I had to make a video to fully share how Rob and I are reflecting on 2014. We hear allllll the time from people at how amazed they are with regard to Reagan’s progress. We are amazed too. I think it’s really important to remember where she was though, what she lost and how much she has had to overcome. I can’t do that in words on this blog, it has to be done in the pictures and videos that Rob and I have captured throughout our journey.
As you watch the video, please know that there are so many painful feelings attached to some of the photos and videos.
The videos from March 25, 2014…Reagan looks up into the trees as the wind blows through it, and as we watch it, Rob and I can’t help but break down into tears. It’s like she’s looking up to Heaven…and she doesn’t know what’s about to happen. Neither do we. It was an impromptu backyard play session where I brought the camera and just let it roll. Three days later, we were in the hospital
The picture below brings a pendulum of emotions. It was our first hospital visit and Rob’s face is in agony as he pleads to our Heavenly Father and kisses our daughter…praying that we don’t go through a metabolic crisis. Praying that our daughter makes it out of her first sickness. We never knew what a crisis entailed, we just knew it could be devastating. This was on March 28, 2014.
When Reagan had RSV, we actually went home the next day, only to come back to the hospital around 3 a.m. when she refused to drink her bottle. This below photo is me praying the same prayers as Rob. Reagan was miserable and she was laying on me and I was able to provide her with comfort. B/c of her movement disorder that came after her crisis (and also b/c she’s an almost two year old) it’s often a fight for me to hold her. This was a special moment in time, that I’ll never forget.
What this photo means to Rob and I was the beginning of something bad. We didn’t know what. We didn’t have results…we were just reacting to things as they unfolded. There were so many tests and no answers. The answers came shortly, and our world crashed to the ground.
After Reagan’s crisis, we took a lot of walks around the lake at Arnold Palmer hospital…this was one of those first walks and after we were told Reagan would never do anything and that our job was to make her comfortable. The walks were filled with tears and praise music in the background, specifically the Hillsong United song, Oceans. We didn’t know why God had called us out into the middle of the ocean where our feet were failing and not able to stand, but nevertheless, it’s where we found ourselves.
Dr.’s told us Reagan would probably never talk or smile. So when our nurse Tiffany told us we could bring our dog Bauer to the hospital, our neighbor got him groomed, took him to the vet and provided paperwork to make him officially approved within 24 hours. Reagan’s demeanor changed that day…she smiled. She remembered Bauer. She remembered. We could build off of that. She wasn’t fully gone like the Dr’s said.
News of Reagan’s story spread to this group of mammas on Facebook who are really really into children’s clothing, namely Well Dressed Wolf. I don’t know how many people on the page contributed to this gift basket of clothing, books, cards, etc, but it arrived at our doorstep the day we got back from the hospital, the day before Easter. Some of the moms donated dresses and made sure Reagan had a proper Easter Dress. And the owners of Well Dressed Wolf, Sarah and Shannon, gave us two dresses for Reagan and let us know they were praying for us. The kindness from strangers blew us away. Below is the first day we were home and Reagan looks so beat up from her time in the hospital. She had really been through the ringer and it was really touching to have such amazing and thoughtful gifts from women I didn’t even know and for Reagan to have a dress for Easter.
Someone also donated this beautiful dress from Well Dressed Wolf (below) and in it, Reagan had her first set of professional photos from her crisis. I was so worried how they would turn out. She did amazing…and Rob was super surprised by all the gorgeous photos Dearly Photography took for Rob’s Father’s Day surprise from me.
Reagan kept doing things, like sitting up. Things we never thought would happen. And they kept happening.
I remember the day she kept pulling herself to stand. She did it something like seven times in a row. I sent this to her neurologist and he was amazed.
I believe the only time we’ve gone to church since Reagan’s crisis was to watch our friend’s baby be dedicated. Unfortunately, kids tend to get sick in the nursery at church…and we can’t risk that for Reagan at this point. I’ve also learned that churches need to do a lot of work to cater to children with special needs…A LOT.
Anytime we were able to be in the pool, even our little plastic, backyard pool, it was magical. Reagan was in heaven…her love for the water is about as high up there as her love for Bauer.
I could continue to go on and tell you what each photo and video snippet means to us personally, but I won’t. As I watch the video and the way our lives have unfolded through this year I am speechless, yet at the same time I have so much to say.
Finally, the song by Page CXVI (Breathe on me, breath of God)…is one of Reagan’s lullaby songs on her playlist that we play for her throughout the night. It’s my absolute favorite song on there and whenever it happens to come on and I’m rocking her, it’s like nothing else matters…that song is what I want. Breathe on me…breath of God. Breathe on Reagan, heal her. Whisper your breath into our lives and give us life.
Thank you for following along in 2014. We are hopeful that 2015 will bring more walking, more talking, and other milestones including Reagan feeding herself with a utensil. Our desires are for Reagan to continue moving forward without any setbacks. Our lives are lived at the edge of a cliff with our feet dangling over. It’s so scary at times, and hard, but really rewarding b/c the view is unbeatable.
We hope you can see the miracles that God is performing in Reagan’s life.