To commemorate 2015's World Down Syndrome Day, I decided to pull this post out of my blog draft archives. I started writing this post over 3 years ago, just after Clara was born. This post, full of scattered thoughts, has been left to collect layers of cyber-dust ever since. Today I'm going to try to organize my thoughts from 3 years ago so I can remember these experiences later, and so I will never forget the many ways Heavenly Father has blessed our family while we've been on this journey.
When we heard Clara's diagnosis, to say we were floored doesn't even cover it. Troy heard the news first, while he was in the nursery with Clara. Troy describes his experience hearing the Nurse Practitioner say, "Down syndrome" like being hit in the head with a baseball bat. His head could do nothing but swim. And it was in this state that he had to come tell me what he'd heard. I can't imagine what that burden felt like for him. Knowing he had to tell me that our daughter was different than we thought she'd be.
The moment he walked into my hospital room, I knew something was wrong. I saw his face and my stomach sank. I can still see that image of him walking into the room. I don't know if I'll ever forget it. He was wearing slacks and a dress shirt as he'd come straight from work to make the emergency C-section. He walked towards me. He said a soft, "Hi" and tried to put on a brave face. Then he told me, "They think she has Down syndrome." My first response was "No. Oh no." and I started to sob. Somewhere deep within me, I had already suspected it. There was something about Clara's eyes and ears, the way the nurses kept checking the palms of her hands (for a simean crease, something most individuals with Down syndrome have, but Clara actually does not.)
In that moment, our lives changed forever. At that time, I thought my whole world had come crashing down. My mind was reeling with all the ways our life would be different now. I remember thinking Troy and I would never go on a mission together. What would we do when it was time to retire? Funny that I thought of those things first. But after those first trivial thoughts had passed I imagined the worst. I imagined Troy and I, years down the road, burying our daughter with Down syndrome in the ground. It was all too much for me to wrap my brain around, in those first few hours.
That night, I didn't sleep. I hovered in and out of that pre-sleep consciousness. I would come close enough to sleep that I could feel that relaxation that comes just before you drift off. This is when I would think everything that had happened a few hours earlier was a dream. And I would feel a huge sense of relief, knowing it wasn't real and I'd wake up and be pregnant again. A few times I moved my hand to my abdomen thinking I'd find a baby and realize she was missing. And then my eyes would shoot open and I'd know that it wasn't a dream. And then I'd start sobbing again. I can quite honestly say, was the longest night of my life.
That time was extremely difficult for us. But, now I know better, because I know my Clara. She has brought us such happiness, such joy. I'm much more educated about just how much individuals with Down syndrome can accomplish. And I've even learned the life expectancy for individuals has changed drastically with the advancement in treatments. Life expectancy for Down syndrome is now around 67. It's not to say I don't worry about Clara's future, because I do. Often. However, my perspective has changed so much. And I've learned to try and only focus on immediate concerns. To do all I can to keep my brain focused on the now instead of the 5, 10, 15 years from now. We'll need to cross those bridges when they come. Right now we are working on sign language, and speech, and the preschool routine.
During this difficult time in the days following Clara's birth, there were many tender mercies that were incredible blessings to us. Friends and members of my healthcare team who knew just what to say. There were also powerful and poignant Priesthood blessings that made all the difference. Those are the experiences I jotted down three years ago that I want to share now. For the sake of our family history. Here they are:
During any hospital stay (and I've had many) you find your favorite techs and nurses, the ones that have that extra something that make you feel extra comfortable and cared for. We had a few of those and what they said made such a difference. In general, people didn't know what to say to us when they found out about Clara's diagnosis. I don't blame them. Before we had this experience, we wouldn't have known what to say either.
People didn't want to say they were sorry, but they also didn't really want to say they were excited for us either. A lot of the people we told felt awkward, which made me feel awkward too. I didn't know what to say either. The day I was discharged from the hospital, I was talking to my nurse about this. She was so great, her name was Dawn, I believe. She told me what I should tell people to say is, "I'm sorry things didn't work out the way that you expected they would, but I'm so excited you have this beautiful baby in your life." I started crying saying that it was so nice to have someone understand how I felt. That was just what I needed to hear-- the perfect words. I'm going to remember that for when I'm searching for words to say in future situations like this.
We had several awesome PCTs in the hospital (Patient Care Technicians, or CNAs). That first night I had a Tech named Kitty. She was amazing even though our RN wasn't. (Our RN was SO bad. Wow. Just when we needed some serious TLC, she was lacking in even basic civility.) Kitty spent some time talking to me about what was going on. If we had known before hand that this was coming, etc. She validated that what we were going through was hard and then told me if I needed a hug, she was there, and that she gave them out for free. ;) She made me laugh. We had her several times during our hospital stay. When Clara was discharged from the hospital she told us if we ever needed a babysitter she was more than willing. Kitty was a bright spot among the drudgery of our hospital stay.
The night Clara was born, the Bishop came to the hospital to help give Clara a blessing. It was so nice of him to come. It was late when we were able to do it. About 10:30 pm. His wife, and my dear friend, Helen had even had surgery that day, but he still came. That meant so much to us. Bishop and Helen came to visit us on Sunday, once Clara was in the NICU. We love the Francis family.
Troy gave me a few different priesthood blessing the night Clara was born. One while I was waiting to go into the O.R. and then two more after she was born. The first was after Troy told me they thought Clara had Down Syndrome. He blessed me to know that Clara was a noble soul. And that's when we were sure we wanted to use the name Clara. We both felt it. He also blessed me to heal more quickly from my surgery than expected. He also said something about me having the strength I needed to care for my family. I don't remember anything else that was said, but I did feel peace when he had finished. The hurt I was feeling didn't go away, but it was like a piece of my burden had been removed, and I felt better able to cope with the situation.
Later that night the nurse and staff left me alone from about 1 to 4 in the morning, with the idea that Troy and I could get some sleep. At that point Clara was in the nursery under a warmer to keep her temperature up. I tossed and turned for three hours and never actually fell asleep. But as I drifted in and out in my mostly incoherent state, I could actually feel my body healing. My incision felt warm. I don't really know how to explain it, but I knew that I was experiencing some rapid form of healing. I could tell a difference afterward too. My recovery with this c-section was so much better than my first. While I was in the hospital I was able to get up and move around much better than I did with Jackson. The power of the priesthood is real. The last blessing Troy gave me so I could fall asleep later the next day. After the blessing I was able to relax and was out for a few hours. Sleep does wonders on one's ability to cope.
Through all of this there were lots of prayers for us and for Clara, and we could feel the strength of those. Our faith and the faith of those around us truly sustained us during that difficult time. The healthcare team was very respectful of our faith during our time at Arrowhead Hospital.
We had a cute nurse named Corrin who wanted to make sure we got a priesthood blessing, even though she didn't share our faith. We had a Tech who was also a member of our church. She told us of conversations she had overheard from other nurses discussing our situation. The nurse practitioner who delivered the diagnosis to Troy said she had thought about us all weekend. But that she knew we were "Mormon" and said, "They're going to be okay."
During those first few days after Clara was born, I kept our family and prayers updated with emails. We had so many people worried about us and texting/calling to check on us that I couldn't keep up.
Ten days after Clara was born, I received an email from my Aunt Valerie. She told me my Great Uncle Karl had sent her the following message: "I had a chance overnight to think about Brooke's Baby. God must love the baby very much. He hand picked the most loving and caring parents, grandparents and great grandparents He could find. Tell them my thoughts and prayers are with them."
This meant so much to me. Much of my Mom's family do not practice organized religion or belong to other faiths. Yet they were praying for me and for our sweet Clara.
Three and a half years later, here we are. Some things are still hard. Like the sting that comes when I realize Clara's developmental delays compared to her peers. But I must say, that I have been forever changed by being Clara's mother. I am motivated to be more patient, more kind. Clara's presence in our family has made me want to be a better mother to all my children. And it has made me want to reach out and touch others' lives with happiness, the way she does.
Happy World Down Syndrome Day. From our family to yours.
