We're at Seattle Children's today for all day infusions for Mary. She doesn't feel so hot after her Methotrexate injection last night but the anti-emetics they have her on have helped a lot. I, too, am struggling today with nausea and various medical crud and still fighting the Mito crash from Christmas. The two of us are a slow, pitiful, but oh-so-cheerful pair today.
As the IVIG was being infused there was another teen close by really having a hard time. Cancer stinks and the nausea and vomiting that accompany chemo. are just a nagging nightmare. She was so sad, crying softly. Then I was in tears. That's unusual for me but we have another medical trip coming and everything in me is a bit out of emotional balance again. I know how that Mom is feeling I know how that teen is feeling, because I am both of them, and there is nothing I can do to make it easier for them. It's a road that must be travelled. Acceptance. This is such a huge part of a medical journey. It doesn't make the symptoms any easier but not fighting them or being angry certainly does.
I just walked to the cafeteria as Mary slept, to get a coffee and her a Diet Coke. It's funny how, when I am having a flare up, sometimes it makes things feel very clear. Clear? Yup. I was taking a stroll from hem/onc towards the elevators and saw several families waiting to be called back for their infusions. I could tell they are frequent flyers like us because they were happy, joking, visiting even though the patient looked terrible. I sometimes wonder how this looks to newly diagnosed families.
Then I came across the check-in desk on Whale 6 and there was the most beautiful little girl, maybe 2 yrs. old handing her Daddy a camera and grabbing Mickey Mouse's hand for a picture. Daddy complied and she smiled sweetly.....me too. A little further on my stroll, I see families checking in for badges. Some are totally exhausted, some looking confused and stressed, others happy.
One day Mary and I were in the elevator between appointments and infusions and there was a Mom and Dad in there too. Mary tried to say "Hello" and there was no response. They both looked shell shocked. She was rather put out and I had to remind her that we are veteran medical people and that very likely they were just given a very difficult diagnosis or worse. They had no idea we were even there. She understood. It's different for us, we get difficult diagnosis' fairly often and know the routine.
This medical journey is just not the same for any two families.
I love that Children's has Starbucks....of course it does....IT'S SEATTLE ! It's a treat and a comfort. The folks who work there recognize everyone. They recognize me and greet me. This alone is such a blessing. Do they know what a blessing that is? Do they know how I appreciate that? They are up-beat, they sing...rather, they belt things out all together...so funny. They smile and they laugh. I love this hospital. This is a good thing considering how much time I have spent here with my children.
I wonder if I will ever be done with all this. I don't resent it, I don't dread it, I am not angry about it all. What I am is tired. And with all of my own medical stuff increasing all the time, I am wearing down, especially during a flare up.
Back to things being clear. During a flare up I cannot pretend all of this doesn't exist. I can barely fake it at all, so during this time I remain fairly isolated from friends (except for the computer) by choice for many reasons. My huge family is always around so there's no lack of socializing here. When I am feeling like a sick person, which I hate, things are quite clear because life here on earth is not forever and therein lies clarity. This is good I tell myself. I have to have my eyes on the prize....always. Maybe this is why God allows what He does. Between flare ups, my diseases are still there of course, but I can mask them, hide them, keep them locked up in cages in as much as I can manage my time. But when there's a flare up, there is very little that can be hidden for long as I feel and look so ick. I then have the gift of time to think about things I don't have time to think about when I am busy running the universe :) Yes, I have issues. My friend Fr. Know-it-All reminds me of my pride issues constantly !
This clarity right now extends to the upcoming medical trip back to NYC for the, I believe, 16th trip and 22nd time in the O.R. One of our twins, the youngest in the family, will have another neurosurgery, he's had 2 brain surgeries and a spinal cord surgery already in his short life. His brothers also need the same surgery as this is congenital and must be fixed. The brainstem compression is causing heart rate, blood pressure, breathing, and a host of other vital problems. We have put this off for as long as we could but God let us know by circumstances, it's time to roll. The enormity of a medical trip like this is daunting....for a healthy person. I am a lemon car who's parts are failing faster than they can be replaced. We are however, used to these trips and have a routine of packing etc. that is second nature now. Clarity allows me to see and appreciate my husband who is great at all this. It allows me to once again realize how our older children buck up and take care of our home and all that entails for weeks, sometimes months at a time while we're gone. They are amazing and we are blessed.
On this trip Mary will go along for her own post-op but also to help me when Ed flies back home after the surgery and hospital stay. She's had so much medical in her life she can manage it in her brothers and myself easily. God never allows both of us to be medically down at the same time!! Woo hoo!
Hug your kids, your spouse, your friends today. Clarity is lovely. See them all for what they are to you and why. To see clearly, what is important and why. I am reading a book called "Proof of Heaven; A Neurosurgeon's Journey into the Afterlife" A good read. Life matters when the rubber really hits the road. Don't wait.
~Blessings~
Lisa
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