Superhero

I wake up a lot randomly at night and think.  I normally think about our girls and our lives together. I think a lot about Levins. I think about DS as a whole.

I challenged myself the other night to think about what DS means to me as a Father. I was inspired by another Father who posted a video of the same challenge. I guess it means a lot of different things to me. It means love. I never knew how much I could love someone so unconditionally until we had Rett and Levins. Its hard not to love a child who smiles all the time and never quits. Levins does not know how to not love.

I think of pain. The pain that she has been through makes me physically sick when I think about it. I think of beauty. People who are blessed with DS see the beautiful side of life. The glass is always half full. They honestly live life the christian way. I think of joy. The pure happiness that Levins has is remarkable.

We had a rough week or so last week. I never thought about how bad a cold could be for Levins. She of course is still not very good at swallowing. Having a cold and not being able to swallow can lead to a lot of things. One being Aspiration Pneumonia. Seeing Levins sick is tough. She has been through so much. I honestly was devastated that she was going through this.

It was a hard time on Rett, Cullie and I too. The only time we got to spend together that week was dinner the night we got discharged, but then Cullie took Levins back to the ER that night and stayed the rest of the week. It was a grind. Levins required one of us to be there. Not that we would not have been up there anyway, but there was no way around it. Cullie and I rotated nights and days at the hospital. I have a huge amount of respect and thankfulness for Cullie after spending a night in the hospital by myself with Levins. I had to make sure she had everything she needed. I think I slept one or two hours all night. From changing diapers and the food pump to nurse visits, doctor visits, respiratory visits, and play time, it did not allow much sleep. I will never forget holding her arms down while she got an IV. That scream will be in my dreams forever. I think she ended up getting 4 or 5 IV's that week. She was pretty stopped up and pretty much vomited all of her secretions. That was tough to watch. Constantly suctioning her made it easier for her to breathe. She ended up running a fever of around 103 for a couple days. Needless to say I am glad we are over the hump of our first cold while at home. She deserves a couple days of good health and smiles.

I try to talk to as many people as I can when I am at the hospital. You can learn a lot about people in general from listening to their stories. I met another man in the hospital elevator. He was heading up to the 11th floor. That floor scares me to death. It is the pediatric cancer floor. He told me he was taking home his 11 year old son that day. I said I was so excited for him. He proceeded to tell me he had 6 months to live........I was in complete shock. He told me he didn't always believe in God but through all this, he was a believer now. I wake up at night thinking of his son and him. Thinking about how much pain they are in. Every time I think to myself how are you going to get through this? I think of him.

I am a big believer in treating everyone with respect and being nice in general. I talk to the tech's and cleaning crew in the hospital rooms just as much as the doctors. I know most people think I really talk to brick walls but I think they need to be thanked for what they do. I was talking to a tech one night about faith and other things. I brought it up which I could tell she was excited. She told me a story of a man who passed away years ago. He was alone. No one can to visit him. She finally asked one day where his family was. He stated he did not have any family left. He said he knew now how selfish he was for not wanting to have children. All the money in the world could not bring him happiness in his last days on Earth. That hit me pretty hard. It taught me even more to pay attention to the relationships inside the four walls of my home.

I thank God all the time for bringing Levins into my life. At first I honestly did not know what He was doing. I still ask Him why does she need to go through so much pain. I pray that He will put the pain on me instead. I thank Him, though, for allowing me to see a child who knows only the good in people. After she was done screaming from the pain of her IV needle pokes she immediately started to smile at me. How could she smile? She is honestly happy to be alive and fighting. She is my superhero.

My favorite time of the day is the morning. I get excited to see Levins when she first wakes up. Normally Rett is in our bed by then and everyone is together. Levins wakes up in the best moods. I think you can see her smile from space. She wakes up and talks and talks and talks. Those moments are moments that I know will not last forever. Pretty soon Rett won't think it's "cool" to come lay in our bed and Levins will be in her own room. The point of this is to enjoy the little things in life. If we all woke up every morning and smiled, think about how much we could get accomplished?

Pray for my girls. Pray that Levins will get healthier by the day. Pray that Rett will have her Family all together for a while. Pray for Cullie that she can continue to be everywhere she needs to be at home. Pray for me that I will grow into the rock we need me to be. Thank you for love and support.