A Child With Special Needs Blesses a Home

The couple had been married for 10 years and wanted desperately to have a child. Fertility treatments and practice had amounted to a single miscarriage and no child.

The doctors had been hopeful at one point but had informed the wife "You will never have a biological child".

The couple decided on possibly helping a foster care family by doing some respite from time to time. The hope was to slowly work into the foster care system and perhaps adopt one day.

Shortly after the many week training courses were completed and home inspections passed, the couple received a phone call. The social worker on the other end asked: "Are you interested in having a baby come into your home?".

The couple rarely went out of town and when the call came in they were leaving on a mini vacation to a local hot spring.
They answered and said, "Yes we would love to have a baby but we can't this weekend we are on our way out of town".

The vacation went well, the next week began as always and the phone rang again. "Are you interested in this baby?". "Yes, and Yes" was the answer.

The baby had a rare syndrome, Prader Willi Syndrome, (PWS) and had spent the first 4 months of life in a The Neonatal Intensive Care Unit (NICU). A partial missing chromosome from the biological father's side was the cause of the syndrome.

Due to the failure to thrive that accompanied the PWS the tiny premature baby, had a feeding tube and was unable to eat orally. A Bi-pap machine to assist with nightly breathing and an apnea monitor was delivered when the couple first met the little baby boy. No inside pets, smoking or other children were allowed in the home due to the baby's weak immune system.

When the nurse, technicians, social workers left the small house where the couple lived, there were machines, some clothes an undersized-baby and one overwhelmed couple.

The doctor's appointments were tiresome and daily. A myriad of doctors was involved and the closest specialists were 45 minutes North and 1-hour South. Trips either North or South were made daily and sometimes both direction in a day.

The nights were scary as there was a feeding machine that was hooked to the feeding tube. The machine would whir through the night until around 2 am then an alarm would sound. When the alarm sounded it meant the feeding bag was empty and it had to be removed so air would not get into the baby's stomach.

To make things more exciting the heavy apnea monitor had leads that attached to the baby's chest to monitor breathing. Lights flashed on this worrisome machine and a shrill alarm would go off if a lead came loose, which was often.

The third machine was a Bi-pap breathing machine. A mask was placed over the baby's mouth and strapped on to keep the airway open through the night. The machine hissed each time it pumped air in.

It was a wonder the couple slept at all.

A week later the infant would have a seizure and stop breathing briefly while on the man's lap. More medicine would be prescribed to keep the seizures at bay.

The 4-month-old would require daily physical training done by the couple to stretch neck muscles that had atrophied during the time at the NICU. The babies medical needs had been well met but he was adverse and unused to physical touch.

The couple was promised respite so that both could continue working but the respite was not provided and the woman had to quit working to stay home with the baby. She did not mind this and cared for him to the best of her ability daily.

The couple was frequently in and out of court not because they were mandated but one of the pair always went to see what the situation was with the biological parents. The father was not allowed to be around the boy which was good. The mother in private would say she did not want and could not possibly take care of him. In court, extended family would attend and to save face the biological mom would state how much she wanted to be unified with her baby.

Later the court would mandate the bio mom to attend all doctor's appointments and a case manager also was required to attend. This led to confusion. The case manager was male so there would be 1 man and two women at appointments. The doctor would have a hard time at first knowing who to address as Mom or Dad. Fortunately, the bio mom attended very few of the appointments or would show up after the appointment was over. One specific appointment had her showing up on time, waiting, then disappearing to McDonald's to get a biscuit just before the appointment began.

The Bio mom was not a bad person. She was just ill-equipped for the responsibilities of taking care of a fragile baby.

9 months after the infant arrived in the house the couple received an unexpected surprise. The woman was pregnant.
If the pregnancy held, the two would be blessed with a biological baby.

The pregnancy was successful and a baby girl was welcomed as a new member of the family.

The infant boy will be 20 in October, the girl will be 18.

This is a story that has many chapters. There were many highs and lows along the way. There were times the family was distraught, there were scary times and there were joyous times, as there are in any good story.

The important thing is that the family prevailed. The work was hard sometimes, but rewarding. That feeble baby with special needs grew up and to this day blesses those around him.