A Letter of Love

 WARNING! Don’t read any further if you only wanted to hear about sunshine, love, and how the world would look better if only you could find where you hid that last chunk of mouth-watering chocolate.

You know, I thought I was doing good.  Things had kinda settled into a routine with my granddaughter Layla.  My daughter posted on FB today this amazing video of her laughing and laughing.  Even thinking of it right now brings a smile to my face.  If only you could hear her laugh.  She has this delicate little snort that accompanies a higher pitch giggle.  What makes it even more amazing, is that only 5 months ago this little angel lay lifeless in a hospital bed with tubes and needles poking everywhere and the only noise in the room was the beating of the IV machine as we tried to get nourishment into her little body. 

Layla in her hospital bed at 9 months

                              Attached to IV in head, heart monitors, and feeding tubes through nose
For thirty days and thirty nights I stood by her crib and slept by her bed.  I tried desperately not to show my tears in front of my daughter who was doing everything in her power to control the pain and devastation that seared her soul.  As her mother there were no words I could give and even my arms could bring no comfort.  All each of us could do was to just be there; joined by the love that we felt for this beautiful, imperfect child, that we loved with all our  hearts.                                                                                                                                                                                                                 

But that little girl amazed us.  Although the prognosis is no
different today (limited life expectancy) and no real diagnosis, our little girl is a mere shadow of the past.  With surgery, the doctors inserted a feeding tube and today she is 18 lbs. 7 more lbs than 5 months ago.  She can coo, and smile, and laugh. She can even focus better and although cortically blind, she can see much better than before.  Where she couldn’t lift a hand or hold you hand, today she can move her head from side to side and gently grasp your finger.  When you sing to her, she breaks out in a smile that melts your heart, and makes you never want to stop.  And last week her first tooth broke the surface!

This is the delivery of liquid food that Layla is fed through her feeding tube every 4 hours.  This should last one month

   Can she sit or hold her head up? No.  And until you realize how long she is, you probably assume she is a very beautiful 6-month old.  Does she require the care of someone trained in feeding tubes? Yes.  Does she need to be held more than other children? Yes.  Children with neurological deficits have more irritability, but they can be comforted, and my daughter spends her entire day and many nights making sure that Layla feels safe and loved and without pain. Does she require countless medical tests, numerous specialist, clinical trials, pokes, prods, scans, blood work, biopsy’s, ex-rays, mri’s, cat scan’s, EEG’s? Yes.

                                                                                         Layla's 4 year old cousin Liam is making her laugh
At the beginning of this story I mentioned anger. Although I could be angry at the disease itself… Why?  The answer really is…Why not? None of us deserves this.  And understanding why genetics’ goes wrong when there is no attributable cause, doesn’t leave us with as many questions as you might think.  But what does make me angry is what can be prevented.  It is the reactions of YOU.  Although we don’t, and the medical community still does not know her precise condition, there is one thing we are certain. For some reason, this beautiful, amazing bundle of love was given to our family. She was born.  She was not brought into this world through extraordinary measures, nor have we employed any of them to keep her alive.  So all we can rightly assume is that it is our job to love her.  To hold her when she is in pain. To sing to her, to rock her.

But YOU. Instead of acknowledging her presence and that it must be challenging to care for this little girl, you ignore her and her mother. You don't make eye contact. You don't stop and say hello.  Perhaps you are afraid of saying the wrong thing or you feel guilty when you hold your healthy child.  But when you cannot look my at my granddaughter for the gift of life that she is, and you awkwardly avoid my daughter, her mother, you magnify the loss that is already in our hearts.  Do you not think that we don’t realize that Layla is not “normal”? Do you think it never crosses our minds that she can’t lift her arms and place them around her mommy for comfort? We
know and  accept all of these things and therefore,
embrace the every little gift  and every precious moment
we are given.                                                 
                                                                        Above, Layla  lying beside her 3 month old cousin Adelyne

A first tooth poking through

In writing these words, my anger is abated.  I am left with only a pleading sadness.  I ask you for the sake of mothers like my daughter, that you put aside your discomfort and you find it within your heart to accept children like my granddaughter for the gift that they are today. Finally, I ask that you reach out to be a friend, and please offer words of welcome and kindness, to the mother who needs you more than you can ever imagine.

                             In Love….Layla’s grandmother (Gramma Jamma)

 Halloween and Jamma  dressed me up like a cute strawberry

 

 Daddy, Mommy and Layla

 

                                        Mommy Makes Layla Smile like no one else can!!!!!!

 

Grandma Jamma and Layla ...I love this little girl!

 

If you want to read  my daughter Kaiti, Layla's moms Blog of her Journey go to http://nightbeautylayla.blogspot.ca/