Meet Caitlyn Kennedy-Rebecca

Today, I would like to introduce you to the single most IMPORTANT and IRREPLACEABLE person in my life.  That would be my first-born daughter.

*Caitlyn Kennedy-Rebecca*

*Recent-Age 5*

Caitlyn, or Caity as I call her, came into my life when I was only 19 years old, however, she changed my life in more ways than I ever in my wildest dreams, imagined.  I simply had no choice but to grow up over night when she was born! You'll learn why.

Our story is a special one, because my sweet & precious Caity is special needs. She is both mentally & physically incapacitated.   For those of you who aren't familiar with the term incapacitated, it simply means that my daughter is entirely dependent on me, as she has no abilities, physical, or mental and is permanently disabled.

My pregnancy was an odd one. I had to go to the doctor all of the time because Caitlyn didn't ever seem to move. This concerned me!  Her doctor gave me extra ultrasound appointments and all sonograms came back fine. They just said to me, "Baby sleeps when you sleep, you sleep when she sleeps!" Truth is, I would stay up for days to try to catch her awake. It didn't happen. She simply never moved much.  Hindsight is 20-20 here and I wish somebody would have prepared me for the life that was about to change mine!!!

*September 25, 2006-10 days overdue*

And since my husband just joined the Army, and was about to be sent to Basic Training right after Caity's birth, we decided to get married in Miami when I was 38 weeks pregnant in our street clothes. Spur of the moment decision, but one of the best ones ever! <3

*Eloped Sept. 8, 2006*

I gave birth to my miracle baby on Tuesday October 3, 2006 at 6:59 pm. She weighed a nice 7lbs 12 oz. My life before her, means nothing now. In fact, the person I was before the moment she was born is forever gone.  She bewitched me!

*Friends visiting us in the hospital.*

*My 1st baby!!*

*On way home from hospital*

*1st Night Home*

* First Family Photo-right before Daddy left for Boot Camp*

Now before I get into the seriousness of my daughter's story, I need to share a little back history.

***In H.S. I was a super-snob.  I was really popular, and I got away with EVERYTHING, because everybody  loved me, and listened to me. Even the people who didn't like me, listened to me. I ran the school's yearbook for 3 years, and I was in every club, and held officer positions in most extras... and I worked at the diner across the street from my school, so if you weren't familiar with me in school, then chances are, you knew me from me being your waitress.

Well, there was this one girl who I was friends with who had a disability, and one day while I was working after school, some friends of mine came in the diner to tell me that this girl who I thought was my friend wrote something about me behind my back in a note, and I read it.  I got ticked, so I then started to make fun of her, and write bad things about her in a notebook I shared with some other friends... that we called a "slam book".  Thing is, I didn't make fun of this girl for what she wrote about me...I made fun of her disability.  I was cruel.   I didn't forget about it, but it never really occurred to me that it would get back to her and hurt her feelings. ***

Anyways, fast forward to October 3, 2006.  A child's BIRTH day should always be the best day ever.  But not for me. That joy was ripped from me!  I mean, the child-birthing experience as a whole, was nothing like I expected. It was wayyy worse!!  I delivered my daughter in a hospital that allowed STUDENTS to come watch me deliver.  I was not expecting that. In fact, it made me nauseous, and really nervous! This very private moment was no longer mine! It was a moment I shared with like 25 people total!  Ahhhh!!

Caity didn't want to come out on her own.  I carried her to 42 weeks and 5 days, before my OB would induce me.  I was induced with Pitocin.  Contractions were so awful. It felt like the sound of thunder ripping through the sky every single time one came. I was afraid I was going to be one of those mothers to die during child birth!!   Anyways, after 4 hours of labor, two failed epidurals and the infamous burning ring of fire... Caitlyn arrived, but not breathing.  My husband cut her cord, there was a quick cry! I got to hold her for less than 30 seconds, long enough for a photograph or two & then she was wisked away from me and sent to the NICU.  She swallowed some fluid which had meconium in it.  I thought it was routine.  I was given some drugs for my pain, and allowed to recover...sleep.

They kept Caitlyn from me for 8 hours, and before they returned her to me, all I was told right away was..."There is uhh...something wrong with your baby."     And... instantly... tears streamed down my face.  I couldn't even spit out questions. I just started bawling. All of the work of carrying a child inside of me for 10 months & spending 4 hours in labor, & the next 8 hours away from my baby and all you can tell me is something is wrong with her!!! I couldn't stop bawling. When the nurse finally handed her to me, I looked at her. All I saw was beauty.  She had black curly hair, blue eyes. Cute pouty smile. She looked so sweet and perfect to me. So what was wrong??  Then the nurse started listing things... She had breathing problems, hand contractures, hammer toes, an upper lip that was tepee shaped with a scar from what was believed to be a healed cleft in utero... and worst of all, they told me Caity was blind.

That was the worst day of my life. :(

A specialist came in and talked to me the next day and eased my worries. Caity would get hand splints soon & begin therapy. Life would be okay. It won't be easy, but it will be okay & I would get help along the way. Well... that was only the beginning of a long and rough road. But nonetheless, a road that has been the most incredibly challenging learning experience.

*Caity's 1st attempt at babyfood-Apricots!*

Some time passed, and one day when I was feeling particularly guilty & found myself praying silently over Caity as she slept, and I repeatedly asked GOD, "Why? Did I do something wrong? Is this my fault? Why choose her? Why choose me?"   And my answer came.  I remembered the girl I made fun of in H.S.  I remembered how mean I was. I then put my guilt aside and contacted her and offered the most heartfelt and sincere apology of my life.  She told me she had a long time ago already forgave me. Also informed me that I did hurt her,but was not the first nor the last person to ever do so.  What a relief on my part, but my heart broke for her. I pray for her daily and she to this day does not know that I do!   I do this because I came to the realization though, that I was a judgmental and spoiled rotten person just a year prior to having Caity. Not that me judging my friend had anything to do with Caity's health, but to me, it was GOD giving me a fresh start at life, in a new and more mature way! And now I was the proud mother of a special baby and nothing was to be easy for her in life, and that I was going to be not just her mother, and caregiver, but her protector, and a person who encourages others to live life by the golden rule.  I will for the rest of my life... never critically, or intentionally judge another person with hate or spite in my heart, and esp. not an individual with a handicap. And I was going to do my best to never let anybody do that to my Caity.  And to my friend, I wish I could tell you how much you have changed my life, unintentionally. I learned a really big life lesson at your expense.... you don't even know it!! <3

*Caity & Mommy Forever!*

Now... to the technical stuff.

Caity has so many disorders. Her medical history is really in depth. She will be 6 years old in a little over a month.  6 beautiful years I have had with her.  And to think they only gave her 4 years to live. I have been so grateful for her beautiful life.  I have tried to better her life by giving her siblings. (This also gave me a sense of "normalcy" with parenthood, having other children who are healthy by all definitions.)   I take Caity to therapy every week.  She has been in Speech Therapy, Physical Therapy, Occupational Therapy, Early Childhood Intervention, etc.  Nothing seems to work for her.  We consistently keep her in Physical Therapy because it keeps her body from going super stiff.  Strengthens her muscles a little bit, and encourages head control, and some use of her hands. Caitlyn has had some great therapists over the years, and her current one, Leah, is our favorite! Leah does a good job with Caity and I am so thankful for her patience & understanding of Caity's complicated medical history.

*Caity started therapy as a baby.*

*Medical Illustration*

*Caity in a stander this year!*

*She works hard in therapy!*

*Plays harder! :)  This is recent!*

Caity's DX's are as follows:

  • Neuronal Migration Disorder:  Periventricular Nodular Heterotopia with overlying Polymicrogyria
  • Anomaly of the brain, spinal cord, nervous system
  • Lissencephaly
  • Aicardi Syndrome
  • Cortical Blindness
  • Quadriplegic Cerebral Palsy
  • Muscular Dystrophy
  • Developmental Hip Dysplasia
  • Scoliosis
  • Delayed Skeletal Maturity
  • Intractable Epilepsy
  • Autism
  • Organic Sleep Disorder/Sleep Apnea
  • Hand, Elbow, Knee Contractures
  • Hypotonicity
  • Precocious Adrenarche (Pubic Hair)
  • Chronic GERDS
  • Esophageal Reflux 
  • Laryngomalacia
  • Congenital Trachealmalacia
  • Hearing Loss
  • Vitamin Deficiency
  • Mixed-Receptive Language Developmental Disorder
  • Severely Delayed Milestones
  • Failure to Thrive
Caity has had +9 surgeries to date including 3 Gastrointestinal Surgeries, Supraglottoplasty, 2 Adenoidectomies, Stomach Biopsy, Vagal Nerve Stimulator Implant (VNS) & Gastronomy (G-Tube Mickey PEG).

Caity will have to be on rx anti-convulsants for the rest of her life as she has seizures almost daily, (spasms) and Grand Mal seizures about every 3 days.  :(

Caity has lots of special adaptive equipment including a special carseat, a wheelchair, a special bath chair, a Versa Form positioner pillow, a special hospital bed, and some tumble forms for home therapy. 

*Caity was diagnosed with Epilepsy at 2 months old*

*We spent our 1st Christmas together in the hospital because of Caity's seizures.*

*This is what it looks like when she has seizures.*

*She hates getting EEGs done.*

*Leads on her head*

*Waiting for her to wake up after her very 1st surgery, anxiously!!*

*All of her nurses love her!*

*Bolus feeding Caity through her gtube.*

*Caity's 2nd Surgery was to implant this VNS in her chest, to help stop her seisures.*

*Post VNS surgery. You can see & feel VNS in her neck/chest.*

*Recovery time is hard.*

*Caity after one of her surgeries.*

*Post-Supraglottoplasty surgery.*

*Post-surgery smiles are the biggest relief of my life!*

*Caity in her Rifton bath seat*

*Caity in her Bingo wheelchair & in her arm splints.*

Today, Caity's life is calm. Nothing too exciting going on. But next month starts some new big things for her!  Hopefully when we visit her orthopedic doctor, he will have news for us!  We are also going to start botox injections in Caity's wrists.  I am scared, but I know at this age in her life, anything suggested for her, is in her best interest.

Oh, and in case you are wondering how I deal with all of this... I just take it one day at a time. Since I am being totally honest here, the thing I long for the most is hearing her talk. She does not speak or communicate in any other way other than with tears or smiles.   I may never get to hear her say Momma, but I dream of it. I imagine her voice being soft and dainty. :)  /sigh.  I live for Caity. I have two other daughters who I love dearly & that are important to me as well, but Caity is my number one, despite how unfair that comes across.  I love being her Mommy. I will always champion for her cause, support her, & I will always be right there in Caity's corner.

*Giving Caity little sisters has multiplied my joy!*

Anyways, if you have special person in your life, just remember not to take them for granted!!!  Thanks for learning about my babygirl!  

Love you Caitybug. <3 xo.