The Ball Machine

(warning....long post)

I feel the lump. The lump in your throat that comes when tears are about to spill out of your eyes and run down your face. The lump that usually comes as memories fill your mind. Those memories can be good and the lump can come. The memories can be hard and sad and the lump will come. I get the lump almost every time before the tears come.

Today, as I rocked my sweet Parker to sleep at nap time, my house was quite and still. Chris is at work, Zach at school and Chloe still sound asleep after a long night. As I usually do while rocking Parker, I laid my head back in the chair and rested my eyes. And oh, are they tired. Having two stuffy nose kids makes for a long night - especially when one wants a pacifier and can't breath and suck at the same time. I melted into my bed for only about an hour last night - the rest of the few hours of sleep I got came off and on in the chair.

As I held my sleeping baby, my mind wandered off to a place it hasn't been to for a very, very long time. I am not quite sure what sparked this memory, but I let myself be there in that memory for a bit. It started with the ball machine. A big contraption surrounded by glass so it was not touched or tampered with. This ball machine contraption had small balls that would go through all kinds of mazes, hills, twirly-whirly slides and ramps that catapulted it into a basket and down another shoot. Sometimes it would look like it was going to get stuck, and then something would come smack it and set it into motion again. When the ball would get to the end of the maze, it would wait it's turn to go for another ride through the maze. There were lots of balls going all at once, which made it even more interesting to sit and watch. It was about 7-8 feet tall and made a click-clacking sound. I can picture it so well.

I have forgotten about this ball machine for almost 4 1/2 years. Many hours were spent watching these balls. They were mesmerizing! I am surprised I have forgotten about this machine, but yet, I'm not. You see, this ball machine was at The Children's Hospital in Denver, CO. This place was almost my second home while Karleigh was here. So much time was spent there. So many walks down the same hallways and corridor's.

The ball machine was in the waiting area where children go to get their blood drawn. We waited there many, many times. It was also just down from the hospital pharmacy, another reason we waited many, many times. So, while waiting and waiting, we watched the ball machine. Zach and Karleigh both loved to watch it as well.

As the memories of the ball machine come, I let myself "walk" the halls of the hospital once again. I am amazed at how I can navigate around that hospital in my mind. I envisioned driving into the parking garage and going up and up and up until I could find a spot - preferably a handicap parking spot so I could easily pull out Karleigh's wheelchair and get her situated safely. Sometimes the only place to park was going to the uncovered 6th floor (top floor) of the garage. Winter time was not the funnest to unload her on that level with snow and ice on the ground and blowing wind.

I can picture hurrying into the elevator and getting off at the 3rd floor to go to the Special Care Clinic where her amazing and fabulous doctors were. Dr. Ellen Elias and the others in that clinic became dear friends. Dr. Elias, in particular, saw us through so many rough times and so many diagnosis. Through diligent effort on her part and many tests, she found out what was "wrong" with Karleigh. It was not found out in a simple blood test and she kept trying new things until she found it. Mosaic 5q deletion. So rare that in her 20 years of being a pediatrician/geneticist, she had never come across this abnormality. 5q deletion, yes - but not Mosaic 5q deletion. Everything was a guessing game for her and she handled it beautifully. Dr. Elias and her colleagues sent us for test after test and multiple surgeries from that clinic to determine all the sub-diagnosis's for our little girl (and believe me, there were many!) and to help her have a better life. So much time spent with these wonderful people. Many tears shed in their presence. Even more lumps in my throat as I made it through the appts, only to break down into tears on my hour drive home. And some of the most touching memories of Dr. Elias was her being the very first person in the ER room right after that terrible morning. She hugged and cried with us and shared our pain as she gently caressed Karleigh's hair. We were so grateful to have her there. She loved our girl, and we loved her for loving our girl. And what is even more amazing to us is that she and some of the others from the clinic took time from their very busy schedules (she was the head pediatrician at the hospital - very busy lady) to drive an hour north to attend Karleigh's funeral. We were so touched and so grateful for their support and love.

My mind wandered to the radiology waiting room. Time wise - this was a close second to the amount of time we spent at the clinic. I can still picture the waiting room. There was a big half-circle check-in desk and the door was off to the left of that which led back to the x-ray rooms. There was seating all over. Up in the front was one of Zach's favorite things to play in. (Zach spent a lot of time with us at appts) It was a big truck or some kind of car with a steering wheel. There was a column in the middle of the waiting room with a tv that never had anything good to watch. In the front right corner, there was a huge salt water fish tank that Karleigh loved to watch as the fish swimming back and forth.

This waiting room led back to where many tests under big scary machines plus multiple scans and x-rays took place. Chest x-rays were a common occurrence to make sure her aspiration problems were not causing pneumonia. I remember one of the first scans she had was a Cat-scan. She was about 6 months old. They had to give her a mild sedative so that she would not move at all during the scan. They let me stay there while they stuck her with the IV and while she fell asleep. I choked back the tears. They said I could either go out to the waiting room if it was too much to watch or sit in chair in the scan room and wait. I was extremely nervous for my tiny 12 lb. baby to be going into such a huge machine. (we still didn't know what was "wrong" with her at this point) Watching her, what looked like a life-less body, go into that big CT machine, was more than the lump in my throat could handle that day. I sat there in tears as I waited for the machine to do its job and for them to give me my baby back.

I also "walked" down the very long hallway where we met with Dr. Laoprasert, a Neurologist. It was in the back part of the hospital and was kind of a dark hallway that looked pretty old. She did many EKG's in this part of the hospital and we found out about her epilepsy there. I remember Dr. Laoprasert asking me if I was a nurse because of the dialogue we were having about Karleigh's condition. Uh, no - but you sure do learn a lot while your baby is going through so much. Learning as much as possible about the "Dr. Language" made it much easier to talk to the dr's and nurses.

I even "walked" to the surgery waiting area. We were only in that waiting room 3 times, but it is still very ingrained in my mind. That first surgery when Karleigh was 6 1/2 months old - so scary, but yet so hopeful that it would help her. She had a g-tube (feeding tube) put in her tummy as well as a Nissan fundiplication to prevent reflux. The pain she experienced while recovering from that surgery was the most extreme physical pain I have ever witnessed in my entire life! And to make matters worse - this was a 6 month old!!! I will never forget the prayer I said that night as she lay there crying for relief. Chris had gone home to be with Zach and I was alone with her in her hospital room. I couldn't hold her because it caused more pain. I wanted so badly to so I could try to take the pain away. I couldn't. So I held her hand and rubbed her swollen face and prayed. "Heavenly Father, Please send angels to comfort her and help her through this." Less than a minute later, the screaming that had gone on for quite a while subsided and she was calm. I cried. I cried and cried. There is no doubt in my mind that others were there - angels were there - holding her when I couldn't. She got some relief for a little while.

Another miracle happened when the next day they finally had her pain somewhat under control and I could hold her. For the first time in her life, she was comfortable enough to snuggle with me. She snuggled into my chest and I held on to her and cried. I was so hopeful that I was seeing a glimpse of the future snuggling we would have once her pain went away. And snuggles I got! She was the best!! What was supposed to be a 3 day stay in the hospital turned into a 5 day stay because her pain management was not going so well. After we got home, it seemed that the pain got worse for a bit. My mom was there to help me/us and help she was! After trying to comfort Karleigh for 6 hours and her screaming non-stop for that entire time, my mom volunteered to let me leave and have a break, while she stayed and tried to comfort her. After not leaving the hospital room for 5 days, except to shower down the hall, and then coming home with no relief - it was a break that I needed more than I knew. My mom - my earthly angel! I love her.

As I "walked" the halls and remembered the layout of the hospital, remembered the pictures on the walls, remembered the people that were there, remembered all the time I spent there - I also remembered many wonderful things that happened there. I remember the happy times I had with my girl there in those hospital halls and waiting rooms. I remember miracles I witnessed as I held her hand through every single test and trial that my Karleigh girl went through. I was there for every single one of them. I remember the miracles that came about in my own life because of the things I myself went through in that wonderful hospital.

I am not sure why this morning I got to "walk" the halls of the hospital. But I am thankful for the memory of that ball machine and for the symbolism it plays in my life. I am like the ball that goes through mazes and hills all the time - constantly. We all are. Sometimes they are hard to climb, other times we climb them with ease. Sometimes we fly through the air without a care in the world. We are caught by loving arms that help us on our rest of the journey through the ball machine. We sometimes feel as though we will be stuck and then someone or something is sent to give us a little kick in the rear and we get moving again. When we get to the end of that trial or event, it starts over. Always an opportunity to start again. To try to make it through the course a little bit easier because of the things we learned the last time we went on the ride. Each time we learn a little more and grow a little more. If we didn't, then there would be no purpose and no enjoyment in our time spent in the ball machine (life). I hope that I will be able to enjoy the time, good and bad, that I spend going through this maze of life. I am grateful to so many who have been the thing that has caught me and helped me on the next phase of my journey!