I wrote the title of this post almost a year ago, and I had no idea how true it would prove to be. At the time I had just been told by the nurse in charge of discharging transplant patients that we would be sent home before Christmas. (I've said it before, but it bears repeating that in the BMT world, NOTHING is certain until it actually happens...) Nevertheless, around that time we were planning to go "home" to the apartment in Cincinnati after almost 6 weeks in the hospital. It was scary for me, as I knew that I would become Nathanael's primary caregiver and would have to give IV meds, milk and meds via the NG tube, and would have to carefully watch him for any signs of illness or infection. It felt like an impossible task, and I even created a spreadsheet for myself to use as a reminder of everything we had to do (and so we could write it down so we didn't forget that we had done it!). I was glad that my mom was going to be with me, but I still had no idea that I'd learn to do so many things, and would become so comfortable with them.
What I had no idea about at the time was that it in a year we might possibly feel like we had made almost no progress. Well...it's not really true that we've made no progress, but it often FEELS that way, since we still live in isolation, we still give oral meds 3x daily, and we still obsessively wipe and clean anything that Nathanael is going to touch. It breaks my heart to hear Jamison tell me that he's sanitizing his hands (3x in 10 min the other day) to keep Nathanael from getting sick, but that's such a big part of his world...and I'm not sure how it can be any different right now. Yes, the central lines are gone, and we've stopped some meds, but then we added some to our home routine that used to be done at the hospital. And it feels like we're always on the brink of another inpatient stay. Ugh!
Several months ago Brad asked me if he thought we'd all be in church together for Christmas. I think I laughed at him. That wasn't very nice of me, but it seemed so unrealistic, and I couldn't even dare to hope for that. Now I think I'd just like to get to church together NEXT Christmas. Yes, we were told 1-2 years for the rebuilding of a healthy immune system, but we're ready to be done with this ordeal NOW. Out of the frying pan into the fire, indeed.
I take so many things for granted like my kids' health. After reading your post, I will try to keep perspective and be extremely grateful for my boys' immune system. It's so easy to take things for granted. At church yesterday, we found out that a precious four year old boy was dignosed with stage 4 brain cancer. He doesn't have much time left. The mom of the boy is pregnant and due in March. We just never never know how many days we or our little ones have on this earth. I struggle daily with making each moment count and cherishing all that I have today. I pray God will hold you during this trying time and encourage you in your spirit. I don't pretend to understand your situation, but I pray for you and hope for you always. And one more thing, I believe God has given you the personality and abilities to take care of Nathanael better than anyone else on this planet. And one day he will say THANK YOU FOR GIVING ME LIFE AND SACRIFICING SO MUCH.
ReplyDeleteI second what Jenna said! You are an awesome Mama to your boys and I know God will continue to give you the strength and endurance that you need during this time. We love the Banks family and are praying for you! Hang in there!
ReplyDeleteYou're doing an amazing job with both boys!! They will be so compassionate and mature:)No matter where you are, I hope you all have a very Merry Christmas!!
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