I took Carmen to the lab yesterday to return a urine sample and have some blood work done. We arrived at the lab at 4 PM, allowing plenty of time before lab closing at 5 PM. After a brief wait in the lobby, we were taken to the exam room in the back.
The lab technician came in and, after brief small talk, began looking for a vein in Carmen’s arms. I wished him, “Good luck!”. Carmen has always been a bit chunky so finding veins has been challenging in the past. As she seems to be retaining fluids (the purpose of our visit), it would seem to be that much more difficult to find a vein this time.
After about 10 minutes, he called in another tech to help. The 2nd tech looked for about 5 minutes and thought he found a vein in her left arm but wasn’t sure. “She’s cold. Let’s try to warm her up for a few minutes and then look again.” So they put warming pads on Carmen’s arms and hands.
About 5 minutes later, the two technicians returned and began looking for veins once more. By this time, a third tech joined them. All three of them took turns with Carmen’s arms. None of them found a vein.
A few minutes later, a fourth person joined us in our ever-shrinking exam room. She took one look at Carmen and then turned to me. “She looks a lot like my daughter. What’s wrong with her?”
“She has a disease called Tay Sachs,” I told her. “It’s a genetic, degenerative, neurological disease. It slowly shuts everything down.”
“Is she going to be OK?” she asked.
“No.” (Now, I’ve replayed this in my head a hundred times since and thought of at least a thousand different things I could have or should have said that would have been more hopeful. But in that moment, “No” was all that came out.)
Immediately, tears welled up in her eyes as she turned slowly and walked out of the room. She returned a few minutes later, her eyes clearly red and her nose still sniffling a bit.
…
I often forget that what is now normal for us is still very raw and almost unbelievable to others we encounter.
Believe it or not, it’s actually nice when people react with heartfelt sorrow, not because I want people to feel sorry for Carmen or us, but because it reminds me that this is emotional. It’s easy to become calloused to what’s going on. It’s nice to feel pain every now and again. It is a gentle reminder that I am still alive and that I still care about Carmen!
I love you Carmen!
…
PS. You’ll be happy to know that they did eventually find a vein in Carmen’s hand and at around 5:30 PM were able to get enough blood for everything except the blood culture.
Hope you all have a very Merry Christmas! I’m going to borrow the upside down video:)
love the photo…..your story plays out in so many ways …..thanks for sharing that here.
There have been and will be many more tears shed for Carmen. The one thing that we need to remember is that when she is with our Heavenly Father, there will be no more pain or sorrow for Carmen and you can look forward to meeting her again some day, when she will greet you with that beautiful smile, shining eyes and a healthy, new body in Christ. She will have the privaledge of being with our Lord a few moments longer than than we who believe. We love you all.
Does anybody else see the beauty in this picture that I see??
At first look, I didn’t even notice the bandage – – I just saw those precious little fingers and could not get over what a beautiful picture of a beautiful part of a beautiful child – –
Thanks Emily. You too! Feel free to borrow the video. The guy who made it is actually out by you (I think) at Fellowship Church (Grapevine). He’s extremely talented!
Thank you, Becky. Lana took the picture. I think I understand your comment that “your story plays out in so many ways” but I am not certain. What do you mean?
Aunt Sharon, it is comforting to know that Carmen will not feel pain or know any sorrow in Heaven. It is for this very reason that we are so conflicted on a regular basis.
On one hand, we want Carmen to be whole and healthy again, even if that means she must leave us and go to Heaven. On the other hand, we still want her here with us, even if she is neither whole nor healthy. Which leads us to continually ask for a miracle…
And while there definitely will be pain and sorrow for Carmen — not having her here with us — I understand what you are saying and appreciate your kind thoughts and words. Thank you!
wow lana, somehow that story hit me hard. dave, your comment above about wanting carmen whole and healthy, but wanting her here with you … well, on the one hand, i knew you felt that way, on the other hand, it says in simple words the tension that must always be not far below the surface in both of you, and it helps me pray better for you today. including for that miracle. wendy
Somewhere, on another blog, I saw someone say that they were praying “sun stand still” prayers. I didn’t get that, until I read Dave’s comment above.
I want to pray “sun stand still” prayers for Carmen.
I am praying for a miracle as well. Please know that when I read your story, my heart cried for her. As a mother, I have been through times when you wish that you could take the hurts that your children are having instead of them. I know everyone is praying for a miracle. I know our God is able. I saw it when we thought Mike was going blind when he was 5. So many prayed and I believe God worked a miracle in him. I know He can do it with Carmen. I am sorry if what I wrote hurt you in any way. It was not meant with that intent. My intent was to give hope. One day, all who believe will be with our wonderful Savior and what a great reunion that will be. Time, distance, death and many things keep us separated and our hope is that we will all be together throughout eternity. This life is just a moment, whether it be Carmen, me, you or anyone. I am so sorry if I hurt you by my comment. Please forgive me!
Your story IS your story BUT your story impacts people…..that’s all I was meaning to say….I am impacted and the people I refer here to a certain post are impacted as well……thanks for blogging your story.
Aunt Sharon, PLEASE do not apologize. I knew what you meant and it was very thoughtful. We are extremely thankful that we will see Carmen again and that she will be healthy and whole when that time comes (besides, who really knows? perhaps we will go first, right?). My only intent was to point out the tension in which we live and the torn emotions that we often feel. You are right; this life is but a moment and it is so important to keep that in mind in both good times and hard times.
Becky, that’s what I thought you meant. Thanks for clarifying. And thanks for your encouragement.
Praying “sun stand still”…now there is an interesting way to put it. Not sure it’s the same thing but God has really been impressing upon me lately that He wants me to stand still…to be still…to sit…quietly…to stop talking…shhh…to stop thinking so loudly and incessantly…shh…and listen…