Friday, February 1, 2013


I have often traveled on my summer road trips and always feel happy and comforted when we return home. But I don't know if I can describe the feeling I have when returning home after spending time in a hospital  or medical facility.  As a writer I am always noticing the people around me and I wonder and often times create stories for them in my head.  The same thing occurs when I see certain homes as I travel, I picture the family and life within the home.  Hospitals fatigue me...I feel trapped and controlled.  You are in a place you don't really want to be and the circumstances that occur around you are usually things you don't want to have happen and yet you seem to have no other choice but to ride along.  I remember a time when I felt so fortunate to have never had to step into Children's Hospital...but then Sam decided to change that.  I was always amazed at how my life would seem to stop when I entered that facility...I would look out the window and see all the people rushing back and forth still engaged in their lives, their jobs, their world and mine was only in that room...and I was on the inside looking out...wanting to be out with them...wanting to be anywhere but here.  But then I would look at Sam and I would know that I am right where I need to that time...and for this purpose.

It's funny how as I get older my perspective is constantly changing, reforming and reshaping from each and every new experience.  I'm not the same person I was when I was thoughts, ideas, goals and dreams are continually changing.  If you have a Facebook account you probably receive daily inspirational quotes or ideas...random stories or messages to stop and make you think...some you read and relate to immediately others are tucked into your subconscious until in my case they spring forth at just the opportune time.

I am not going to sugarcoat my latest journey with Sam.  I'm not going to tell you that it wasn't and isn't difficult, often times heart wrenching, that it didn't age me and cause me to re-prioritize my life yet once again.  It was all those things but as a person of faith I know that in any situation there are lessons to be learned, blessings to be seen and joy beyond the tears.  So many things on this journey would have been unbelievably difficult, could have caused me to be bitter or angry if that was where my heart dwelt and my life's experiences hadn't already shaped the person I have become.  I have long since learned that any situation can be made more or less difficult by how you choose to perceive and act in that given situation.

Unlike many people...I have one of the best teachers in the world.  I have Sam and I try to live by Sam's example.  As I prepared for this journey I began to plan for the worst outcome, Sam being in the ICU after surgery, staying in Baltimore for a month and additional medical care when we returned home to deal with Sam's sensory issues and the daily need for pin care which includes unwrapping, removing the old sponges, washing away any discharge and then replacing the sponges and wraps.  But that's where Sam steps in...and God...and they both teach me that I don't know everything, that I'm not in control and my best planning may not be needed.  Sam did not go into the ICU after surgery but instead went to a regular room.  He did need enough oxygen at one point to warrant the ICU but his willingness to work on his breathing was enough encouragement to keep him in a regular room.  Thank you God!  We didn't need to stay in Baltimore for a month and instead returned home after 17 days.  Thank you God!  I adjusted to the process of pin care (can't quite say the same for Jeff, it makes him a bit squeamish) and Sam is tolerating it better than expected so  additional medical care at this time is not needed.  Thank you God!

Our time at Sinai Hospital was a positive experience once we got past the first couple of days of trying to figure out the right mix of pain medication for Sam.  I felt sorry for our first nurse who had to ride the rollercoaster of pain, frustration and Sam's continual pleading to "Please help me, Mommy".  His pleading drove Jeff and I into desperation mode, it is the first time I have ever wanted to call 911 in a hospital.  I felt so helpless, so utterly useless as I tried to comfort Sam as he and I prayed for God's help.  Jeff and I were both physically and mentally exhausted and as much as I try to model Sam my human nature came through and I was angry, frustrated, tired and my thoughts were anything but thankful.  And then Sam turned another corner, the medication began to work and he began to relax, sleep and heal.  I repented for my thoughts and feelings and thanked God for answering our prayers. When I said to Sam "have I told you lately" and he replied "I love you"...I knew we were in a better place.  Sam began to say "Please" and "Thank you" to the nurses and doctors and they began to see the little boy that has captured my heart and changed me as a person.  We became used to the hospital routine, I was responsible for the day shift from 7:30 am to 8 or 9 pm and Jeff, Randy & Ben handled the night shift.  Getting sleep each night was my saving grace to make it through this experience.  I can't thank Jeff, my brother in law Randy and Ben enough for giving me that little piece of sanity each day.

Our nurses, doctors and therapists at Sinai were fantastic.  Even though Sam's most difficult pain episode was triggered by his first visit with physical therapy and I was frustrated with that experience I soon came to appreciate the therapists getting Sam up and moving because each session got us a little closer to home.  I was thrilled with how they showed me to move and stretch Sam's muscles and each step of his learning to move and transfer himself.  We spent 10 days at Sinai and then were transferred to the rehab facility.  The pediatric unit at Sinai is brand new and the rooms are beautiful so moving into an older facility, in a lower level with poor lighting, sharing a room and not being exactly thrilled with some areas that are huge concerns for Sam such as diet and how his immune system would react to interaction with more children and questionable housekeeping was again going to test my patience and my ability to cope.  Again blessings were to be found in the staff, nurses and therapists located at the rehab facility.  Everyone I came into contact with was helpful, friendly and I actually wanted to take two of the male therapists home with me to Wisconsin to continue working with Sam.  We had the same nurse often and she was always helpful, friendly and attentive to Sam and our needs. As we met the children in the rehab facility I again realized that God was working on my compassion, showing me how different life can be and making me appreciate the blessings I often take for granted.  Security was often in the pediatric ward dealing with some children who had anger management issues along with severe health issues.  My mind reeled wondering what their stories were and how they ended up here.  I felt bad for the children that did not have a parent or family member with them most of the time they were in rehab and some had no one coming to see or check up on them at all.  My heart hurt for the little boy who was born premature, appeared to have some burns on his body and celebrated his first birthday...a major milestone..with not one family member in attendance, no cake, no party, no presents and no one beside the nurses and other children to let him know that his life was valued.  The little girl, maybe 9-10 months old that smiled one of the biggest smiles I have ever seen each and every time you spoke to her but hasn't had a visit from family since they dropped her off months ago.  The older children that were dealing with major health issues that have forever changed their childhoods and their lives.  I prayed for the children, their families, their caretakers and that God would bless each of them with something they wanted or needed in their lives.  Very much like Sam, many of them were content, happy children that knew their lot in life was different than most kids but they made the best of it. They laughed, smiled and wanted to play, interact and have fun in whatever way they could.  Sometimes they got in trouble or pushed the limits...but what child doesn't.

After packing up the van, loading Sam, picking up Ben and heading home we were all giddy to finally be on our way.  We reclined one of the captain chairs, put a cooler in front of the seat and covered it all with a pillow top comforter my mother in law provided.  When Sam was belted in he looked like he was laying on a  soft comfy bed and we hoped he would be comfortable enough to make it on the 12 hour drive home.  Ben took a few pictures of Sam snoozing with his hands folded and looking so peaceful.

I drove through Maryland, Pennsylvania, Ohio and most of Indiana and then had Ben take over to complete the trip through Illinois and Wisconsin.  We arrived home at about 2:30 a.m.well before the snow began to fall.  Jeff and Ben carried Sam into the house with the sling and placed him into his bed.  I can't even describe how good it felt to climb into my bed, it was like a little piece of heaven.  My favorite moment was overhearing Sam let out a big sigh, run his hands over his bed and say "Home", "Good to be home!"  I couldn't agree more.

Although Sam still requires a great deal of care and is still on quite a bit of medication it just feels right to be rehabbing at home.  Each day he gets a little stronger and is able to tolerate moving and transferring himself more and more.  We had a rough night of pin care with 2 pins looking a little more red and goopy than normal so we are starting him on an antibiotic today.  Sam is able to stand and with some slight lifting maneuver his feet to transfer to the wheelchair, commode, bed or recliner. He is still on oxycodone, valium, a stool softner and now an antibiotic.  Add on his vitamins, stretching/PT, extension rod placement and removal, pin care, showering, use of the commode/urinal and our day is quite full but we are happy to be home, happy that he is tolerating things as well as he is, happy that Dr. Standard saw bone growth and good placement on the x-ray and blessed by each and every turn on this journey. It may be a long 4 months but it is so good to see Sam doing so well and back at home.  Here is Sam rehabbing in style.

This kid is a trooper!!!

He has enjoyed opening a present to celebrate each day of rehab.  Thanks Lydia and Anne!!

Of course his favorite part of the can probably guess...

Yep, the bubble wrap!!!

But that smile is what keeps me going each and every day.  If he can get through everything that well...I have nothing to complain about.  I hope to share adventures in aqua therapy sometime next week, but right now I'm tired and need to get some sleep.  Good night everyone, just wanted to let you know that prayers have been heard and answered and we ask you to continue to keep Sam in your prayers. May God bless each of you!!


  1. So gad to hear that Sam is doing well. Sending prayers for a continued good recovery & better mobility for Sam.


  2. Vrey happy you are home. I love being home! Where did Sam get his TCU sweatshirt? I graduated from TCU years ago.....just wondering. Hope the four months fly by without complications! Ruth Sharpe

    1. Hi Ruth, one of my blog readers sent Sam the shirt after his last surgery. It is one of his favorites.

  3. Sue,
    I am so happy to hear the you are home and that Sam is doing well. You captured in words a shared experience. I can't think of a more sobering experience than being at a children's hospital, and yet it has helped become more compassionate, more flexible, and more appreciative of the present moment. All the intense feelings that come with pain and suffering, also make the joys, big and small, that much stronger.
    My son is healing slowly, and has two or three months of pt ahead of him before he can walk unassisted. He is going back to school on Monday, so we are thankful for that.
    Take care of yourself, and may Sam continue to recover well.