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.
9 comments:
great post. Glad the tests were good for you this last trip. I love watching the med center show and seeing her awesome story. I still get chills knowing everything that happened from your blogs. don't know how you watched it. meanwhile your kiddo is amazing! Can't wait to see her follow-up in the show later on.
have a great week!
Blessings, blessings and more blessings.....we will never truly understand the awesomeness of God and how He really does have our best interest in mind! Thank you for posting and may God continue to bless you all:)
I have been meaning to tell you I have watched all the episodes--last year, too. I sit, glued to the TV (we can do YouTube on it) and bawl my eyes out. I pour out prayers for you guys. I'm so inspired by your faith and your family. Josh can always tell immediately the days I've been watching "Rylynn's Show" because y'all are all I talk about. Andrea, I am so blessed to know you guys, and you are truly in our prayers.
I LOVE this post. I tell myself all the time that God entrusted Ry to your care because he knew you could handle the journey. There have been so many times this blog has helped me focus in life and more importantly, remember that we are all in God's hands. I am not sure if you are supposed to do something amazing. But I know from personal experience that your journey and sharing has made a HUGE difference in my life and my relationship with God. So Thank you. And God Bless you all.
Wow! an amazing post. I believe that God has a plan for us all - thanks for sharing. I know God used Ry's journey and your blog to minister to me and help me grow closer to the Lord. I felt like I had a front row seat, watching God perform miracles for Ry, through reading your blog, watching the series and updates from fellow Aggie friends. So many times - seeing the amazing power He used, it has brought me to my knees in prayer for ya'll so many times. and also so much of a new perspective in my own life, for my time with my husband, and my own little girl, Ruthie.
God IS already doing amazing things through you, even though you may not be aware of it. Your story has touched so many lives - You are already making a difference!
May your family continued to be blessed by Him and by such sweet friends that care so much for you. :)
Gig Em and God Bless!
Sweet Andrea,
This blog, which has openly shared your thoughts, struggles & feelings has already been used by God!
You have an honest & very genuine way of writing which is so very touching. I would imagine that at some points along the way you have perhaps wished that you had never even started this blog--I don't know how you managed the time to form your experiences into words which other's can relate to. But, you did! Even during ALL of those countless days of little to zip amount of sleep!
Regarding the Children Med. Center Dallas programs; I honor and respect both you and Gilly for allowing your story; the struggles, pain, vulnerabilities,tears...and ultimately JOY to be
shared with others. Especially since the 'outcome' was un-known when you agreed to do it. That, as everything has been-- was a leap of faith for you to do that.
The most difficult part of Trusting our Father is really letting go! But, I don't have to tell you that!
Because you have reminded Me of that fact.
Continued Blessings to your Precious Family! What an Amazing God we have!
It is 12:30am and I have cried my eyes out. I did not get to see these when they came out on tv. I have spent the last two hours crying at all the memories flooding my mind and heart. I was remembering what life was like before rylynn and Leah got their hearts and what it s like to be told that a new heart was found. The fear and worry of not knowing what the outcome would be after they took our sweet girls from us and the over whealming joy at seeing their sweet pink cheeks just after the transplant. I have re cried for the families who gave such a life saving gift of a heart and I have rejoiced over what out girls look like right now. Healthy strong and alive. Thank you for sharing these with me and everyone else who reads your blog. I love you guys and still pray for a long and healthy life for Rylynn.
Thank you
Katie P.
The post above are right. The "amazing" things you feel you owe, are being done. In every bit of your journey that you share, we all learn perspective, gratefulness, and humility. These are not easily learned without being able to walk in someones shoes. And you have enables us to do so. Thank you for sharing.
Andrea,
You have already made a difference in the world. Rylynn's (and your) life have shown so many others what faith truly means, and what a great blessing each life God creates is to this world. You have strengthened others' faith and trust in God's plan. You have shown others through your story how very important organ donation is, and how important it is to spread the word about donation. I personally have signed up for bone marrow donation because of Rylynn's story. I had always been afraid of the pain associated with the procedure, but even though Rylynn wasn't waiting for that sort of donation, just seeing your family's struggle it became so glaringly obvious to me that the sacrifice of some small pain was no reason to potentially have another family waiting in that same limbo if the answer was in my blood. If I can help to change the life of another person through that sacrifice it will be another change to the world from the life of your precious child. I don't tell you this to gain some kudos from the world. I am not spreading the word regarding this to others except for my family, but I wanted to share so that you could know that you really have changed the world. You will never know the difference you have made, but the changes are like drops in a river. They make ripples, and the ripples eventually lead to the sea. You and your family are so incredibly strong and faithful, there are no words. Thank you for sharing your story. You continue to be in my prayers.
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