The Steps I Take

Warning: This is not a happy-go-lucky post. This is me, sharing my heart!

Keyan and I are finishing our 15th day in the hospital with no end in sight yet.....I can not believe it. My mind can not come to terms with the fact that I have no idea when we are going home. Nothing is going right. We make a small step forward only to take a giant one back, and although we have been down this road far to many times, it is really taking a toll on me. A couple of years ago during one of Keyan's admissions, I took to walking the halls. Floor nine center at Devos Children's Hospital is one big rectangle, seventeen times around the "block" is a mile. So, whenever Keyan is sleeping, or there is a nurse or therapist in her room, I go out walking. I even have a friend that comes and reads to Keyan so that I can go walk the floor.

The staff all know this is what I do and also have learned that I am probably walking because I need some time to think. It is extremely difficult to have deep rational thoughts while confined in four walls with a five year old! I am not inherently an exercise fan but I have learned that the rhythmic sound of my feet hitting the floor lulls me into a world where I can access the depths of my heart and deal with the emotions that boil up. My thoughts this time around have been more reflective than usual. Five years ago the girls were born in this hospital and thus we began on this crazy journey. Five years ago, I was discharged from the hospital and had to walk out to the car without my babies. How ironic that we are still doing that?

While walking I ponder life from Keyan's point of view. She is such a trooper with an amazing spirit. Through everything she is smiling...it is unbelievable. She never holds a grudge after we poke her for the hundredth time, she never gets angry at me for holding her down for another procedure. She greets everyone with her infectious, twinkling eyes, even though everyone that comes through her door is wearing a gown, gloves, and a mask. She is so tolerant and forgiving.

While walking, I try and deal with the guilt I feel about what she goes through. We do our very best to give her the best quality of life possible, but for me as her Mom, it is never enough. Is there something else that I should be doing? Is there more research for me to be seeking out? Do I need to advocate for her better? What can I do to make her more comfortable? I figure out calorie counts in my head, I go through the lab numbers from the morning making sure we haven't missed anything. I wonder what movies and crafts I can find to keep Keyan entertained in her tiny little room. I question the fairness of this whole situation, and wonder how my family is doing without me. I wrestle with thoughts that are to private to discuss but that haunt me in those quiet moments alone.

During my trips around the ninth floor I do a lot of talking to God. It is probably more like yelling, arguing, screaming, crying, and debating with God but you get the picture. I know we are blessed in so many ways but why does Keyan deserve to go through this? Why does she have to be separated from her family time and time again? Why is it that the nurses become my friends and my support system? How is a person supposed to stay "alright" when the abnormal becomes their normal? When will this ever end for her? Will she deal with this her whole life? Will this be the time that she doesn't recover? How long can she sustain a life of medical complications. I know these are disturbing thoughts but these are the things that I grapple with while pacing the floors. I think about how much I love her and how much joy she brings our family. Her idiosyncrasies that at times drive me crazy bring a smile to my face while I am putting one foot in front of the other.

So often, the nurses will ask how many laps I have done...the truth is I don't always keep count, I get lost in my thoughts. The thing I know for sure is that in the last five years I have walked far too many miles on this floor. Walking has become a survival technique for me, time to purge my head and heart, and prepare myself for the constant battle of taking care of Keyan. The thoughts bounce around in my head until I can settle them by walking. Who would have thought that I would find solace and some peace in the hallways that have become our home away from home?