Stephen: Chapter 1

     This picture was taken literally moments before my life changed forever.  Stephen was still able to sit on his own, and in fact was fussing until we put him in his own chair.  We were at his neurologist's office waiting on the official diagnosis.  My sweet cherubic little boy...I was "hoping" it was muscular dystrophy.  That seemed like something I could "manage" for a long period of time.  Something I could handle for the rest of his life.  When the doctor said "Leukodystrophy", I looked at my mom to read her facial expression.  She told me she was sweating but she was crying.  She knew.  She knew that this diagnosis meant so many horrible things.  She knew we would be "robbed" of our little angel at some point in time.  Then the room fell quiet when I asked "So how long does he have?"  I held my breath hoping to hear "many years" but instead "Five years...total", was the answer the Dr. gave me.  Stephen was about to be 2 years old.  How do you act after that?  What can you say?  I was a zombie when we ate in the cafeteria that afternoon...so numb. 

     When he was born I counted his fingers and toes the way any mom does.  Perfect is the total I came up with.  He was a happy baby, loved being held, loved to play and go outside.  I had my apartment baby gated so he couldn't get hurt in the kitchen.  It broke my heart to have to undo all of the baby proofing once he lost his mobility.  The next thing to go was his language.  He had just worked his way up to a few words such as: "mom", "dada", "ow", "up", and "bah"....he cannot say any of these anymore.  I miss him saying "mom" the most.  He used to do the motions to "5 Little Monkeys Jumping on the Bed", now he just giggles as he recognizes the tune.  By the way, he does have the BEST giggle in the whole world!

     His swallowing was the next thing affected.  So we knew a feeding tube would come next.  That was the scariest decision to make at the time.  What a drastic procedure it seemed like but now I am so grateful we did it.  He now gets all the nutrients he needs, plus all his meds are accurately dispensed.  At the time Early Childhood Intervention (ECI) was providing us with PT, OT, Speech Therapy, and what I called play therapy.  I would have been so lost without ECI.  They were my source of strength and they loved my son like I loved my son.  Through all of these therapies I started to see a whole new side of my son...he is unbelievably tolerant and strong!  He would smile as his Nana would sing a made up song asking "where is Wei" (his Physical Therapist) and he would watch the door expecting him any minute.  What other kid would be excited to see a person who will at times cause them pain? 
     
     Stephen's head control started to weaken as his swallowing weakend (or vise versa, not really sure) so in therapy they really focus on making him work to hold his head up.  When ECI had evaluated him they said basically he was like a 5 month old due to his poor motor skills.  Socially though, he scored off the charts!    

     Now that Stephen is 3 he cannot receive ECI services so we have him enrolled at a different therapy center.  His therapists are all female and he has them wrapped around his perfect little fingers.  He will stand in his stander and work to hold his head up.  If a cute little girl is in the room too, UP pops his head!  He is a relentless flirt.  If one of his therapists leave the room, he tracks her with his eyes and will watch where she goes. 

  The latest most difficult task has been enrolling him in school and then following that up with pre-planning his funeral and putting together last minute details for our Make-A-Wish trip.  That may seem strange to most folks but to me, that's the way my life is.  That same week I had to go to the hospital due to having extreme stomach pains...it was "Irritable Bowel due to stress", What stress? (sarcasm). 


     Leukodystrophy is about quality of life for all of us involved in his life. We have come to learn to not "sweat the small stuff" and aside from his diagnosis IT IS ALL SMALL STUFF.  I try to "live in the moment" but it's not always easy.  Living in the moment boils down to simply putting one foot n front of the other on a day to day basis.  He usually wakes up at 7 am so that's when my day is off to a (usually fantastic) start.  We feed him his breakfast and do morning meds, watch TV, play, etc. just like a "normal" family would.  Simple tasks that I cannot take for granted any more.  I have learned that NOTHING is guaranteed.  From one day to the next I don't know what his mood or symptoms will be like.  One day he could be super happy and fun and the next day he could be having excruciating pains. 

     You may wonder what keeps me going...one word: STEPHEN.  His smile and laugh are two things I will go to any length to have. 
     Our next adventure will be later on this week, we will go to the hospital in Houston for Botox injections in his legs.  I will let you know more after that takes place. 
     I will leave you with this.  Here are some things you need to know about Stephen:

1. His laugh is infectious
2. He has the most beautiful smile (with dimples)
3. He LOVES body functions (burping, farting, sneezing, etc.)...they make him laugh
4. He likes to hang upside down off of our laps "Sloth baby". 
5. He is a RELENTLESS flirt...so if you are female, look out!