Finding My Way....

To say the last couple of months have been difficult is an understatement. Deciding to proceed with another hip surgery and choosing a surgery that includes an external fixation device for a child that is immune compromised and then deciding to do that surgery out of state was probably one of the toughest decisions I have had to make in my journey with Sam.  Then a month later to lose the person who was my rock, my biggest supporter and Sam's #1 cheerleader was devastating.  There is not a day that goes by that I don't miss my Mom.  I try to support my Dad but can't even imagine what it feels like to lose the person you loved more than yourself and spent the last 60 years with.  Add to that the daily care that got completely side tracked with continuing issues with Sam's pin sites.  I am convinced that Sam's body just does not like the external fixator.  We have had infections, a large amount of granulation tissue, holes that seem to grow or split open just as I get them healed, creative pin care techniques which have included different wrapping techniques and the use of Medihoney, a granuloma, holes appearing in the split tissue above the pin site holes and a blackening of healed tissue.  Add to that Sam's issues with fever, severe constipation from his pain medication that we weaned him off of, digestive tract issues that include extreme amounts of output, being able to walk and then not being able to take more than 2 steps and you begin to get a feel for what these months have been like.  Sam has had good/bad nights, good/bad days and we have had a few times when texting/calling doctor's personal cell phones or having them do a home visit has been required. I thank both Dr. Steinert and Dr. Standard for putting up with my x-ray questions, pin site comparison photos and helping me get through all of this.

And yet...I am finding my way...in my own way...and in my own time...one day at a time...and sometimes one moment at a time.  I have days when I'm thankful just to crawl in bed at night and know that I made it through.  I attempt to wake up each morning...ready to face whatever comes my way.  Sometimes I'm successful and sometimes I fail.

The thing about grief that is really, really hard....is the finality. The knowing that the person you loved is gone forever and you are not going to see them or hear them again on this earth.  My heart has not come to accept the reality that my Mom is gone.  I can still picture what she would be wearing or I think I'm still going to hear her voice or see her with my Dad. It just doesn't seem possible that she was here one day and gone the next.

Taking care of Sam during these difficult 4 months of the external fixator is both a blessing and a curse. As much as I would like to just curl up into a little ball, stay in bed and let the world go by...I can't.  Sam has medications, nutritional supplements, transfer/movement, pin care and a diet that he requires my help.  Now that doesn't mean I don't find time when he is medicated, has gone to the bathroom and is enjoying his breakfast in his favorite recliner while watching Netflix to sneak away and curl up and crawl back into bed, or to take a shower and cry my eyes out or take Buddy for a walk in the woods with the snow mixing in with my tears. I have those moments too. Sometimes I curl up on my couch in my bedroom and open the Bible and read the first verse I come to hoping and praying that it comforts me and takes some of the pain away or that it is a secret message from my Mom or God telling me, guiding me through. Sometimes I pull out my Angel Catcher journal and try to tackle another page hoping that by writing I will work through the pain and grief but instead I find myself sobbing uncontrollably as I try to put my feelings into words.

Rationally I know that life goes on and we are to pick up the pieces and continue on.  I know that my Mom would want me to be the best Mom, best wife, best daughter, best sister, best friend, best Aunt, best cousin, best employee, best community member, best me that I can be and yet part of me wants to scream "Yeah Mom, but that's what you always helped me with."  My Mom was the person I went to, confided in, vented to and talked to.  She always made me feel better, stronger, she cried with me, laughed with me and always supported me.  My Mom was the type of person I could call at a moments notice when I forgot to check my calendar and ask her to watch Sam and she always said "Yes, no problem".  She was my respite care provider.  She has talked me through tense moments in the ICU, frustrating moments as I tried to figure out medically what was happening with Sam. She was there for me after Ben's accident, my father-in-law's passing, Danielle's eye surgery...always listening and comforting...listening and encouraging.  She was there to see Sam learn to walk, ride his bike and when he began to read and speak.  She helped me do Sam's NACD program with him so those moments would be possible and she and I were elated to break through the diagnosis barriers that Sam was originally given. She loved and believed in that little boy as much as I do.  Sam's multiple diagnosis, his medical needs, his vitamins and diet never phased her.  She never discouraged me from trying new things with Sam, she didn't judge or quickly jump to "do you think that's necessary or do you really think that will help?"  She never doubted for a minute Sam's true potential. She didn't see him as a child with Down syndrome, brain injury, Perthes, hearing impaired or any of it...she loved and accepted him as Sam.

How do you find someone to fill those shoes???  I can answer that...you don't...but the lessons she taught me ...the way she encouraged me...the things that I love and miss most about her is the legacy she left to me and I know she expects me to step up...step forward and do her proud.  It will take me a while to regain my strength, my stamina...right now I'm happy when I just get through a day and Sam and I go to bed healthy and okay.  Stress does terrible things to your health and Sam's decline has made me aware that I need to take care of me in order to take care of him. As Sam was going through a bout with fevers and pain his actions and reactions mimicked what we saw my Mom go through as she struggled and lost her battle with Sepsis. For a brief moment Jeff and I both wondered out loud if God took Grandma in order to get heaven ready for Sam. It's crazy what your mind will do when it is struggling with grief and stress. We both stopped and prayed. I spent most of that night on my knees next to Sam's bed watching him sleep, checking his temperature, monitoring his pulse ox and praying that we were wrong.  I was elated when he woke up the next morning with no fever and smiling even though that was the day of my Mom's funeral and I would have to say good-bye to my rock. When my Mom was in the hospital she didn't look at all like herself but the day of her funeral she looked beautiful, at peace and resting.  Sam even remarked that Grandma was sleeping.

Lately my thoughts have wandered to our next road trip...yes escaping is a valid response.  But interestingly enough they have also returned to my faith and Sam's future. My faith became established and strong many years ago while I sat in Children's ICU wondering and praying if Sam was going to take his next breath.  It was a time in my life...when life as it was happening...was too much for me to handle.  I had to put everything in God's hands.  I watched Sam stop breathing, I watched all his stats begin to drop, I watched the crash cart come flying into his room and I dropped down to my knees and pleaded that God allow him to live.  At that moment, with all that was happening I knew that God was the only person that could take control of that situation.

I felt that same desperation again when my Mom's heart stopped beating in the ICU at Aurora...but this time that prayer wasn't answered.  As I listened to them work on my Mom behind the pulled curtain and held onto my Dad's hand and listened to him plead with God that he would love and take care of Marilyn no matter what, just let her live and don't take her away from me...my heart broke.  I knew that what my Dad was asking for was not what my mother wanted, if she couldn't come through this and do everything she loved to do she would rather leave this earth and she did.

I'm not really mad...I'm frustrated, sad and a little lost but each day I know my Mom is pushing me, challenging me and guiding me.  I don't think the Angel Catcher Journal just showed up on my computer by chance, my Mom knows my therapy is my writing.  I don't think the link I clicked on that I thought was taking me to an article on "wound care" but instead took me to an article on "Little House Living" which of course turned my thoughts to Sam's future...was a mistake.  Just as I believe that my reading the Book of Proverbs to Sam wasn't by chance but instead had divine intervention.  Sam sitting quietly was my first clue, and when he said "Ummm...Mom, my sins washed" and he used his hands to show me away.  I repeated what he said and he said "Yes, Mom" and I cried.  Sam struggles with listening, auditory input, processing and he would normally repeat what he has heard but what I was reading was not about sins being washed away.  Sam saying that particular phrase was a complete, solid and pertinent thought and expression that definitely comes from the book I was reading but the thought process of pulling something like that out of a brain that struggles with aphasia and apraxia is miraculous in it's own rite.

My Dad called to tell me that Mom's peace lily that hasn't bloomed in years has 10 flowers on it. You're good Mom!  I know she is with me but I still miss her voice, her smile and her laugh each and every day. I hope she smiles as I pick up Dad each Saturday to attend church and go out to dinner. I hope she smiles as she sees me blogging again. I hope she smiles when Sam's external fixator finally comes off and he walks again. I hope she smiles when Wendy and I plant all her flowers this spring. Keep guiding me Mom, you always said "We can do anything we put our minds to" but remember sometimes I need a push. In your honor...Wendy, Martha and I will wear a necklace of hearts with your big golden heart in the middle and the necklace's inscription will remind us that:

"The love between a Mother and a Daughter knows no distance".