Thursday, April 23, 2015

MOMMY, BOBBY, & MAGGIE

Raising and loving a child with disabilities has been a blessing within my life as a Mom.

When Liam was born we thought him to be a healthy little guy, but soon found out that he had much weighing against him in his near future.


By a month old he was diagnosed with 22Q deletion.  It's a genetic syndrome that comes with many kinds of symptoms.  Children suffering from this disorder can have extreme heart problems, with many having more then one open heart surgery by the time they are 3.  Lots of children have a short life span due to the many complications that occurs when you are missing parts of your 22nd chromosome.  On the low spectrum, a child can just have poor eyesight; causing them to wear glasses at an early age.  The gap can be wide when analyzing the severity of the syndrome.

We were told Liam was missing 1.6 million pieces of his chromosome.  His case was on the severe end.  Our first inclination that something was wrong started when he acquired pneumonia at 3wks old.  We soon learned during a lengthy hospital stay that he also had a hole in his heart, hole in his left lung, severe aspiration difficulties, tracheomalacia, gerd, high oral palate, a deformed spine, and a cranial facial disorder that caused his skull to fuse together too quickly.  At 3 wks, he was placed on oxygen and had surgery for the placement of a g-tube so he could eat without the expense of aspirating. 

Our living room quickly became a hospital, and we became Doctors, nurses, therapists, dietitians, and medical equipment specialists all in the matter of days.

As Liam has grown, God has been gracious.  He has healed and removed many of Liam's problems and his symptoms have faded into the backdrop.  As most things that ailed him have become only memories, one still continues to hang on without mercy.

When Liam had his feeding tube removed only a year ago, he had no oral motor skills.  This means he never picked up cheerios and ate them at the table or had snacks in the car.  He never had a Popsicle or jello, or even water touch his lips for over 2 years and so he missed out on many things.  And so did we...

We never heard Liam say Mommy or Daddy, he never asked for a sippy cup or bottle, or said common first words like milk, bye bye, night night, or love you. He would grunt and make sounds but never anything consistent.  If he needed something he would whine or cry.  He had no concept of tongue placement or blowing raspberries to play with sound.  He was very sensitive about his mouth and took months and months for us to just be able to touch his face with a toothbrush, without even daring to actually brush his teeth.  We communicated mostly through sign language and his speech just continued to delay.

Life for Liam was harder then it is for some children yet he always tried so hard.



After several years now of speech therapy and other resources, we have made solid progress.  This last week, at 3 1/2 yrs old, he said my name..."Mommy."  With all consonants and vowel sounds in place, the proper way and in perfect context!  I have been waiting for so long to hear that.  My name, my title and association with him finally was made verbal.

"Yes, Liam...I'm Mommy." (said with emphasis on the "m" sound)  I said back to him with a smile.

For many months Liam has struggled with getting all the sounds to "fit" in a word.  So many times a word will be missing the first sounds or last..very seldom have we ever heard a solid correct pronunciation.  I have been "Bobby" to him for awhile now and although it was cute to hear, I longed to hear him say it correctly. 

I spent the day thinking about Liam's life so far and  how regardless of  the difficult tasks he's faced; he still continues to overcome.  We have watched God take His time with Liam, reminding us of how some miracles don't happen in an instant.  Some require time, development, skill, and character.  Some happen so gradually you don't see progress until one day you stumble across something that pivots you back into time..then you remember.  Sometimes, they happen in a moment, sometimes they don't.  All of the time...it is God.

Every good gift comes from above.
I ponder on this as I tuck my kids into bed...First, Ilana with her BIG Nana hugs!!  Then Liam, who gives me a long repetitious "mommy, mommy, mommy" as I come into the room.  A nice smooch and he's all tucked in.  Then Abel, whose first words are slipping off his tongue as I stand at his crib, "Nigh Nigh," aw... my heart just sings!!

"Night Night Abel, Bless you in Jesus name."

As I shut off the light I hear, "Nigh Nigh Maggie."



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