Do you ever feel that you are drowning in life? Sometimes I just feel so frustrated because there is so much more that needs to be done than I can possibly get to. Between all of Jared's needs and keeping up with Tyler and Alyssa I just can't keep afloat. Bed linens need to be changed, clothes folded, bathrooms cleaned, vacuuming done, floors mopped and that is just the inside. Now that it is warming up I have the outside to work on too. Then there is all of Jared's therapy. He still is not close to walking yet and this latest bout of sickness has seemed to really have set him back a month or two. I know that I should be spending more time working with him on so many things but how do I fit it all in? I need to read the scriptures, have some time to contemplate life, keep in touch with dear friends, write thank you notes and oh, some exercise would be fabulous. How do I fit it all in? The truth of the matter is that I can't, but how do I choose what is the most important? One of these days I might figure it out.
Jared is doing better. He has a touch of the cold that I had last week, but it doesn't seem to be to bad as of yet. We spent the ENTIRE day at the hospital yesterday. I left at 8 am and didn't get home until 5 pm. Jared had his normal labs and clinic, but he is also part of a study that is studying one of the immunosuppressants that he is on (cellcept). We just had one visit left to have the study done and so we were trying to get that in as well. We tried getting the study done last Monday but after spending 3 hours trying to get an IV in Jared's poor little body, we gave up and decided to try in another week. Yesterday went better but we still had to wait for the IV team for almost 3 hours and then it still took 2 tries to get the thing in. Jared's poor little veins have just been poked too many times. After we got the IV in we did the first two blood draws and then headed to transplant clinic. Jared was so tired by that point and fell asleep even before the doctor could examine him. After clinic we still had several blood draws so we still had more time to kill before we could go home. It was a long day and Jared and I were so glad to get home. I felt a little bad letting Jared get poked more times than necessary for this study. But I am so grateful for the care that he is receiving and the medicine that is available, that I want it to be available for more children. After seeing so many kids still on steroids at Camp Sunshine, I really felt like we needed to finish the study so that more programs will stop using the steroids that have so many bad side affects. It was a long day, but hopefully worth it. Jared's labs still show EBV and BK so we are still on pins and needles hoping that his little body can keep them under control. We'll just watch and see.
10 years ago
2 comments:
I found your blog through Kaidence's and it sounds to me like you are doing exactly what needs to be done right now and you have already set your priorities straight. The dishes will always be there, the floor will always need to be mopped, but your kids will only be this age once and from what I read you seem to be an incredible mom. Although I am not in the same situation as yours I also have children with special needs, work 2 jobs and wonder the same things you do..did I do enough today? But when it comes down to it we do what is important and the rest will eventually fall into place.
I know EXACTLY how you feel. I can tell you it does slow down a little bit and Kayden doesn't require as much hands on as he use to. Sorry about the EBV and BK viruses that sucks. We have clinic in a couple of weeks and we need to get one additional lab because of the mastoiditis that Kayden had, but overall we are on level ground. I am sure that you will get there someday.
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