I needed to believe

I watched as his lips started to turn from a pale pink to a deep  purple.  My heart raced as fear began to rise up my throat, making me feel as though my own air was being cut off.  I knew this fear.  It was not new to me.  I had been down this road twice before. Five years prior with my eldest son Zach, who has been spared the  diagnosis of Muscular Dystrophy.  Then again 18 months ago with Josiah.  When he had caught influenza and pneumonia.  I felt so powerless, as we  waited for the ambulance.  Faster, I squeezed  the large ball attached to the mask I held over his face, that forced air into my baby.  Josiah"s big beautiful scared brown eyes stayed locked on me. His lips pursed slightly.  "Don't talk baby." I urged him.  "Just breath, help is almost here."

 I did not need a doctor to tell me what was happening.  Tears rolled down my face uncontrollably on the way to the hospital.  Josiah had aspirated on saliva. What I did not know was that one of the drugs he had been prescribed, for depression and OCD, side effects produced excess saliva.   Saliva in amounts to great for him to swallow safely.

In the ER I felt so small and utterly alone.  A mouse clinging to the side of his bed, begging for his life.  Watching through eyes blurred from tears,  I saw the numbers.   I stepped back as a crash team came running.  We were loosing Josiah.   I felt an arm around me  as one of the attendees tried to assure  me they were doing everything they could, and I  needed to let them do their job.  I wanted to hear the words he will be fine, but I saw the fear as I looked around the room.  And then my baby seized.  More staff came running ( stat).  I  took another step backwards.  His poor little body shook and then went stiff.  Another staff person  began asking me questions about his history if any with seizures, blood clots and his heart.

I stood there frozen feeling utterly alone, with pieces of me breaking. I watched his vitals plummet.   I needed to touch him.  To make sure he knew I was still here.  Most importantly I needed to call him back to me.  Seconds later they were whisking him off to scan for blood clots.  I was that small mouse again. Only this time  in a corner alone,  quivering in a wake of tears, begging God.

 Three  days after being admitted into the hospital his vitals began to crash a second time.  He  had another seizure, it took him two days to come out of.  I became lost in my fear that he might not be coming  home with me.  My fear was now accompanied with  anger.  Anger that my son was not getting better.  In  fact they were having a difficult time stabilizing him.  Along with that anger  a new sorrow had begun to grow with in me.  I knew the course of this disease.  I had watched it  savagely attack my three brothers through my childhood, until it claimed their lives.  Now  helplessly again, I watch my two youngest sons in the same  battle with  this merciless monster.  As a mom watching her  children in daily battle with a fatal disease, I also ardently pray, they do not  suffer this horrible fate longer because I am selfish and can't  let them  go.  Its a deep inner battle, I  struggle with, daily.   There will be some of you who  will not even come close to understanding this.

I stayed at Josiah's side for two weeks and three days during his stay in the hospital.  My fear felt so great, I at times trembled.  Fear from knowing, he will leave me far to early,  and there is nothing I can do about it, because that is the reality with  Duchenne Muscular Dystrophy.   It was a few days   after Josiah had crashed for the second time and had not yet showed to be making any improvements  that I saw him laying in bed  with his hands folded together across his chest.  I watched from across the room in silence.  A bit surprised he even had the strength to be  able to put his hands together.  Even on good days he often needed my assistance to move them.  Several minutes later he asked me to turn  him on his side.  As I  helped him I asked  what he was just doing with his hands together.  He said quite simply  "talking to God." I smiled at him.   And then THE question came.  "Mom am I going to die."  What was left of My heart broke.  For him and for me.  I  was so very scared and desperately wanted to hide my fear from him.  But as I looked at his beautiful face, I saw it. He had folded his hands.  There it was, an improvement, my sign.  It was then that  I saw "what" he needed from me.  I felt the tears fall.  I let them , it was useless to fight them.  What he needed  now from me, was  strength.    Strength that I BELIEVED he would recover and come home with me.

I wont lie and say I even pretend to  understand anything at  all on this journey.  The tears fall frequently and most days I am to scared to even exhale.  As for prayers its usually me yelling at the power upstairs. For those of you who gasp at that notion-Seriously he already knows who I am and what I  am going to do.  Its me who has to learn on this journey.  For the record I have to share I always add in "Please don't let me be selfish by asking  him to suffer more on earth, for me.  Give me the strength to let go when its time.'  In  those difficult days  at my sons side when I felt as useless as a scared mouse, I believe I was meant to be right where I was at the exact moment "he" intended.

Josiah lungs and heart are good and they did not find a blood clot.
But we do now finally have an explanation for his seizures.  So he   has been diagnosed with more complications from another condition that he will have to live with.  However he  made a complete recovery from aspirating.  We have the saliva issue under control.  He was released from the hospital after 17 days.     I embrace each day with my sons because for now his journey is not over.