We are all very aware that being a parent to ANY child is stressful. There is the financial concerns, constant worrying about their health and safety. Concerns that your making the right choices. Making choices for ourselves if one thing; making choices for a family is really heavy.
Many of us know of some of the extra stresses that families with special needs face, the extra costs of medical equipment, countless appointments, getting your child to and from one therapy appointment to another, and having to basically become a medical expert over night. Then there are the social stresses that many of us deal with. Will our child be accepted by his/her peers? Will they make friends? Will my family be supportive and adapt to his/her needs? How will I get out and about with my child and ALL of this equipment? These are all stresses that many of us know about and/or deal with all the time.
For some families, like mine, there is another layer of stress that is not really talked about as much. We rely heavily on home health nurses. Holidays and weekends very often mean that the help that we have come to rely on simply is not available.
Our daughter was born with MANY medical complications. She would not be able to eat or talk and would not be able to walk or move on her own at all. Her airway risk means that someone has to be alert and by her side 24×7. We have to suction frequently or she will aspirate and become very ill (or worse). She is on continuous tube feeds and has been since birth. In addition to managing her airway, we have to keep her formula running, medication for her countless medical issues, diapering, positioning, etc. It is a full time job to just keep her alive and well.
We have night nurses that come in and manage our daughter’s needs so that we can get a little sleep. Then during the week we usually have day nurses here to help me while my husband works. Now instead of looking forward to holidays and weekends, I often dread them. I feel like a total Scrooge. Holidays and weekends are when our help takes off. I don’t blame them. They all have their own families, and if I were in their shoes I would take time off to be with my family as well.
No help for the holidays means that we are the nurses. If the night nurse does not work, then I am up all night with our daughter. I usually drag my husband out of bed around 6am so I can get some sleep. But that means that anything he would usually do in the morning has to be put on hold while I get some sleep. Then if there is no day nurse either, anything that we need to do has to be coordinated around managing our daughter’s needs. My husband and I are an amazing team and have found ways to tag team efforts for EVERYTHING. It’s a lot of work though. We have to tag team preparing the holiday dinner, tag team greeting guests, tag team bathroom breaks- all while going on little to no sleep. Luckily our family and friends are great and totally understand our situation. Most of the time they will take over a lot of the details so we can focus on our daughter’s needs. Not everyone is as lucky though.
I still look forward to seeing family and friends, and I still love the holiday season, but as soon as we get our reduced holiday schedule my anxiety level starts to rise. If you have a “Special Needs Scrooge” in your holiday celebrations, try to cut us a little slack. We’re doing the best we can!
Abosluty true ! I went from my daughter rejecting her on kidneys to my son and we were told hydroclus to cerebral palsy to they are still finding things wrong . We live at the hospital , My saying is we should just pitch a tent out in the frount and move in !
Thank you well said for those who have no clue