Showing posts with label Marfan's syndrome. Show all posts
Showing posts with label Marfan's syndrome. Show all posts

Friday, February 19, 2010

I Want to be a Mommy When I Grow Up.

My favorite friend's house when I was in early elementary school was my friend Tina's house. She had the most amazing room upstairs that was entirely devoted to playing house. It was, in essence, a miniature house with a wooden stove, refrigerator, a small table and chairs. But the best part was all of the dolls and accessories. Tina had a million baby dolls. And she had cradles and cribs, blankets, clothes, bottles, strollers. It was heaven for a little girl like me. We would play up there in our pretend world at being mommies, having babies who begged to go with us when we needed to go to the store. Ahhh...bliss.

I am the youngest of 7 kids and whenever anyone asked how many kids I wanted to have when I grew up, I always gave a big number. As I grew, I went through lots of career choices..."I want to be a hairdresser, I want to be a secretary, I want to be a marine biologist, I want to be a pediatrician, I want to be a nurse"....it changed often, but combined with all of those was the desire to be a mom. The mom part was a given, no matter what I did I would be a mom too. When my cousins Janelle and Sandi and I played house, one of us always had a pillow under our shirt and gave birth to a doll at some point during the day, no matter what other careers we had as we played.

As Rick and I got serious we talked about the number of kids we would have. I wanted 6 and he thought that was a little extreme. After we were engaged we settled on 4 as a good number. At my first appointment with the cardiologist after being diagnosed with Marfan Syndrome, that was one of my first questions, "can I have kids?" My cardiologist told me yes, but that I needed to have them in my 20's.

A year before our wedding, just after graduating from college and accepting a job in labor and delivery at St. Clare Hospital in Lakewood, I went in for my cardiology appointment. My cardiologist did the exam and told me things were unchanged. Then he told me that he had reviewed my case with the cardiology team and he had some bad news. They felt the risk of pregnancy was just too high. Not only did I have the 50% chance of passing Marfans on to my kids, but the increased blood volume of pregnancy was just too dangerous for me. My aorta could dissect and rupture; pregnancy was life threatening and they didn't feel it was a good option for me.

To say I was devastated would be an understatement. I told Rick what the doctor had said and then I told him that I couldn't marry him. He needed to marry someone who could have babies with him. He needed to marry someone healthy. He told me I was crazy, that he needed to marry me--he loved me and he wanted me, even if we never had children. He refused to walk away.

I wasn't sure I could take my new job now. How could I spend 40 hours a week with pregnant women? How could I be faced every day with what I would never experience? But after praying about it, I felt like it was still a field that I loved and that God would be with me and help me in the process.

So I went to work and loved everything about pregnancy. I loved the way pregnant bellies looked. I loved the process of labor and the miracle of birth. I loved being there to hear that first cry and see the wonder on the faces of the parents and the relatives. I loved the tears of joy that filled my eyes and sometimes even slipped down my cheeks each time a baby entered the world.

And I also grieved. I grieved that I would never watch my body grow with another life inside. I grieved that I would never waddle, or have ligament pains, or stretch marks on my belly. I grieved that we would never have that delivery room experience of watching the new life we created emerge into the world. I grieved that no one would ever look at Rick and shout "it's a boy!" or "it's a girl".

I knew we could still have a family. I knew adoption was a beautiful option and that I would love my kids fiercely no matter how they came into my life. I knew that my niece and nephew who had entered our family by adoption were just as much my niece and nephew as the ones born into my family. I knew adoption wasn't the lesser alternative. But my heart ached that my pillow under the shirt play would never become reality.

As hard as working labor and delivery was in the midst of that, I never regretted it. And the added bonus was I met my friend Martha there. In my next post I'll share how God used Martha to bless us more than we could have ever imagined.

Monday, February 8, 2010

2 Steps Forward and How Many Steps Back?

It was around this date 14 years ago that I got to go home from the hospital after my heart surgery. I was amazed that I was alive, I was amazed that I was up and walking and had only spent a week in the hospital. And here at a week post op I could sing without getting winded and I felt better than I had for months before my surgery. And I still wasn't afraid. I wasn't anxious, that amazing peace was staying with me. I thought this was maybe my new normal. God had fixed me inside and out.

We came home to all of the ice and snow melting, which was great except that we lived in a valley and had a basement and the sump pump couldn't keep up so the basement flooded. My husband was trying to take care of a very sick wife, a 10 month old son and a 4 1/2 year old daughter. A flooded basement was over the top. So, we moved to my parents and I wasn't stressed or worried. Yes!

I continued to improve but after a few days I noticed I was less comfortable laying down, I needed more pillows and eventually just stayed in the recliner. Then it got increasingly difficult to hold my head up, I was exhausted. And then I started to run a fever. So back to the hospital we went and that peace that had been my constant companion decided not to come along. They were concerned I had an infection on the valve--which would mean replacing it--so they were going to readmit me. We did blood cultures, radiologic tests etc.

One problem was that I had 800 cc's of fluid around my heart that needed to be drained off. They do that while you're awake, with a giant needle, and tell you not to move because they could accidentally puncture your heart if you move. Okay, the peace was gone and anxiety was back in full force. They were going to kill me, I just knew it. (They didn't kill me, in case you were wondering) We were in the hospital for another 7 days and I went home on IV antibiotics without a clear understanding of what caused the fever since nothing grew on the cultures.

And my recovery seemed to continue that way. Home, then back because internal stitches pulled loose. Each trip in was worth it, but it was such a hassle. I would think "there, ok, now I'll fully recover" and then something else would happen. On one trip back in I bought a t-shirt from the gift shop that showed a cow hanging over the moon after attempting to jump and getting stuck. It said "Nothing is ever simple" and it seemed to characterize my life.

My walk with God is similar to my recovery. I'll make great strides forward and feel so great and then find myself right back where I thought I had started from. It doesn't always take me as long to move forward again, but it's the continual moving forward and sliding back journey. What I've learned is that the forward motion only happens when I'm not trying to do it my way and on my own. I couldn't make my body heal, I couldn't fix it myself. There were obviously good practices I needed to do to allow myself to heal, but the work was done by someone else. I can't make myself grow spiritually. There are good practices I can put in place and commit to, but scripture tells me that Jesus is the author and perfecter of my faith. I can't make myself have more faith, but I can learn to trust and lean on the Lord. And so that's what I try to do so that I can grow and mature. It's not a quick journey, it's not a simple journey; but it's worth it.