Many of you commented positively on Jacob’s new picture on Caringbridge, and how great he looks in the picture. I have to agree, even if I am probably bias as his mom. At the same time as I look at the picture, which was taken in July of last year for the Bal Swan ball invitation, I realize how much Jacob has changed since then.
Being in the hospital for the last week, I do get reminded by doctors that “Jacob is another kid today than a year ago, six months ago, even three months ago”. Even if I know that, and it stinks, it’s hard to hear that comment coming up here and there – often when you least expect it. It always feels like you want to defend Jacob, but at the same time, what are you going to say? We can also see it. It just hurts a lot. The words sort of stick to you, and it gives you a bad taste. You always hear that hope is the last thing that gives, but I think for many doctors, they are so trained to look at patients clinically, and that’s what they do. That’s what they are supposed to do. And I guess that’s the difference of being the parent. You’re still hoping for a little change, a little improvement, a little fix. Not willing to give up or give in, even if you know that the fight between your care and mitochondrial disorder is not an even competition. Today, I do feel that my heart and my head are simply not in synch.
We’re pretty involved with pulmonology this time. It’s great that they are taking Jacob on, and I think it definitely has helped him coming off the BiPap during the day. Now we only use it during naps and night time. It is a long time ago that we started working with a new division of doctors, and it shows how comfortable we have become working with doctors who truly know Jacob. As we have worked with this new group of docs, we have had to fill them in much more on Jacob’s medical history. It does hurt to think and talk about that Jacob was in his walker cruising around in the kitchen or that he rolled around on the floor to anything he wanted to play with or that he would do “high five” with his hand or grasp on to objects and play with them. Don’t take me wrong. I am so happy for all the things that Jacob has experienced and got to do. And they were all big successes in Jacob’s world, and for Jacob himself. The pride was always surrounding him. But the knowledge that Jacob has a progressive disease still doesn’t take away the pain from lost skills. The pain you can feel deep in your heart, not necessarily with your head.
We also had a bit of a disappointment this afternoon. We were all packed up, and ready to go home, and then Jacob spiked yet another fever…It was decided to keep him overnight to make sure Jacob has not developed something new, and to make sure we don’t go home, and return to the ER tonight. It does make sense, but it still is disappointing. It’s that head and heart again.
Happy Monday! – Maria.
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