One of the toughest things about having a child with complex medical issues and special needs is figuring out how to fit in during family functions, friend get-togethers, school activities, etc.
It is hard at times to leave the house, especially at the beginning. Not only did we have this fragile little baby that was intolerant to temperature changes and relied so much on skin to skin contact, but we also had all the "typical" baby items and all the special equipment that went along with him.
Leaving the house often took a lot of time. We had the diaper bag, a supply bag in case his feeding tube got pulled out, oxygen and oxygen tubing, dressings to hold all the tubing in place, apnea monitor, oxygen saturation monitor, suction equipment, syringes for feeding, milk, breast pump, and many changes of clothes because of frequent vomiting. Inevitably, we always had to clean up vomit while we were getting ready to go somewhere as well.
I have since learned that despite our son not being able to communicate, he has always been very good at reading others' emotions. He has never done well in high anxiety situations. He typically responds by vomiting. Looking back, this is probably why he always seemed to vomit when we were trying to rush out of the house when he was little!
Many times we opted just to stay home or to split up our family and have one parent go with the older kids while the other parent stayed home. Family tried to understand, but many friendships soon dwindled into acquaintances.
Our lives were very different. It wasn't easy to find babysitters that were qualified or felt comfortable caring for our son. We didn't want to take him to random places because of potential illness and sensory overload.
Telephone calls were also difficult to fit in amongst doctor appointments, home visits, therapies, calls to insurance and billing companies, and the general care of a child.
Our son is now four years old. It is interesting to look at how our friendships have changed since he was born. Our "needs" list has shortened since he was born, but we are still protective of where we take him. We still worry about illnesses. We still worry about crowds.
We go into hibernation of sorts during the fall, winter, and spring because a simple cold could either send our son to the hospital, or could end up turning into pneumonia. This makes getting together a challenge. It also makes it hard to go to many school and church functions. We try our best to split things, take turns, video or take a lot of pictures, or find a qualified babysitter for those times when we both need to be there.
Many of our friends are now on-line or long distance friends. We communicate mostly with people via text or social media. Many of my active friends also have a child with a similar medical condition, and some I have only met a few times in person if at all. But these people give me the most hope and strength. They know where we have been, they fear the same things we do, and their battles match our own.
Each year, we try to attend a SOFT (Support Organization for Trisomy 18, 13, and Related Disorders) medical conference. There locations vary year to year. We have been from east to west coast and places in between.
Our first conference was when our son was a year old. We walked into this room of strangers, and we were immediately greeted with hugs and warmness. All the kids around us looked like our son. Their families had a hard time getting out the door because they too had so much to take with obstacles that seemed to arise. Their kids vomited too. For the first time, we finally felt like we were surrounded by people that actually understood completely where we were at.
We had met our family away from family, our home away from home, and our new friends.