Wednesday, June 4, 2014

Our Journey: Delivering Deacon

I have gone back and forth on whether to share our story of what has happened over the past several months.  I debated on whether to keep this private, but my heart longs to share my little boys story.  What keeps popping in my head throughout our journey is something good HAS to come out of this.  So, I hope that somehow our story can provide hope or encouragement.

We found out in early September that we were pregnant, and though King was only 9 months we were very excited.  We immediately started thinking what would we do with two children under two!   We of course shared the news quickly with our family.  We found out baby #2 would be due June 7th, which meant Kingston would be less than 18 months.


My first trimester was very similar to my first pregnancy, everything was normal at our 12 week and 16 week appointment.  I had gained so much weight by 20 weeks with Kingston, and I was so much smaller this time. I felt great!   We couldn't wait for our "gender appointment" right after Kingston's first birthday party and Christmas.  

I will remember January 3rd more clearly than almost any other day.  We were driving in the truck talking about how we should just enjoy the excitement of not knowing because this was probably the last time we were going to do that.  We only planned on having two children.  When we were having the ultrasound done it took longer than it did with Kingston, which should have been our first sign.  The technician was able to tell us that it was a boy.  We were so excited K would have a brother to rough around with.  Steven and I both have brothers and were so excited for Kingston to get to experience the same joy we get from our siblings.  We went in to meet with the doctor and I will never forget the look on her face and her saying that the ultrasound did show some abnormalities.  She said the legs measured abnormally small and wanted us to meet with the perinatal specialist.  She said they didn't observe any other abnormalities from our ultrasound but the specialist would be able to tell us more.  We immediately went down to the second floor of the hospital and the specialist saw us immediately.  That should have been my first clue that there was probably something seriously wrong, but I couldn't let my mind go there.  After meeting with him he tells us it is definitely skeletal dysplasia, which is what we were familiar with as dwarfism.  He told us that 25% of these pregnancies are lethal, but scheduled us for an MRI the following Wednesday in Dallas.  At that point there were so many questions and thoughts going through our minds.   What are we going to need to do to raise a child with a disability?  Will there be other medical problems besides just physical needs?  Will I ever be able to work again?  How does this impact Kingston?  This just seemed like a cruel joke, our last name is Small.  We talked about how so many people have such a stigma about dwarfs.  It immediately broke our hearts and we knew our lives would never be the same.   We also knew we needed to be prepared that our child might not survive, which I couldn't allow myself to think about.  My husband did a lot of research over the weekend and read several articles by a doctor that was considered the guru on skeletal dysplasia.  

The next Wednesday we drove to the hospital in Dallas, and I just had a bad feeling that we were going to get worse case scenario news.  I remember laying in the MRI and I knowing what the doctor was going to say.  We sat down with her afterwards and she shared the news that she was 99% certain this was a lethal pregnancy.  She had sat with her team of doctors, which happened to include the guru on skeletal dysplasia, and they concluded it was one of two lethal types.  It was devastating.  Isaiah 40: 31 provided so much comfort to me.  It says, "But those who trust in the LORD will find new strength. They will soar high on wings like eagles. They will run and not grow weary. They will walk and not faint."  

Over the course of the next four months I learned so many things.  When we found out it gave me perspective on how to not be as quick to judge other people about continuing a pregnancy when they find out news like this.  I knew for me I couldn't consider it.  I had felt my little boy move since 14 weeks, he was part of our family.   Throughout this journey we were shown so much kindness and grace by our bosses, colleagues, friends, family, and doctors.  In this terrible and most difficult time in our lives we also saw how the goodness of Christ through so many around us, and how humanity still has so much good to offer.  We also realized how what truly matters in life is the relationships in life.  I can say that I know this type of situation can define a marriage and my husband was a rock for our family.  Nobody could have handled it better than him.  He was loving, strong, and didn't miss an appointment.  I pray that K gets this from his daddy.  

I have often heard the saying that God doesn't give us more than we can handle, but I don't know that I agree with that.  I think God provides for us through situations that allow us to get through it.  As horrible as this was, he gave us strength and courage and placed people in our lives to get us through it.    We were able to see little miracles along the way.  The doctors we worked with included the guru that people fly from all over the world to see.  Come to find out there was a lady in my school who went through almost the exact same thing, and even had the same specialist.  She provided so much comfort and was able to answer questions that nobody else could.  I am so grateful to my doctors that were able to give me advice that agreed with my spiritual beliefs, our colleagues who covered for us when we had doctors appointments, our families who helped out so much with K, and our friends that we were able to talk to.  

On April 23rd we had Deacon at 4:39 p.m.  God was so gracious in giving us a peaceful delivery and we were able to spend some sweet time with him.  I was so scared of what delivery would involve and what would happen afterwards, but I am so thankful the short time we had with him.  I don't want people to feel sorry for us, but I also don't want to pretend it didn't happen.  He will always be a part of our family, we just delivered him to our God earlier than we had hoped.  I have a picture of my husband with K that is just like this one of him and Deacon.  I look at it daily and am so thankful that God gave me a husband that loves our family and leads us with such wisdom.