Friday, May 04, 2012

Special Needs Spotlight: Deakon





*sigh--I don't know why the font is going wonky, with a smaller size and different colors...please read on and know I'm aware but unable to change these annoying details.  

I am Jenny, married to a wonderful, loving father, and mother to two children. My daughter, Abby is 9 and so much fun.  She loves cheerleading, school and out-smarting her mother in every single way!  My son, Deakon, is turning 6 in two weeks.  He loves his Ipad, Yo Gabba Gabba, doing flips and eating cheeseburgers.  Deakon was born with an extremely rare chromosomal abnormality, Ring 18.  To summize, on his 18th pair of chromosomes, the first strand is "normal" and the second strand has some broken tips and is shaped like a circle.  There are less than 100 medically documented cases, though I suspect there are a few more.  Due to the rareness of his condition, we get to travel his Ring 18 road, often paving the way uncharted. This has left us with quite an adventure, which we (mostly) would not change (ask me on a good day:).

On a personal level, I love to go to school, so much so that I didn't leave for long!  I received a Masters Degree in Psychology about 9 years ago and have worked with kids "at-risk" ever since.  Currently, I work in an elementary school as a counselor, and I love it.

I also really like trashy reality tv shows, diet coke, and pretty much anything that contains sugar.

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Miggy:  Can you take me back to the day Deakon was diagnosed with Ring 18?  Do you remember how you felt?  Can you compare those first thoughts and feelings with how you feel now? 

Jenny:  It was a blizzard that morning Blair and I drove to the perionatologist's office. I was about 22 weeks along and had just started to really show my pregnancy.  We had to wait for quite a while, and were finally lead to a room.  The doctor was a woman, which was somewhat comforting...until she spoke.  There was nearly nothing said for a long time. She conducted the ultrasound very methodically and would occasionally point out, "Oh yes...there is a flat bridge of his nose" and "I don't think he has five toes" and "See, his forehead...it is flat" and "He has a protruding lip...right there" as she pointed to the pieces of his body.
His beautiful, perfect body.
But, it was clear she did not see beauty.
After glancing at his heart and brain and finding no significant abnormalities she then wiped the jelly off my stomach and began her speech.

"It is my strong recommendation that you abort this fetus."
Not...baby, child, infant...fetus.
"The laws are kind-of tricky in Utah, but I can get around them."
I remember just sobbing and asking repeatedly "Why? Why should I abort him?"
Her reply was not matched with gentle looks or tender gestures, just a scientific "Well...he will die anyway. Most likely in utero, or soon after birth. If he lives, he will be profoundly retarded and have no quality of life.  You will most likely not be able to have future children as well.  Don't you want another child?"

As if I didn't want this one.
As if I cared at all about his nose, or toes, or forehead or lip.

I turned to Blair and said, "No. I am not aborting him. I am keeping him."
Blair's eyes were welled with tears and he confirmed the decision.

The doctor, rather disgustedly, then asked if she could do an amnio. I agreed and she scheduled a time to do it later in the afternoon. In the interim, she sent Blair and me to see a genetic counselor. I don't remember much of her nonsense, other than some bull crap about how I should "Go home and hug the daughter I had."
Really? Grief 101 says NEVER compare the dying to the living.
If I hadn't been in such an out of body, emotional state, I would've schooled her.

The car ride home was nearly silent. It was bumper to bumper the entire way due to the storm, which in hindsight was a beautiful gift. It gave me a little time to come down from the cloud I was floating on and into reality.  I needed reality before I could greet my very alive and perceptive three-year-old Abby.

The next three weeks were a living nightmare. I woke up each morning and pushed and pushed until I could get Deakon to move.  I truly never dared to fall asleep for fear it would be the last time I could feel him. I refused to wear maternity clothes...they were just a stark reminder of what was not going to happen for me.  Boxes of baby clothes I had ordered online were delivered and carefully stuffed away inside closets by my sister.  I remembering showering each morning and planning his funeral; the announcements, the blankets (which I wanted to make), the songs.
Raw grief is never pretty.

Then, one day, I woke up.
I woke up and made a choice.
A conscious choice to have hope.
A conscious choice to fully live the time I had with my sweet boy.

I woke up, and I got to work on being happy.
And, although I have "moments", I have not looked back.  Period.




Miggy:  Explain how your child’s specific special need affects your day-to-day life?  

Jenny:  It’s funny to think about this, because my “normal” has slowly become just that…normal.  At the moment, my almost 6 year old boy is getting very big.  He weighs over 40 lbs., and is strong enough to wiggle out of pretty much any hold.  Because Deakon is not independently walking for long periods of time yet, he needs to be lifted and carried many places; inside the car, the tub, the grocery cart (which he is too large for), the swings, the stroller, his high-chair, etc.  Even the simplest of tasks now require me to hunch my little frame down, use whatever I have in leg strength and support myself, while supporting his body weight.  It can be exhausting, and sometimes depressing. Because, quite frankly there are times when I just do not have the physical strength required to bathe or lift him.  Every single outing has to be planned, and now a lot of the time, requires assistance. It is difficult even admitting that inside this forum, because I’d like to believe I can care for my own son all by myself.  I’m trying to get better at recognizing my limitations and asking for help when I need it. Though, the neighbors who saw me attempt and successfully lift him onto his school bus while wearing a black pencil skirt and two inch heels last week might beg to differ!

Deak is also pretty non-verbal.  His receptive language skills are leaps and bounds above his expressive.  We are blessed he understands much of what we say to him, but it can be frustrating for him when we cannot understand what he is trying to tell us. We play several different versions of “20 Questions” in our home on a continual basis.


Miggy:  What are the biggest worries you face for Deakon?
           
Jenny:  My worries for Deakon have changed significantly from his birth until now.  I grieved the loss of the little boy playing baseball and breaking hearts for several years before I recognized the peace that would eventually come with the closure of that dream.  When Deakon was two, I was talking to a close friend who has a son with Down Syndrome.  We were talking about mainstreaming in school and the expectations I had for Deak when he became a Kindergartner.  She listened and wisely said, “My only care for my son now is that he is happy.  Wherever he is, if he is happy, that is what matters to me.”
It took me another year or so to understand the wisdom in her statement, as I was so perseverated on Deakon meeting normal expectations.  I get it now.  So, to answer, my biggest worry for Deakon is that he may be placed in situations where he is not happy, and I do not find out for a while due to his non-verbal language skills.  I have to trust the people who care for him; I would lose my sanity if I didn’t.  I also worry about his ability to withstand pain.  Deak has been through horrendously painful experiences, which have been heart-breaking for me to watch.  I wish I could feel his pain for him.


Miggy:  Now for a lighter question, have you ever had any funny conversations/moments you never imagined due to your special needs situations? 

Jenny:  I recently dropped a gift off at the same friend’s house that has a son with Down Syndrome.  When she came to the door, she said to her son, “Come on, stop licking the windows.”  I didn’t pay any attention to the statement, as I often have to tell my Deak to “Stop licking…”  A minute or so went by and we laughed together about the strange things we find normal.

Along those same lines, last week my daughter left her finished homework lying on couch while she went to grab a drink.  Within seconds of her departure, Deak spotted the homework, hopped over to the couch, grabbed it and attempted to shove it into his mouth.  Abby quickly ran to him, grabbed it and said, “I almost just really had to tell my teacher that my brother ATE my homework.”  We laughed pretty hard for a while.


Miggy:  How can people best approach or respond to your child? Is there something you wish other people knew so as to avoid awkward or hurtful situations? 

Jenny:  When I muster up the energy to take my children on outings, to the pool or to the park, I’d love it if people really just treat me the same way they treat any other parent.  Oftentimes, well-meaning strangers will approach me in public and begin telling me about their “cousin, best-friends’ daughter, next-door neighbor” who has “… syndrome” and assume I will want to recount war stories for the next 20-30 minutes.  Sometimes, this is okay…but, most of the time, I’d just like to enjoy the outing I am having with my children.  I’ve found myself questioning why I ever attempt to do “normal” things when I am oft reminded of how abnormal my life is.  I’d love it if people would introduce themselves, smile, ask my children’s names and then chit-chat with me about American Idol or The Real Housewives.  I’d love meaningless conversation.  :)


Miggy:  Tell us something you love about Deakon.  A special story, a personality trait or just something others might not know.

Jenny:  Deakon wakes up every single morning with a smile on his face…quite literally.  His dad or I open his door, ask if he is up, and we are inevitably greeted by bouncy legs and repetitive hand-clapping (signifying his desire to get out of his bed).  He cuddles up against our bodies, laughs out loud and promptly asks for his ipad and chocolate milk (who doesn’t love that combo in the morning?).  Every single morning I am reminded how lucky I am to be the mother of a little person who is the embodiment of pure joy.  Deak also is extremely proficient at using his ipad, which was a gift from his Grandparents last year.  It was bought with the hopes of it one day becoming a tool for communication, but has quickly become a sanity saving staple.  If our television is turned onto Yo Gabba Gabba or Dora the Explorer, Deakon will find (sometimes the exact episode) on YouTube and watch it at the same time.  I don’t have any idea how he has taught himself all the tricks, but he has an uncanny ability to spot an ipad anywhere (church, parks, school) and quickly take it over.  




Miggy:  What is the biggest lesson you’ve learned since becoming a special needs mom?   

Jenny:  I often state this, but quite simply, I’ve learned the power of hope.  My definition of hope is not fueled via ideological and unrealistic dreams; it is defined by the quiet whispering as I struggle to go to sleep that says, “You are okay, and tomorrow will be okay too.”  I find strength in hoping that there is a purpose, beyond my daily comprehension, in Deak’s pain.  I have hope that at the end of this journey, I will understand.  I may wax and wane in faith, depending on the amount of strength the day has required, but the hope always stays intact. Deakon is proof that this life’s mission is to live again in a state more glorious than I can imagine.

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Jenny, thank you so much for sharing your story and your sweet little Deakon with us.  I loved reading this interview, as your candor and humor really come through.  And really love your last paragraph about hope... I don't even want to try and paraphrase, it was just really well said.  And something we can all relate to, special needs or not.  

As always, if you or someone you know would like to participate in the special needs spotlight series please email me at thislittlemiggy at gmail dot com.  

Have a great weekend!


8 comments:

  1. Beautiful. I love your definition of hope and will refer to it often from now on. I loved meeting your adorable little Deakon and think he seems like a terrific kid. You are a strong and wise family and I'm glad you shared your story.

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  2. i also love her definition of hope. thank you for organizing this miggy.

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  3. I always look forward to the spotlights on Fridays. This is a really detailed one about how Jenny and her husband found out about Deakon's diagnosis. I'm always disappointed when I hear about how the typical response to a "not-perfect" child (YES! A CHILD, not fetus!) is to encourage a mother to terminate her pregnancy. This special needs community really needs to educate the perinatal community about how to handle these delicate situations.
    Jenny, Deakon is blessed to have you as you are blessed to have him. Keep your hope! It shines for all to see/read!

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  4. Loved reading about this! My little guy has full trisomy 18 and I hadn't heard of a kiddo with 18 ring, although a friend of mine has a little boy with 13 ring. I'm so sorry about how she was treated by the perinatologist. I was so blessed to have one who gave us information and support and helped us the best she could. Thanks for sharing!

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  5. I would love to have an email for thus mom and give her some info about how my child is using her iPad as a communication device!!

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  6. Your story is beautiful. Your family is beautiful. Thank you for sharing!

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  7. Thank you everyone:) My email is jehowe3@gmail.com, and I'd love to hear from you!

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  8. It is truly amazing how your hope can change the whole perspective of something. Deakon definitely understands the true purpose of live, to find happiness and joy.

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