The sparkle in the eyes of my Uncle Dan has faded, and last night he joined our family in heaven.
Uncle Dan, I enjoyed our talks. I enjoyed my time with you. I enjoyed the times that you sat and took the time to explain faith through your eyes. You were so patient for all of my questions, for that I wish I could once again thank you.
Thank your for your love. Thank you for your brilliance. Thank you for your patience. Goodness, you were always so gracious with all of us. Cherishing each person that came your way and making each person that talked to you feel special and important. You took time for our children, teasing them, talking to them, never making them feel like they were “just kids.” You took time with us, the many many nieces and nephews. When we talked, you listened. That is a rarity in a large family.
I wish we had talked about blogging.
I wish I had known.
There was so much to you that we did not know. The Kirby story made me laugh, I wish I had heard you tell it.
Here is his blog.
What a strange thought that is. Your liver is 36 years old – newsflash readers, you now know Natalie’s mom’s age. Natalie, will you read these words someday? I do hope so. I hope and pray that someday you read these words and know just how much you are loved.
I hope and pray that you read the words on this page and know just how much you were prayed for, worried about, and loved. I hope that you can read the love pouring through your computer screen, or whatever format you use to read this. Someday.
Did you know that the transplant originally failed? Did you know that you were immediately re-listed? Did you know that you are living proof of miracles? We talk regularly about all of this, but I wonder, what will you remember?
Merry Christmas from our family to you!
Even her infections sound cool.
No it is not a Harry Potter spell, though I keep reading it with Hermione Jean Granger's inflection: "Wingardium Leviosa!"
So Natalie had a pretty nasty skin abscess (boil) lanced last week. She had to take time out of the pool and missed out on the Fitter and Faster swim clinic that she was so excited to see. We waited nervously (OK I was nervous, she was oblivious) to make sure it wasn't MRSA AKA Methicillin-resistant Staphylococcus aureus. I read up, and it definately sounds like something that few people, except the immune-suppressed, encounter.
She's back to swimming, and has healed nicely. This report basically just told us what it was that caused the blasted thing.
I suppose that she is getting to old for "Nannie-isms." But I never want to forget this conversation we had about organ donation and death.
She has questions. Never ending questions...
"Mom, I want to be an organ donor. Mom, you know I won't really be dead."
What do you mean?
"My soul will be living. It will live forever."
Right you are, Nannie.
"God, He's got my back."
Yes He does my child.
Sometimes I feel like all I do is complain. I am lucky. I am blessed. I have no doubt that God loves me and has given me many blessings. But these past 2 weeks have been one unfortunate event after another. A series of unfortunate events if you will (and it just so happens that my niece Ava is reading that series right now).
2 weeks ago some electrical even happened. Lightning? ComEd electrical surge? Who knows? I am thinking lightning, since it happened right after a thunderstorm. There is power at the poll on the road, but only partial power at our house. So the ComEd guy, who is taller that my husband, brought in a transformer on wheels. And now the Transformers cartoon theme is in my head.
Then I hit a deer. Truthfully, it hit me. I had seen the deer and it’s friend/mom (I feel the need to give the deer a back story here) and slowed to around 10-20 miles an hour, but it kept coming.
And then I started the grill too close to the house and melted the siding. Ugh.
I think I have had it with my own series of unfortunate events. I am done. Yesterday at church a lady lectured me about the importance of being reverent to the Blessed Sacrament. I don’t think she was actually lecturing me, but she needed a venting post, a sounding board. She needed to express her frustration to someone, and I happened to be the person closest. She’s probably onto something, and now I need to pray on what to do with this because the conversation shook me to my core.
This was my 5 minute Stream of Consciousness Sunday (always a day late) post. Its five minutes of your time and a brain dump. Want to try it? Here are the rules…
- Set a timer and write for 5 minutes.
- Write an intro to the post if you want but don’t edit the post. No proofreading or spellchecking. This is writing in the raw.
- Publish it somewhere. Anywhere. The back door to your blog if you want. But make it accessible.
- Add the Stream of Consciousness Sunday badge to your post (in the sidebar).
- Link up your post to Jana’s site – she came up with these SOC posts. http://janasthinkingplace.com/2013/07/stream-of-consciousness-sunday-a-week-of-mondays/
- Visit your fellow bloggers and show some love.
Canon in D is playing in my ears. Visions of our wedding pop in my head. During this song, my bridesmaids were making their walk; my to-be-husband was looking down the aisle past them, for a glimpse of me. This was it. The “prefect” day we had planned. After 8 years of friendship and dating we were going to be joined in a “perfect” ceremony.
Some believe in foretelling events.
Our unity candle would not light. The wax from the two side candles kept pooling up in my perfectly picked out large candle in the center and the wick would not light. We nervously laughed. I tried to use my hand. My “perfectly” picked out gloves! Why was I wearing gloves? We tried. We look at each other. We looked at the crowd gathered. We laughed. We smiled. The priest Fr. (now Monsignor) Dan Deutsch came over and laughed with us and then helped us light the candle.
And thus is the way of our lives: laughter and Christ are how we discover that the imperfection is not imperfect at all. It is a blessing. Once we invited Christ in, things got easier. And once I learned that my idea of “perfection” was not the same as God’s definition of perfection, once I was able to give up the quest for perfection in all things, life became, well, in a word – perfect.
Organ donation and organ transplants are again in the news. The story of a 10 year old getting a new pair of lungs has again brought the need for organ donation to the forefront. And it makes me reflect on our own journey. We invited Christ into our journey. And have continued to do so.
If you have followed along, you know that our daughter Natalie was born with Biliary Atresia after we tried for 3 years to have a child. You know that after 17 months of liver related illnesses she received a portion of my liver (the topic of the lack of organs is best left for another time). You know that she developed PTLD (Post-Transplant Lymphoproliferative Disease) a cancer of the lymph nodes (lymphoma). You know that she had biliary drainage issues and required a long term external stent (she named it “tubie”) that was often times attached to a colostomy bag. And you know that now her portal vein has clotted off, but her own body has created a by-pass. An “imperfect” solution, but one that is going on 4 years! And through it all, we have reminded Natalie of the miracles that God has given her. We have encouraged her to embrace her faith.
This week is Totus Tuus in our church. Totus Tuus is a Catholic youth program dedicated to sharing the Gospel and promoting the Catholic faith through catechesis, evangelization, Christian witness, and Eucharistic worship. Totus Tuus summer camp demonstrates that one can be a faithful Catholic and still have fun.
And so, the other day, when I asked Natalie “what was the best part of your day today?” She replied, “Kat (Katherine, a college student from our church) taught me how to be First Server today!” First server is the lead altar server at our church. I had no idea it was so important to her. I had no idea that she invited Christ into her life, into her heart when I wasn’t even looking.
forget to sign the guestbook.
I think I still want bumper pads,” she confided, “but I am embarrassed to ask for them.” This was part of our conversation this morning. You see, Natalie is going bowling as part of a summer camp field trip. I told her that I too would like to have bumper pads when I bowled, but I was afraid of getting teased by her father, or worse, of breaking the bumper pads by throwing the ball into them too hard. She said that she couldn’t throw very hard, but she was afraid of getting teased, so she wouldn’t ask for them. And then we talked about how, now that she is older and has glasses too, she is stronger, can see the pins better, and should be able to be more accurate. She triumphantly declared, having come to a resolution in her mind, that she doesn’t “need the bumpers, anyway.”
And so goes life.
We grow. We leave behind the security blankets, the pacifiers, the bumper pads, the symbols of our youth, as we grow. Natalie doesn’t necessarily want to leave all these symbols behind, but she’s starting to feel that it’s what is expected of an almost-fourth-grader. When you are in almost-fourth-grade you are expected to leave behind the things that comforted you as a child. And when you are the tallest almost-fourth-grader in your class and people think you are older than you actually are, you begin to play the part.
An inner voice resolves to have courage. And the strength is all your own.
Looking back on the last post about my own security blanket (Natalie’s inactive transplant listing), I suppose that I have had an epiphany. Natalie is now no longer listed. And that’s OK. I should be more excited, really I should. But it was our “back-up plan.” Our “if things go really bad with this portal vein, at least we have a back-up” plan. Giving this fully to God is terrifying; but also freeing.
How is that possible? I never realized what a burden that “security blanket” was. By letting go, my own inner voice resolves to trust in Him and to rely on the strength that He has given to me.
Never did I think, 8 years ago during that summer of transplant rejection and lymphoma, that we would be having this conversation. And for that I am looking toward the heavens, grateful.
Once we had a security blanket, if you will. I knew that if the Portal Vein went bad, very very bad*, I knew that we had a back up. I knew that she could always get another liver. *I could spell this out in detail here, but some things are best if left unsaid.
Natalie was re-listed for a new liver, right after her transplant in 2005. Her hepatic artery clotted. It closed up. She was listed "Status 1" - meaning they gave her a week.
Her liver, Natalie, and her surgeons defied those odds and her liver (part of my liver) is still going pretty strong today.
And so, as soon as she was deemed stable in the PICU, they put her in "inactive" status on the transplant list. For us, it mostly meant that we didn't have to jump through insurance hoops again. It also meant that should she need it (*see prior portal vein comments) all we would have to do was change her status to an active listed status and she would be back to waiting for a liver.
Her liver is stable.
Her portal vein is holding it's own (knock on wood) too.
And so, 9 years after being listed, Natalie is no longer waiting for a liver.
The following Q&A occurred mostly in my head, though some was spurred from conversations with my mommy.
More surgery? Why? Natalie’s portal vein is 100% blocked. It has been for over 2 years. Maybe 3. We don’t know the exact moment the darned thing decided to close. It’s closing has put excess pressure on other veins, vessels, collateral, etc. Her spleen is enlarged because of the excess pressure.
When? We don’t know. It will depend on Natalie, I guess. We will do a scope and see if there are any varices (varicose veins). http://en.wikipedia.org/wiki/Esophageal_varices (Graphic pictures of the esophagus contained at the link – just saying.)
What if they see varices? If the varices are severe – they will try to band them. One could burst (i.e. the bleed that I spoke of previously) and that would be BAD.
Does the banding work? Not always. But sometimes. Reassuring, right?
Why surgery (again)? The Distal Splenorenal Shunt Procedure selectively reduces the pressure in the varices (the large, swollen veins that develop across the stomach and esophagus) and controls the bleeding. During the surgery, the vein from the spleen (called the splenic vein) is detached from the portal vein and reattached to the left kidney (renal) vein.
So what now? We schedule a scope. Then we watch and wait. We have the luxury of time, for now. She hasn’t had a bleed. That is important. (KNOCK ON WOOD). If she did, the time table becomes much smaller.