This week has been one of the hardest I have had emotionally in months. It is hard to say for sure what makes some days more unbearable than others. But the reality is that there are hard days and then there are days that are even harder. There are days you pat yourself on the back for getting through and then there are days you can barely muster up the energy to keep going. You think that if you have to live in this one more day you will never make it. But you do. What’s more is you learn from it, so the next time you think you cannot make it you remember it is not true. It is just what the enemy wants us to believe. But God has given us access to everything we need to make it. We are all capable of so much more than we give ourselves credit for, really.
Izzy has only been out of bed a handful of times in the past five weeks. The muscles in her legs are weak and out of commission to say the least. Physical Therapy has given her some support braces to wear in bed but she is refusing. On Friday we started getting her out of bed with a walker. It is hard, but I am hopeful that by the end of the week she will be more into it. The kidney doctors have started weaning Izzy off blood pressure medicine and she is responding wonderfully. This is a good sign that we caught the TMA in time before it could do permanent kidney damage. Different kidney markers they look for in the blood also continue to come down which is encouraging.
Overall she is responding as well as she could be to the treatment for TMA, which is great. But I cannot stop thinking about how we should be starting radiation next Monday and now we are not. Now we are a month or two out. And more than likely we will remain inpatient the entire time. Even over March 11, Izzy’s fifth birthday. It stings just looking at it on the screen.
I took Carter to the Lego store in Chicago this weekend (quite the letdown might I add). He needed to get out of the house and I thought a new, cooler, Lego store might be nice, but he was more impressed by the hotel pool. He swam for hours while I pictured Izzy back in the hospital in her bathing suit. She had been wearing it all week playing ‘beach’ in her room, flip-flops and all. She will not be able to swim again until her central line is removed, which right now is looking like the end of the year. I sat on the edge of the indoor pool hidden behind my sunglasses, tears streaming down my face. He swam around alone watching siblings splash each other with laughter. Occasionally he would look at me and smile but I could see the pain in his eyes. I thought he would enjoy this, but it was harder on both of us than I imagined.
The trip to the mall the next day was even worse. I did not know the Lego store would be right next to part of The American Girl store. “You have got to be freaking kidding me?,” I said as we walked past it and the multitude of little girls that flooded the entrance. I tried, I really did. After we left the Lego store I went in and tried to pick out something for Iz. But they were everywhere. Happy little girls smiling from ear to ear, each and every one of them with hair. Carter looked up at me and said his stomach hurt. I grabbed his hand and led him out of the store. “I know, babe, mine hurts too.”
I am back in Cincinnati now, lying next to a little girl (in a bathing suit) that has been reaching over every now and then to hold my hand while I am typing. She has been falling asleep like that the past few weeks. What seems like forever ago now, I used to run my fingers through her hair at night. I remember the first time it came out in clumps in my hand. That was so much harder for me than her. Soon I started rubbing her back to get her to sleep, but too often she was sick to her stomach and did not want me touching her. Now all she wants is to hold my hand. A simple gesture used by even fifth grade “couples” and yet it communicates a love so deep.
None of us gets a say in all this. This life thing just begins to unfold before our very eyes and just like that we are in it. I opted out once, many years ago. Said I was done with all this ‘life’ stuff, but God would not let me go. He had a plan for my life, a calling. A calling to be the mother of a little girl named Israelle. To protect her, to fight for her, to be her voice loud and strong. And even just to hold her hand as she falls asleep.