Wednesday, September 29, 2010

The Story of Tait - Part 3

First, if you haven't read Part 1 or Part 2, go here and here.

Now you're caught up.

I have been trying to write part 3 for a while now. But I have some pretty strong emotions tied to it that have caused me to be a blubbering mess while writing it. This part has been hard. Because not only did we learn some pretty scary stuff about Tait, but I also saw God move in a way that I have never seen Him move before. I literally watched as prayers were answered in front of my eyes. And THAT, girlfriend, left me slack-jawed.

So here we go.

Every mom knows every square inch of their baby's body. They know about the freckle between their toes or the birthmark behind their ear. They know how to make a cowlick lay down and can tell you birth dates, birth weights, and shoe size of every one of their children. Because of Tait's ultrasounds, I can now recognize her INSIDES. :) I can now watch as the ultrasound tech rubs the wand across her belly and back and know exactly what I'm looking at. I will also be able to know when something's wrong. Just like I did the first time they zeroed in on her right kidney.

Meanwhile, Spencer and I were at the HEIGHT of conflict about where to move when we came back to Alabama. There were a LOT of tears. There were a LOT of harsh words spoken. There were a LOT of prayers. I was questioning everything - my marriage, my faith, my ability to mother this child who was sick, my ability to mother my other child who wasn't sick... It was a rough time. If we were going to move back to Alabama, I wanted to move to Birmingham. It's a great city with amazing little suburbs that have fantastic schools, etc. It seemed like the place where our family could settle for a long time. Spencer, on the other hand, wanted to move NOWHERE but Montgomery, where our families lived (and still do). We both call Montgomery home - we were raised there. But I knew that going back to a place where you have previously been is hard - if not impossible. Plus, the opportunities for our family were better in Birmingham. But he would have NO PART of it. He had interviewed for jobs in Montgomery - doors kept closing. I was noticing that more and more signs pointed to Birmingham, but I couldn't make him see that. I knew that the only way we were moving here was for God to change his mind.

Tait was 9 months old when a cyst developed in her right kidney. It was scrutinized and measured and noted and observed and we were told not to worry. YEAH RIGHT. 2 months later, she had 2 cysts in her right kidney and 1 in her left. An appointment was made with a pediatric nephrologist at Children's Hospital immediately. We drove to Birmingham (we were living in Tallahassee, remember?) for our appointment. We met this man who told us that Tait had poly cystic kidney disease (PKD) and would be facing a kidney transplant by her 14th birthday. He told us that she wouldn't be able to have children because of the stress on her kidneys. He laid out a plan for her life that included blood pressure medicine, no contact or rough sports (and if you know my family, we are ATHLETES), and very structured weight control. My mind was spinning as I listened to this very smart doctor tell me what a challenge her life would be. I stood in this room, holding my 11 month old, with tears pouring down my face.

Then he picked up her chart and said, "Hold on. The cysts could actually be a by-product of her BWS, but I don't have any experience in that area." Then he said words that I will never forget as long as I live. He said, "There are 4 doctors IN THE WORLD who are leading specialists in pediatric kidney disorders AND genetic disorders and how the two are related." Then he pointed to a door and said, "We have one of them here on staff and her office is right there. Would you like me to make you an appointment with her?" You could've knocked Spencer and me over with a feather. Spencer turned to me and said, "We're moving to Birmingham." My prayer was answered in the basement of Children's Hospital, on a day that was proving to be one of the worst ones of my life. Turns out, it was one of the best.

We made an appointment to meet with Dr. Lisa Guay-Woodford, a Harvard educated, multi-published, BRILLIANT doctor who is as sweet as she is smart. She loves on Tait and speaks waayy over our heads. Spencer and I get tickled every time we see her because when she walks out of the room, we try our best to translate into "normal people words" what she has just said to us. The first time she met us, she told us that she did NOT think Tait had PKD. She thinks that the cysts are part of BWS. She thinks that more kids than we realize probably have renal cysts, but most kids don't have abdominal ultrasounds to check. She thinks she will never have any trouble with them. She wants us to keep them monitored, which we do at her quarterly ultrasounds. She breathed life back into our daughter and told us that she was normal, healthy, and should be able to have 6 kids if she wanted. She eased our minds and calmed our hearts.

We now see Dr. Descartes every year. She is in charge of all of the other doctors. She schedules everything and any new doc is run through her first. It's nice to know that one, of our many docs, is the one in charge. There's no conflict with power. We see Dr. Guay-Woodford twice a year to check and monitor Tait's kidney function (which has been totally normal). We see an allergy/asthma specialist - Tait has seasonal allergies, as well as allergies to cats and dogs, just like every kid on the planet. But because of her large tongue, thus causing a smaller airway than most kids, when she gets any upper respiratory sickness, she is SICK - like hospital sick. It can and does cause airway/breathing issues. We never travel without a stash of allergy meds and a nebulizer for wheezing. But we have a doc monitoring that closely. Tait goes to kindergarten like all other 5 year olds. She is smart, developmentally ahead of her classmates, has a precious shy smile, and has a laugh that will melt your heart. She is expected to grow old, be a grandmother, and live a completely normal life. She is still monitored every 3 months via ultrasound for any developing tumors, but other than that is completely normal.

We moved 3 months later to Birmingham. Spencer looked at the job postings within his company the night we got home from the doctor and found a brand new opening in Birmingham. Very funny, God. :) He interviewed and got it. It was a little bit of a promotion and a little bit of a raise. We bought a house that had been on the market for 6 days. We have amazing friends, an AWESOME church, a wonderful community, and the best doctors in the world for our girl.

There are days when I get a little freaked out at the constant cancer monitoring that she goes through. It's not easy. It can take a toll on a mom's psyche. But God did not give me a spirit of fear. And I have to claim the promise that NO MATTER WHAT the tests show, My God Will Take Care Of Me. He has proven Himself faithful during the first 5 years of her life. And He will continue to be that way. He is the only one who loves her more than Spencer and I do. And My God Will Take Care Of Her.

Praise His Name. To HIM be the glory.