Not Every Kid Gets to be a Pioneer

Sue and Stephen were overjoyed with the birth of there fifth daughter, but a few short months after her arrival they knew something was wrong, something was very wrong. This small infant could not keep any of her mother’s milk or any types of the various formulas down. She was not gaining weight or growing as a normal baby should. Her arms and legs were skinny sticks and her stomach began to swell, she displayed the signs of severe malnutrition. The frail infant resembled a Caucasian version of an Ethiopian child who was suffering from famine.

Her parents took her to doctor after doctor, specialist after specialist, and finally were led to Primary Children’s hospital. There a gastroenterologist diagnosed her with a rare digestive disease. Her mother Susan was told this child would not live to see her 5th birthday; Sue cradled her baby, and told her how special she was ….Not every kid is given such a wonderful opportunity to fight for her life.

The doctors struggled to keep this child alive for three painstaking years. At age 3 this toddler had her first IV feeding tube surgically placed. Her mother Sue was instructed by nurses how to run the IV machines, hook up the nightly 12 hr IV feedings and care for this sick child and finally Sue and her daughter were sent home.

The three year old began to thrive and grow. Each night as Sue hooked her small child up to the IV. She told her small toddler how special she was…. not every kid had their own fireman’s pole.

As the child became healthier she was able to attend school, but the young child’s abdomen was swollen and severely stuck out, her classmates would tease and make fun of her. Sue had to have clothes specially sewn for her young daughter to accommodate the little girl’s swollen and protruding belly. She told her little girl how special she was not every kid had their own tailor.

As a teenager the young girl began to learn how to administer her own nightly treatment and how to program her IV pump. Sue again told her how special she was and that not every kid was a brilliant computer programmer.

In high school when the girl became so ill she missed the majority of her sophomore year the school district sent a teacher into her home. Sue again told her daughter how special she was and not every kid got their own teacher.

At her daughter’s wedding Sue cried tears of joy, doctors long professed this day would never happen, Sue pulled her daughter aside and told her how special she was not every girl got to marry a husband who was truly a wonderful man and loved her just the way she was.

Sue…. Is my mother and I grew up with her telling me how special I am and that not every kid got the wonderful things I did.

As an adult I still struggle with my health and I still have my own fireman’s pole and a pump to infuse my nightly 12 hr IV treatment, and often I smile and think to myself not every kid has a mother as special as mine!

My name is Melinda and I live in Idaho. I am a special needs child who beat the odds. I was born with a rare digestive disease back in 1976 and spent much of my childhood in Primary Children’s hospital. I was never supposed to live past the age of 5, never go to school, never learn to drive, go to college , get married or become a mother. Yet I have accomplished all of those things. My mother always treated me like a regular kid and didn’t hold me back from doing anything I wanted in life.

I am now a stay at home mommy of 2 wonderful adopted kids, and married to the most wonderful, patient, loving, guy. After 9 years of marriage and multiple expensive and failed fertility attempts God sent us a surprise, a miracle I was pregnant. Now this pregnancy was quite a rough journey and took its toll on my body physically. This pregnancy required me to be on bed rest and hospitalized for over 2 and 1/2 months.

At 31 weeks into my pregnancy, my blood pressure had sky rocketed and kidneys shut down, doctors, and specialists were called in . My husband was told he maybe having to make a choice between his wife and this baby. I was told to prepare for an emergency C-section.

I gave birth to my own special needs daughter. Unfortunately she has some serious heart, bladder and Gastro-intestinal problems. She was born 2 months premature, and was on a ventilator to help her breathe, and has been in the NICU and will remain in the NICU for some time. Hannah is now 6 lbs and survives on IV tube feedings. She is a fighter and improving everyday. I know she is truly a miracle from from God and is here for a reason. I believe in the power of prayer. I know God never gives you more than you can handle.

A friend of mine once said " Life gets so busy and as moms we need to focus on what truly matters. My job as a mom is to guide my children thru mortality and get them into eternity." I have since made this my goal.- nothing else matters- Because of my own experience growing up with special needs and now having a critically ill daughter with special needs, I feel so privileged that God would trust me with this task of guiding her thru mortality and getting her to eternity.

Hannah has inspired doctors and some genetic specialists, to do genetic research and studies on Psuedo-Obstruction which is a rare disease that she and her mommy have, very little is known about this disease and very little research has been done on this disease. She is "pioneer" in this area of medical research, blazing a trail for those who will come after her. I feel like she is our family's little "pioneer" continually pushing forward, with courage, making progress everyday. Hannah has such a strong spirit. She inspires her parents to have more faith, and trust in the Lord.