Things around here have been busy. As it should be.
I can't wait to post some pictures of what we've been up to. But I wanted to share our most recent trip to Dallas.
We had another cath and biopsy during this past week. Our results were all favorable! Ry's wedge pressures were down for a second time in a row. We can now say they are trending down and we hope to see more of the same next month. Biopsy results were a 1R which is also good. I can't believe in just a few weeks it will have been 6 months since the transplant.
I often wonder if this crazy feeling will ever leave us. The feeling you have each day you spend with her, thanking God for our blessings. This is how we should all spend our lives, right? Humbly, thanking God for each moment we have with her at home. I hope I never lose this feeling, in twenty years I pray I'm still living each day this way.
It leads me to also wonder if we'll always have this fear that it could all be taken away so quickly. That is a part that I hate. I know it's what breeds the humility that I desire, but sometimes I wish I could just lose the fear for a moment.
I do think I have overcome the feeling of guilt a bit. For a long time I wrestled with why we were blessed to have the outcome we did, when so many others are not so lucky. And why the donor family had to suffer the loss of their child. Why did we deserve to celebrate the life of our little girl? But I've had to re mind myself that I am not meant to understand all of God's plan. I must trust that He has a plan for us and we are doing our best to live it as He would want. I can only pray for the healing of those who have lost their children. My heart aches for them every day.
Soon after the transplant I had another overwhelming emotion. It was this continuous burdening feeling that because we had truly been given this second chance that it meant we had to do something amazing. Not just the kind of amazing that you hope for your kids or for yourself one day, but that we were meant to bring about world peace or stop hunger or something. I felt I could never live up to the miracle we were given. I know that God is not in the business of making deals. He blessed us and only asks for love in return.
Do I hope that one day I can make a difference in the world, of course, but I don't think it was meant to obligate me for anything. I think I just feel the motivation in my heart now more than before.
I don't know why I felt compelled to share this small piece of my emotional journey with you today, but maybe it will help someone reading this blog who might be going through something similar. Either way, it just felt good to share.
I have also failed to share the following links with you all and since I'm in a sharing kind of mood, I guess now is as good a time as any. Many months back you may recall that I mentioned and I believe posted links to the Children's Med Documentary series that the hospital did. We were a part of that series. Without knowing the path of Rylynn's care or the outcome of her situation, the hospital asked us to be a part of the program. We agreed and man did her story make for some drama!! We appeared in most episodes for a few minutes as they shared Ry's story of waiting for a transplant while on the Berlin Heart. But when the season ended last year, we were still waiting. The hospital says that many folks actually sent correspondence to the hospital asking the outcome. Because so many of the employees of the hospital watched the series it was funny to see how our little fan club grew. It was probably also because when we did venture out through the hospital we were hard to miss with Big Blue and our entourage in tow!
Sooooo, now Season 2 is airing and Ry has had a great follow up to her story. I am not sure, but I believe she will have one other small cip about her in the upcoming episodes because they did a little filming as we were discharged and a bit after. But these two episodes are really unbelievable. Seeing behind the doors into the OR was so hard for me. Hope you enjoy!
Children's Med Dallas - Season 2 Episode 1
Children's Med Dallas - Season 2 Episode 2
Oh yeah, and feel free to look for last years episodes, Ry's visit from Miss Reveille and a few other videos about Ry's time at Children's.
