Gin & Zin

Interview with Janet~ with a Special Needs Child, and a Mom of Four

Meet Janet~

I am a workaholic mom of 4 and grandmother of 4. I enjoy working and being a nurse advocate for my patients. My third born child was born with a neuromuscular disease. My three other very healthy children and my fantastic husband of now nearly 40 years gave me strength daily.

My biggest strength as a mom is my ability to have such patience and strength within myself.

I enjoy my grown children very much by watching them raise my beautiful grandchildren. I am happy to have all of my family nearby and create family memories during camping, vacations, holidays, and birthdays.

My son Cody being the third born child was just like my previous birthing experiences. He was a term baby weighing in at 9# 3 oz. It was not until he was about 8 months old that I began noticing him not having normal hand motor skills, and his head began to lean to either side, not having good head control.

My husband and I knew this wasn’t normal, so we took him to a neurology appointment that we had arranged. The neurologist lacked bedside manners in a serious way. He informed us that Cody had a significant neurological deficit and when we get our health insurance established, to return to him for further work up.

We were devastated. I decided to take Cody on my own to Los Angeles Children’s Hospital ER within a few days after this hard news. It was at this hospital ER visit that I met the life long friend/neurologist that diagnosed Cody with Leukodystrophy- Krabbes disease~ a degenerative neuromuscular disease with a life expectancy of 2 years!

Our family endured many challenges with the care of Cody, but we all adapted to it well. A few months went by and we were surprised to discover that child #4 had been conceived! It was a very emotional time. I knew the new baby was due at the “2 year life expectancy” date.

The pregnancy presented my husband and I with many decisions to make. We chose to seek pre-natal counseling and genetic screening. #4 child was determined not to be affected genetically, like Cody was. So, now here I was with 2 healthy children (Shari and Chris), and a terminally ill child awaiting the birth of child #4.

Thank goodness for a strong marriage and bond that my husband I have to endure this time. Genetic counseling advised us to stay strong because statistics have shown that families usually split apart with this stress.

Well, Cody has declined rapidly during my pregnancy with #4, and was hospitalized for the first time for his congestion/respiratory system being compromised. His hospitalization came just a few days before my expected due date of #4. I’m sure you could only guess that on 12/31/88 in the early afternoon I was visiting Cody at the hospital, and contractions began. I was not able to hold Cody due to my belly contractions!

I informed my husband where I was and what was happening. I remained quiet to the hospital staff about my labor contractions. When my husband arrived I told them that I had been in labor and they immediately wheeled me across the hall to labor and delivery. Just 3 hours later our Amanda made her entrance. So, now there I was in the hospital with a new baby, and an 18 month old ill son.

A few days evolved, and Cody was ready for discharge. I experienced some minor complications and could not be discharged yet. My wonderful husband was now preparing to take Cody home on oxygen for the first time with our 2 older children. Well, you would think it couldn’t get worse.. But my complications prevented me from going home for a few more days and the hospital was now discharging our newborn home without me. I’m very thankful for such a supportive brave husband and my sister whom now had all 4 children at home without me.

I arrived home 1 day after my newborn. I was on strict rest with my legs needing to be elevated due to a blood clot. Thankfully I had a 9 year old daughter whom loved helping me with a newborn baby. Shari was such a blessing of a daughter being introduced to caring for a newborn. Thank goodness my husband was around and was very busy keeping Chris entertained.

I was soon being challenged by Cody who was not being able to eat well without choking. His swallowing abilities had declined during my hospitalization. This was only the beginning of Cody’s complicated deterioration. It was at this time I reached out to Cody’s MD and got him started on tube feedings.

His condition plateaued and declined over the following years to come.

Cody, all smiles and love
Amanda and Cody

Our family grew stronger together, and the other 3 children loved Cody so much. They dealt with his condition which limited our family, social life, and restrictions of their lives as if it was the “norm”. We, as a family, became closer and participated in social activities locally centering around Chris’s sports activities. Chris’s friends got to know Cody through seeing him at most of Chris’s sports events.

Cody’s demise was soon upon us. He lived to almost 9 years of age, surpassing his 2 year life expectancy. He gave us all lots of smiles, lots of experiences, some which I would never wish on anyone, and most of all, he built the Britton family tough and strong and strengthened our love.

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Britton’s~built strong.

Cody showed us that we need to LIVE each day to its’ fullest because it could be your last day! Cody gave me the interest in going to nursing school and becoming an RN when he was 2 years old. Not only did he impact my career choice, but his sister Shari and brother Chris chose to be nurses as well, with his sister Amanda also being in the health care field. I know that each and every one of us was impacted mentally, and very emotionally.

Group photos are a thing in this family

We don’t understand why bad things happen to good people but there seems to always be a reason, just need to hold your head high and find it.

Na Na holding one of her 4 grand babies

Ironically, Cody guided me to the nursing profession, and now, after more than 25 years, I am a Palliative Care RN providing compassionate care to terminally ill patients.

I have always been a believer that you can have anything you desire, you must dream big and be motivated and challenged to get your rewards!

Shari, Chris, and Amanda

I definitely want to recognize an organization that provided tremendous support and respite care throughout Cody’s entire life~ Alta Regional Center.

Janet and Paul with their 4 grandkids

 

Thank you, Janet. I wish I could have met Cody. Your story is a true inspiration. Your strength is amazing and your patience is truly a gift! Also, you went to nursing school with 4 children- 1 of which was special needs? WOMAN!!

 

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