fontan. I remember all those times we had Physical therapy, occupational therapy, Dr. visits, plus our daughter was the same age as yours when our son was born. BUSY! You are a fantastic mom for helping him. The payoff for us is that now, he is beyond average. He is so much more than we ever expected or hoped for.
ReplyDeleteBest wishes in your heart journey!
Brynn
Momma to Ryleigh(6), Alex(4)we call him Gator, Eden(8 months) My girls are heart healthy!