Tag Archive: Special Needs


Cabby and Baby Abby

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When I was fifteen I met someone who changed my life completely and irrevocably. Abby was my cousin Ilene’s fifth child and she changed life for the entire family. Abby was born with Down Syndrome and like many babies born with Down Syndrome she needed surgery to correct having her intestines separated, the hospital took Abby back for surgery when she was less than 24 hours old. Abby had an allergic reaction to the anesthetic and she coded (a cardio-pulmonary event) that resulted in her brain going without oxygen for fifteen minutes. Due to this traumatic event the labels and diagnoses attached to Abby grew to include Cerebral Palsy with Spastic Quadriplegia, Reactive Airway Disease, Sleep Apnea, GERD, Dysphasia, and significant Global Developmental Delays to name a few. After staying in NICU for a week Abby was taken back into surgery, given different meds and did great. She remained in the hospital another month before her family got to bring her home and begin adjusting to their new normal.

Little Jimmy and Abby

Abby with her older brother Little Jimmy

During these early months of Abby’s life we spent a lot of time with them all and Abby and I bonded in a unique and special way. She opened my eyes to the world of children with special needs who fight every minute of every day to live their lives to the fullest and defy all the odds. The trauma for Abby and our entire family did not stop there unfortunately. When Abby was fourteen months old her older brother, Little Jimmy (two at the time), accidentally drowned in the family pool in the backyard. the pain and loss of this event are impossible to explain and forever changed the family once again. The next few years were full of family turmoil, as is often common after the loss of a child. Abby continued to grow and develop in the midst of this turmoil and she was still beating all the odds and doing things the doctors thought she never could, to include recognizing people, places and sounds as well as rolling herself across the floor.

young abby

Fast forward to last year, when Abby was twelve years old and her doctors decided her scoliosis had gotten to the point that she needed spinal fusion surgery (basically placing rods in her back to keep her spine straighter). Anytime surgery and Abby are in the same sentence the family all gets a little nervous. Abby had her surgery and it corrected an 80% curvature of the spine to 40%. Abby’s one spinal surgery turned into four surgeries after she developed a severe infection. She ended up having to have an open wound vac and iv antibiotics for six months at home. In the middle of this latest struggle Abby began acting strangely and then one day her Mom couldn’t wake her up. Abby was rushed to the hospital with a blood sugar level of 1200 and in a diabetic coma. It was then that we all learned that Abby had Type 1 Diabetes. It took Abby three days to come out of the coma and she remained in the hospital for another nine days as she recovered.

Today Abby is a lot things; the most important parts of her are often overlooked. She is a fighter, stubborn as can be with a huge heart. She loves hugs, kisses, toys that make noise and being around people who love her. Currently Abby is wheelchair dependent, non-verbal and fed through a G-tube. Abby’s spine has to be supported at all times and she just received a new wheelchair tailor made for her. She clearly loves being able to comfortably enjoy the company of her family outside of a hospital bed.
Abby SmilingI got to see Abby a few weeks ago for the first time in years. I cried as soon as she grabbed my hand and the moment I saw comprehension cross her face as she remembered me and starting pulling me close for continual hugs. I also got to see how amazing she is doing and how hard her family is working to get her the best care imaginable. Abby has her new chair but her family does not have a vehicle equipped to get her around in so when Abby needs to go to the doctors (the only time she can leave now) she has to travel by ambulance. I have made it a personal mission to raise the funds to get Abby a van with a wheelchair lift so she can return to living a full and active life. If you can help me reach that goal I greatly appreciate it, if not please add Abby to your prayers and share her story of strength with everyone you know.

Cabby and AbbyIf you want to help Abby here are the ways :

Follow her story on FB : A Full Life for Abby FB Page

Donate and/or Share her Gofundme page: Get Abby a Wheelchair Van Gofundme Page

Shop the Thirty-One Fundraiser between August 1-14: Thirty-One Fundraiser

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I just wanted some chocolate, chocolate always makes it better, even Harry Potter characters know that truth. I thought I had a fairly good poker face on and then I caught sight of myself in the reflection off the drive-thru window… who was that woman with disheveled hair, dark bags under her tear filled eyes and pale skin? My poker face does not exist, I wear all of my emotions on my face for the world to see. Unfortunately for the young man working the drive-thru window a message of support from my sister came through my phone right as he came to the window and tears broke through and trickled down my face. He was gracious but very uncomfortable, I do not think many people cry in the drive-thru window.

To begin with let me be clear, I am very acutely aware of how blessed we are to have such a large beautiful family. However, one can be aware of the blessings and still be living in a rough period. We have had a rough couple of days here. Our weeks have already become consumed with four different therapy appointments each week and many, many doctors appointments. We are slowly getting a handle on what exactly is going on with our children and how to best help them through the storm. This week we are going to be adding at least three more services for them. I am so thankful that these services are available for them and for the amazing people who are helping us connect our children with what they need.

Living in a state of being on guard for any potentially dangerous behaviors leaves one exhausted when you are doing so for one child, when there are four soon to be five I have found that even while sleeping I do not rest. Even when the stars align and they all sleep well at night I am often up late trying to read up on SPD, RAD, LD, CMT and a host of other combinations of alphabet soup. Our children have come so far in the short amount of time they have been in our home and I am so proud of their progress, determination and hard work.

The number of times in a day that I am forced to accept of the fact that I am but one person, with the limitations of being human is unbelievable. Whether it is when two of the four are having a hard time and in need of comfort and my hands are full or if it is because we are running out of time to schedule therapies in the week. Everyone tells me how great the kids are doing and how improved their behaviors are, and still I end each day feeling like I should have done more to help them through the struggles they face.

As I drove home yesterday with my chocolate and tears I knew my Mom guilt had won this afternoon and that I needed to give myself some grace, let the tears flow and prepare to dive back in. I drove home praying and telling God how inadequate I felt and laid all my worries for my children in His hands. Someday things will be more figured out and we will go through the motions of therapies, appointments, meltdowns and set backs with the calm of the experienced. There is only one way to that space and it is through these new days of finding our way. There will be days I will be crying in the drive-thru, yet even on those days there is pure love in every facet of our days. Thankfully we have our Heavenly Father to help us through and we do not have to do it all alone.