Friday, November 11, 2011

Things happen for a reason...

I've been having a hard time sleeping lately so rather than lay in bed I thought I'd write. So apparently there was a new episode of Bones tonight that covered FOP. I heard from my friend Ashley, and this struck me as funny because we had just barely watched an old episode last night of Grey's Anatomy that also covered FOP. How is it that you can go forever having no idea something existed and then suddenly see and hear it everywhere you turn?

Anyhow, Ashley and I got to talking about the reality of the story line on Grey's. I wasn't convinced. Season 3, episode 19 has a 41 year old female FOP patient suffering with internal bleeding on the verge of death, meanwhile her controlling 20 something daughter is building doll houses and yelling at nurses.

I think the reason this bothered me the most is that one of the "side effects" of FOP is Addi should not and cannot have children. Were these characters based on real people?

Myself, having suffered with infertility, aches for those FOP patients that wish they were able to have families of their own. I ache for Addi , and the knowledge that one day she and I will have a discussion about this topic makes my heart hurt. Women with FOP are discouraged from even thinking about having children for many reasons. Their child has a 50% of carrying the gene, if that child survives birth due to the high likelihood of preterm delivery and various other complications including extreme danger to the mother.


In August 2005 I married my college sweetheart. Madly in love, we couldn't wait to start a family and have every dream come true, one after another, just like we had planned. One month after another went by and no pregnancy. No baby. Lots of nephews and nieces, but none to call our own.

As a woman who placed a lot of value on motherhood this was an excruciatingly painful experience for me emotionally. I took fertility drugs that messed with those unstable emotions that made things even worse. Then after all of that, in January 2009 we got word that there was no more point in trying. We were "sterile".

Darkness. Anger. Bitterness. Rage. Grief. Sorrow. Pain. How could the one thing that we really wanted that was a worth while and holy pursuit be denied to us? How could God take this hope of becoming parents away from us? Especially when there are so many horrible people out there that neglect or abuse their children; we would have been great parents and given them a home full of love. I have tears in my eyes right now even just remembering how much pain I felt at this point in my life. I truly felt abandoned and betrayed-- and I let myself feel this way for three days.

On the third day, I kept feeling as though I needed to let it go. As though God was giving me an opportunity to give away the burden and the grief and just trust him. I was still so angry and hurt, but at the same time I knew that if I didn't do it, that darkness I felt could very literally destroy me. So, I let it go. I told the Lord, fine. It's yours, just take it all away.

He did and there was a weight lifted off my shoulders that I can not describe. The next day Daren called LDS Family Services, an adoption agency sponsored through our church. It was a bit of a whirlwind learning all about it but we found that it was most certainly the path that we were meant to be on.

We were told at the beginning that we would need $1000 up front to begin the adoption process and then probably another $5000 to adopt a baby. We thought that if we saved carefully we could have the $1000 together in 6 months and then maybe the rest in another year or two. It would probably take a really long time and that was discouraging. Little did we know that almost exactly a year from our "dark days" a little light in this world would come into our family surrounded by miracles.

The first of many miracles happened in April-- somehow within 2 months that money materialized in our bank account and we were able to start our home study.

The second miracle-- We began our home study right around the same time Addi's birthmother got pregnant.

Third miracle -- Addi's birth mom didn't decide to place until after our profile went online.

Fourth miracle -- She found us. She knew we were Addi's parents. She trusted God was behind it and she picked us.

Fifth miracle -- We weren't going to come until January 15th when the baby was due, but Brittani had a dream she came early, so we went a few days early and she was born the day after we arrived. I was in the delivery room and got to cut the umbilical cord. I had never cried happy tears like that in my life. All of that hurt and pain about not being able to create my own child melted away and was completely overshadowed by the fact that one sweet and beautiful girl had made me a mother by giving me her miracle.

Sixth miracle: All the legal things went smoothly. Addi's birth father was MIA and never signed. He told Addilynn's birth mom that he wasn't ready for any sort of commitment and disappeared, but we still lived fearful for over 6 months that he would swoop in and want her back. He never showed up and finally she was ours forever and for always.

Addi's adoption was nearly flawless and this really helped me see that God is in the details of our lives.

Now switch over to Addi's FOP. At 6 months old she had a run in with a blonde nurse that pretty much set her first FOP flare-up in motion with her immunizations. The results of that were worries about child abuse, boney cancer, and lots of medical bills. All of which were frustrating to say the least and I still had a grudge toward that blonde nurse, but the title of this post is "Things happen for a reason..."

When we first were learning about the possibility of Addi having FOP we watched anything we could find on this mystery disease on Youtube. One of the first things we watched was a story about a girl named Ashley and her experience with misdiagnosis.

If you don't have time to watch the video, essentially, Ashley had a flare-up that was misdiagnosed as a cancerous tumor and in order to take it out they also had to amputate her whole arm and shoulder.

When we first saw this video it had been approximately one year since the run in with the blonde nurse. {I think we never crossed paths again for a reason... there would have been words.}
Even though everything in the past year had been long and frustrating and confusing, I had a sense of gratitude wash over me. Because the blonde nurse screwed up and jabbed our daughter the wrong way, we were blessed to find out about FOP perhaps years earlier than when a full fledged flare-up like Ashley's occurred.

Addi was still misdiagnosed with Myositis Ossificans, but she has all of her limbs. She wasn't treated with radiation {Which almost did happen the second time they wanted to take it out}. We didn't treat her like a cancer patient. 90% of FOP cases are misdiagnosed, but of all the misdiagnosises and treatments to get, ours was pretty mild. Things happen for a reason...


So back to messaging Ashley on Facebook-- that same Ashley that has walked and paved the road for us so that FOP is just a little bit easier to deal with. Back to this business about having children and FOP. I watch the Kurpiel's story and in so many ways it reminds me of our own.  I kind of had an epiphany writing Ashley tonight. We may never know why we go through what we do, but they always happen for a reason. They happen for a purpose.

I went though heart breaking infertility, and while Addi has cured me of childlessness, I am still an infertile woman that hopes to have the opportunity to become a mom again. I haven't understood why my husband and I had to go through this, but trusted that for some reason this was my lot in life, but that I was loved by our Heavenly Father, and that he would always compensate the greatest joys for the deepest hurts.

Still, I haven't truly understood...

Until tonight, I got a small glimpse of one of the reasons of "why". Addi is a super loving and nurturing toddler. She LOVES babies and dollies and teddies and just loves to be a little momma. One day we will have that conversation about her future as a mother.  Physically she may never have the ability to bring a child into this world. She not only could pass the gene onto her child, but could loose both of their lives in the process.

However, from my experience in watching the miracle that is my daughter, I know that miracles follow this child wherever she goes. I will know how she feels when she longs for something she will never be able to do, but I will also be there to help her have hope in the cure that will allow her to live the life she wants to. The cure that will allow her to be a mother if she chooses, should God bring a miracle into her life through adoption or through other scientific advances.

God has a way of letting things come full circle and letting us know he is in the details. Things all happen for a reason.


  1. What a blessed little girl to have such amazing parents.

  2. Shannon, you are amazing. As I read your post, I sat here and cried, my heart aching for your past struggles and for the struggles that lie ahead for Addi. Everything does work out and the Lord is in all the details of our lives. Keep that amazing spirit. She is such a lucky little girl to have a mama like you!

  3. Well while I was reading this post I was thinking the same things that Leah said so I'll just repeat what she said. Shannon you ARE amazing! One of the thing that stood out the most to me was that it only took you 3 days to let the pain go to put the atonement into affect. You are the best mother for Addi, in may ways, you are amazing!

  4. Shannon, thank you for your testimony. You are such a wonderful mother, and it is so true that God is very much in the details. Addi is so blessed to have wonderful parents that will help her understand Heavenly Father's plan for her. We love you so much and are praying for you!

  5. I don't even know what to say. You are all so amazing. And you have such wonderful family members. I've been reading a book called "Divine Signatures" by Elder Lund and everything you'd said here is just that - many, many divine signatures. I think of you often and pray for you guys.

  6. I've read this several times, and each time I cry. We love and admire you guys so much.


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