By Dona Darr
“Girl, I don’t know how you do it,” is a comment I hear all the time. Here is my response to that statement:
Parenting any child has its challenges. Parenting is filled with ups and downs, right ways and wrong ways. None of us get it perfect all the time. We all make decisions every day to help our children be happy, healthy and successful. Parenting a child with primary immunodeficiency disease isn’t really that much different than parenting a “normal child” when you look at the whole picture.
When my child Emily was a baby, I changed countless diapers, got up in the middle of the night for feedings, and took my naps when she napped, just like any other parent. I doted over her and shared pictures of her every chance I got, just like any other parent. I have been the dance class mom, the soccer mom and the softball mom, while attending the myriad of other activities that a child can enlist in, just like any other parent. I have helped with homework and discovered that I, in fact, am not smarter than a fifth-grader.
As parents, we take care of our children’s needs and most of their wants. We laugh, we cry, we worry, we love them with all that we have. We do all this because of our deep desire to teach them the things they will need in order to face the world on their own. When you look at the big picture, my job as a parent is no different than anyone else’s.
It’s only when you break that big picture down to smaller snapshots that the perspective changes. I have snapshots of holding Emily down to have IVs put in her arm because she is sick with pneumonia; I hold her down because that’s what is needed to help her get better. I have a snapshot of her being carried off for surgery to put tubes in her ears because she has had seven ear infections in four months; I do that because it will make her better. I have a snapshot of her being wheeled away to have her tonsils removed because she has had countless bouts with strep; of the countless blood draws over the last nine years; of more hand sanitizer and disinfecting sprays than any one human should own. If smell could be incorporated in a snapshot, it would smell of bleach, the ultimate disinfectant. There would also be many, many snapshots of doctor and ER visits, of daily medicines, of meetings with school administrators and teachers about 504 plans. I do all these things because I know it’s what will help her get better.
The statement, “Girl, I don't know how you do it,” should actually be directed at my daughter, because she is the one who gets sick all the time. It is Emily who gets stuck with the needles and has to go to the doctor and ER. She is the one who takes six medications a day, every day. Emily has difficulty waking up in the morning because her head and body aches all the time, and even though some days are harder than others, she gets up and she gets through the day, every day. You see, she is the amazing one who endures life with chronic illness. All I do is what any other parent would do: I support her in any way I can. I remind her to take her meds. I drive her to the doctor or ER. I am there for her when she cries because some days it gets a little overwhelming. I do whatever is needed at any given time.
All parents will do what is necessary to protect their child. Even though my snapshots include much more medical mumbo jumbo than families with healthy children, I do no more for my child than any other parent faced with the same circumstances. Only our daily routines are different, but the ultimate goal is the same: You do what you need to do to raise a happy, healthy child who is ready to face the world.
How do you do it?