This is just a little back story for those of you who have stumbled across this sight by accident, found it looking for adoption information, NF, or Down syndrome. Welcome. We are really glad that you came to visit. We love comments to let us know who all has come by, and if you want to contact us or ask more questions our e-mail is listed on the side.
Jason and I got married in July of 2004. We lived in a small apartment, loved Jesus, and ate a lot of McDonald's. Not long after we had been married Jason had two dreams that we had a little girl named Abigail. When we read that the name meant 'father's joy' we fell in love with it and decided our first daughter would be Abigail. A few weeks later he came home from work and told me he felt like our first child would be adopted. Adoption was something we were already interested in, and had discussed. We went on with life and sort of forgot about all of it.
In October of 2005 we started 'trying' to become pregnant. When six months later we still weren't pregnant we brought up the dreams and adoption again, and decided to pray about it. We felt very strongly like God was telling us to have a home study (necessary for adoption) and wait because he had our daughter for us. So we did.
It was the hardest three years of our lives. Most of our friends had both first, and some second children in that time period. By the end of the wait people were telling us about different agencies we could go through, and other ways that we could adopt faster. We would take it to Jesus, and every time return with the feeling that we were supposed to wait. I would lay on the floor of the nursery and cry and beg God to please bring me a baby. Jason and I took solace in the fact that we knew that God could bring us a baby, but like in the story of Shadrach, Meshach, and Abednego, even if He didn't, we would still worship only Him.
On Saturday, May 24, 2008, I got the fateful phone call from an amazing woman I will refer to only as V. She had chosen us to adopt the little life that was growing inside of her. She invited us to spend time with her, go to doctor's appointments, and for me to be in the room when our little girl made her debut. She was one of the strongest, bravest, and most selfless women I have ever had the pleasure of knowing.
Abigail was born on September 2, 2008. She came out short, round, and not breathing. We spent the next few days in the NICU , but quickly got to come home to enjoy the sleepless nights, snuggling, crying, toothless grins, and joy that is being parents.
We had been very open to the possibility of adopting a child with special needs. As she grew, and met milestones, I began to let go of the fact that she could still have something going on. Her facial features though, they always just seemed a little, for lack of a better word, different. So we made an appointment with a geneticist, mostly to ease any lingering thoughts I had about it.
On May 4, 2009 I sat in numbness as the geneticist counted the birth marks all over my daughter. We had noticed she had a few at birth, and had even discussed the fact that it felt like more kept showing up, but birthmarks are completely harmless. When he got to twenty nine he looked up and started talking about some disorder that started with an 'n' and tumors, and not to worry. I actually felt that weird brain fog that they show on movies. I couldn't wrap my head around what he was saying. He sent us home with a few websites to look at and the word 'neurofibromatosis' (NF).
I remember every detail about the drive home, where we stopped, and so on. I felt like I had just been sucker punched. After the initial shock wore off we decided to look at the sights he gave us. I don't know that it was comforting at all. We read lots about tumors, short stature, lisch nodules, pain, and progressive.
It took us quite some time, but we finally started to understand it more, get a grasp on how it affected Abigail, and connect to people around the country walking through the same thing. We couldn't do anything but look back and know that God knew about her NF when he lined things up for us to be her parents. And for that reason, even if it was hard, we took comfort. (To read more about NF, and how it affects Abigail go here.)
In October of the same year we landed ourselves in the E.R after a car ride home from family produced a little girl who's breathing sounded funny. The E.R. told us she had the start of pneumonia. When we went back to our family doctor after the meds weren't doing much she sent us on to a pulmanologist. After a lung x-ray he made a firm diagnoses of asthma. It took us a little while, but we are pretty good at managing it at this point, and can quickly curb a flare up.
In the summer of 2010 Abigail began to get blisters all over her. One would heal and two more would pop up. We took her to the doctor and we all thought she was having a bad reaction to mosquito/bug bites. When the 'bites' continued well into cold whether, we became obsessive trying to get rid of whatever it was biting her. We were vacuuming her room daily, changing sheets constantly, and still she was getting more blisters. We were sort of at a loss since Jason and I weren't being bitten at all.
In October we went to see the developmental pediatrician for something completely unrelated and she noticed a spot. Almost immediately she said it looked like mastocytosis and we were given an appointment with a dermatologist. That appointment ended up being unhelpful. The doctor told us our daughter had NF (which we had known for quite some time already). Fast forward a while and a large mass on her leg that everyone assumed was an NF tumor turned out to be a mastocytoma (mast cell tumor). Add in the fact that the tumor, her 'bug bites' and her GERD (acid reflux) all started at the same time, and we ended up with an official diagnoses of mastocytosis in the spring of 2011. (To read more about mastocytosis, and how it affects Abigail go here.)
After things calmed down with Abigail, and we felt like we were starting to understand things and manage her care well, we started discussing kiddo number two. We prayed, we talked, and we had a home study. We were in the proccess of being put on two national registries, one for Christians who were willing to adopt children with special needs, and another for families who were willing to adopt a child with Down syndrome. Before we had all the kinks worked out with the registries we got our phone call from the National Down Syndrome Adoption Network. Our second daughter was born on November 11, 2011 (11/11/11 for people who get excited about those sort of things). We found out about her on Novemeber 14, and met her on the 15th. Because everything had gone so quickly we had not really discussed a name yet. After meeting her, we sat and looked through names, talked, and finally settled on Shilo Jendaya. Shilo means 'His gift' or 'gift from God.' Jendaya means, 'thankful.'
Shilo has Down syndrome or trisomy 21. She also has a coarctation of her aorta (repaired at six days old) as well as a complete AV canal. Along with those she has hypothyroidism. All of these things are commonly seen in Ds. On top of those, and likely unrelated to the Ds she also has nearing impairment (severe and profound in one ear, moderate to severe in the other).
So this is us. A family of four. We live in a house now, still love Jesus, and eat more spinach and whole grains than McDonald's.