Costello Syndrome, Embracing A Feeding Tube and Celebrating The Smallest Of Victories: Rebekah’s Story.

6 Posted by - July 9, 2015 - Birth, Bottle-Feeding, Breast Feeding, Differently-Abled Bodies, Family, Motherhood
Rebekah & Family by Jade Beall

Rebekah & Family by Jade Beall

Rebekah: We say that we have no expectations for our children.  We say they can be whoever they want be and grow in their own time.  We say that.  We may even believe we mean that.  But not so deeply hidden in our hearts are real, unvoiced, assumed expectations.  We expect that our children will be able to eat, to crawl, to walk, to speak, to interact, to be healthy, to outlive us.  We expect childhood to be a journey of embracing growth and experiencing joy.

With the birth of our daughter, Makenzie, our most basic of expectations were shattered.  The first to go was my dream of a homebirth like we so easily had with her older brother.  Gone was the idea that this little life would slip into the existing rhythm of our family.  Born early and with many complications, the first month of her life was spent in the hospital.  From there everything snowballed.  Life was out of control.  Our daughter could not nurse, she could not breathe without making a terrible rasping sound, she could not gain weight, and all I could do was hold her tiny body while she screamed in what seemed to be constant discomfort- a discomfort I could do nothing to alleviate. I expected that, as her mother, I would be able to provide her comfort, to calm her, to nurture her.  Nothing I did silenced her screams, helped her gain weight, or quieted that grating sound of strained breathing.  I felt like a failure.   Joy was the most elusive expectation of all.

Rebekah by Jade Beall

Rebekah by Jade Beall

Rebekah & Family by Jade Beall

Rebekah & Family by Jade Beall

Rebekah & Family by Jade Beall

Rebekah & Family by Jade Beall

Three months into her life, we heard two words that would redefine our journey.  Costello Syndrome.   It was like hitting a wall.  It did not just stop us; it knocked us down completely.  For months that wall literally loomed over us.  I was in pain.  I watched my husband in pain.  And worst of all, I continued to watch our daughter struggle.  In a daze, I navigated feeding tubes, doctor’s appointments, MRI’s, and cancer screens. I checked each item off the list, but in my broken heart I knew we were going nowhere.  We were stuck behind that wall.  Then, at 10 months, we almost lost Makenzie.  I watched my husband perform CPR, saving her life.  In that darkest moment, I vowed to search for a door in what I thought was that impenetrable wall.

Rebekah & Family by Jade Beall

Rebekah & Family by Jade Beall

Rebekah & Family by Jade Beall

Rebekah & Family by Jade Beall

Rebekah & Family by Jade BeallIt turns out I had to build my own door.  Then I had to actually open it before I could choose to walk through it in order to see what was on the other side.  I learned to shift my perception.  In doing so, I learned that Costello Syndrome is a diagnosis, not the definition of my daughter, nor does it define the boundaries of my family.  In shifting my perception, I saw that the feeding tube that I so did not want and worked so hard to avoid, was the key to Makenzie’s weight gain. That weight gain became essential to daring to believe my daughter could do more than just live, that she could actually thrive.  We learned to celebrate the smallest of victories: first smile at 9 months, finally reaching 10 lbs at one year, sitting independently at 20 months.   Now it is those celebrations that are snowballing.

Rebekah & Family by Jade Beall

Rebekah & Family by Jade Beall

Rebekah & Family by Jade Beall

Rebekah & Family by Jade Beall

Rebekah & Family by Jade Beall

Rebekah & Family by Jade Beall

Sometimes I turn around and look back at that wall I once believed was so daunting.  I cannot believe how far we have come.  Along the way I have made a choice to let go of expectations. Instead I cheer on what is and dare to hope for what may possibly be. My heart was broken.  But that breaking opened my heart so wide and deep that I found more capacity to love then I ever knew possible.  Costello Syndrome bulldozed its own path into my family.  Though much is unknown in what lies ahead, I know now that Makenzie’s life is a miracle we get to witness.  Daily I draw strength from her indomitable courage.  I choose to live with joy every day.  I choose to love my family. I choose to celebrate my daughter.

Rebekah & Family by Jade Beall

Rebekah & Family by Jade Beall

Rebekah & Family by Jade Beall

Rebekah & Family by Jade Beall

Rebekah & Family by Jade Beall

Rebekah & Family by Jade Beall

2 Comments

  • Lou July 10, 2015 - 8:42 am Reply

    Breathtaking. A lesson we can all learn.

  • Phil July 11, 2015 - 6:28 am Reply

    That was very beautiful. I deeply appreciate your appreciation without ever having to wear the chains of your weight. Humanity. Human is the best word to describe the relation between me and your blog. Motherly. A mothers love is all that can describe the depth of your blog

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