She Runs A Good Race

mothering is a marathon

Ryan’s Birth Story (Part 3)

on April 11, 2012


5 weeks old

THE phone call

Dr. Flores’ words

Chris took call

Results were positive

Prader-Willi syndrome

A lifelong disability

Life-threatening illness

Scoop up Ryan

Hold my baby

Cry many cries

Chris and me

Bonded so closely

A new journey

A new family

Luke, Luke, Luke

How to cope

What is next?

PWCF Director calls

A mentor mom

A support group

Appointment with expert

Appointment with geneticist

Appointment with urologist

Specialists, specialists, specialists

Growth Hormone Therapy

Shots every night

New OT Sara

New PT Rosemary

Therapists every day

Lots of exercises

Get stronger Ryan

Wake up mouth

Wake up body

Please wake up

I will never forget the night our pediatrician called to tell us THE NEWS. We had been home with Ryan for a week or so. The phone rang and the caller ID told us it was the doctor. The answer. The future.

Chris told me when he hung up with sad, soulful eyes, “It’s a YES.”

I ran to our bedroom where Ryan was sleeping peacefully on our bed, and quickly scooped him up in my arms.  I said,” I will take care of you, I will take care of you…” Over and over I said it as the tears fell onto his baby blue sleeper.

Chris immediately called and left a message with the PWSA (USA), the national organization based in Florida for Prader-Willi syndrome. We received a phone call back the very next day from Lisa, my new “mentor mom,” from the Prader-Willi California Foundation (PWCF).

Her message to us was, “Congratulations on the birth of your new son, Ryan.”  She did not say, “Oh, I’m so sorry about your son and please call me back.” There was warmth and help and support waiting in the wings for us. We soon found out that Lisa lived 10 minutes away from our home.  This was one of many signs that God was taking of us in the midst of this unthinkable crisis.

When I was finally brave enough and strong enough to read about PWS, this is what I read:

  • rare genetic disorder, a spectrum disorder
  • occurs in 1 to 12,00 to 15,000
  • chromosome 15 affected
  • lifelong, life-threatening illness
  • symptoms include hyperphagia/excessive eating (WHAT?)
  • behavior issues
  • social issues
  • medical issues
  • parents and caregivers experience some of the highest levels of stress
If my emotions were in complete charge, they would have screamed,”How is a mother supposed to deal with the fact that her precious baby is destined to become morbidly obese, mentally-challenged, lonely, and die early?!!!!”
But thankfully, by the grace of God, and a supportive, wise husband, my emotions did not get the best of me.  Together, Chris and I went into high gear to do all that we could and should for Ryan.

The specialist appointments began. Endocrinologist. Geneticist. Urologist. Pulmonologist. A new OT started coming to our house, another ANGEL, named Sara.  A new PT (physical therapist) started coming when Ryan was two months old.

Ryan began receiving growth hormone (GH) nightly when he was 10 weeks of age. We had to give him a shot EVERY NIGHT (and for the rest of his life) to help him gain lean muscle mass, become taller, and help increase his body’s growth hormone levels. (Can you imagine how thick-skinned again we had to become to deliver shots to Ryan’s little body…every night?!)

And so our new and unique journey began…

We were “special needs parents.” We had a son with “special needs.” An entire new world just opened up for us.  We were about to meet some amazing families in the PWS world and the special needs world at large.

We humbly told all our family and friends about Ryan’s diagnosis.  From the start, we embraced our new life with Ryan, adopted a very open attitude, and shared our story freely.  We told ourselves, “We are not going to shy away, pretend it does not exist, or alienate others from helping us/supporting us/loving on us, by keeping it a secret to ourselves.”

We accepted quickly that we would need help, lots of help, throughout our journey with Ryan and Prader-Willi syndrome. We were bonded together, we had our faith and family, we could confidently take baby step after baby step. And we did. We still do.

6 responses to “Ryan’s Birth Story (Part 3)

  1. Liz says:

    I read this with tears in my eyes… Remembering when we found out “something” was wrong with our little girl. As you say life is forever changed… But I am lucky to have her ,as you are to have Ryan… They are gifts to remind us of what is truly important in life… Love, family, friendship, Faith… Things we tend to forget sometimes in the quest for other “goals”. I love your writing my friend… That too is a true gift. XOXO

  2. kristin says:

    I also have tears in my eyes as I write. You so succinctly expressed your feelings, so vividly recalled them with total truth. Ryan is a gift and so are you.

  3. Lisa says:

    What a beautiful story Jessica. Thank you for sharing.

  4. Tanya Monaghan says:

    You are an amazing mother Jess! I am humbled by your experience. I had no idea how difficult your journey as a mother has been. But Ryan (and all of your children) are so lucky to have you as a mother. Bless you!

  5. Diane says:

    Jessica, your style of writing is magical. Thank you for welcoming me into your story and journey. It’s hard to imagine the steps you’ve and your family have had to take thru the years and I so admire your strength. What a beautiful role model you are! And seeing Ryan in the. Orning is a highlight for me! I look forward to reading on…

  6. Tracy M says:

    Hello love, Thank you for sharing your family story. Life is such a roller coaster isn’t it? And for some, more than others. Peace darling girl, Tracy (the Aussie) xo

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