About 2 1/2 years ago, when we first learned via ultrasound that our son had some unusual characteristics of genetic abnormalities, I remember thinking I would do my best to keep life as normal as possible for his sisters.
I would not become so preoccupied with all of my son’s special needs that I surrendered normal activities and time spent with his sisters.
I also remember distinctly resisting the title of the special-needs mom, or the idea of letting that title be my only sense of identity.
It has been very challenging to do this through all of his therapies, hospitalizations, doctors’ appointments, treatment regimens, and all of the stress and emotions that go along with parenting a medically complex, special needs child. Yet I have tried hard to hang on to at least some of the vestiges of a “normal life,” especially for his sisters. Throughout his 77-day NICU stay (and his many subsequent hospital admissions), my husband and I made sure that our girls made it to preschool, that one of us was there for our volunteer days and parties, that they didn’t miss dance classes or fun community activities and traditions, even if it meant that one of us took them while the other stayed home with Walter.
Walt is oxygen dependent and through the fall, winter, and early spring has had frequent hospital admissions with respiratory issues. We have spent so many holidays in the hospital: Halloween, Thanksgiving, my husband’s birthday, Christmas, New Year’s, St. Patrick’s Day, Valentine’s Day, and my birthday. Most recently we came to the hospital on Walter’s second birthday. I fear that, like the previous two years of his life, we will be spending many days in the hospital until spring arrives.
In fact, as I write this, it is October 21, and he has been in the hospital for 14 days so far this month. He spent the first week of the month in the hospital switching to a somewhat complex new ketogenic diet (more info), which will hopefully decrease his seizures. While in the hospital, he developed a respiratory infection and had to stay extra days until he recovered enough that we could care for him with our home equipment.
Throughout these many hospital stays, my husband and I continued to work on our regular jobs. My grandmother passed away and we attended her funeral. We went on a quick weekend getaway vacation that the girls loved (thank goodness for grandparents! ) but that challenged my husband and I as we cared for Walt in a new setting while adjusting to his new diet and medication routines, which are much more complex than they used to be. We have also tried so hard to get the girls to their dance classes, soccer and basketball camps, and Girl Scout meetings. We help them with homework, attend parent teacher conferences, keep up normal bedtime routines, and plan guilt-induced extra fun experiences. That’s all in addition to keeping Walt’s therapists updated, canceling and rescheduling doctors’ appointments, and dealing with insurance and billing issues regarding his special needs.
I am drained and exhausted and tired of trying to stay normal.
I am tired of planning my weeks out, and scheduling work visits only to disappoint my clients and get further behind on work because I am in the hospital with Walt again. I am tired of being away from my husband and either my son or my three girls as we split up to maintain coverage for our kids. I am so tired of cafeteria food and hospital beds/couches, and running around to try to get our girls where they need to be.
I am exhausted and depressed and worried and scared thinking about the future – the rest of this winter, as well as my son’s future, wondering how many more illnesses his lungs can handle.
I am tired of seeing pitying and pained looks from doctors and therapists as I ask if there is anything else we can be doing to make his lungs stronger; they have no real answers. It seems we are doing everything that we can do.
I distinctly remember the day when I waved my white flag and surrendered to the NICU. It was a very traumatic day; he had several apneic episodes where he stopped breathing, turned gray, and had to be resuscitated. We later learned that they were seizures, and after six episodes in one day, when I had feared he was going to die many times, I had a complete breakdown. It was the first night I did not stay in the hospital with my son, and I ended up in the emergency room myself after a scary panic attack. I distinctly remember thinking, “You win NICU. You got me. You defeated me. I can’t handle this.”
I was so sad, disappointed, and angry more recently when we ended up in the emergency room and were subsequently admitted to the hospital on my son’s second birthday. I feel defeated, and I’m waving my white flag again as a mom of a special needs child.
I give up on trying to be normal right now.
I have not gotten my daughters to their regular activities, but I have had them here at the hospital with me, because I just want our family to be together somewhere for a little while each day. I have barely kept up with any of my work tasks and find myself barely caring about them, and I wonder and worry how I will be able to keep up as we enter fall and winter, with the uncertainty of how many more hospital stays and respiratory illnesses are ahead of us with our special needs son.
I am tired. I am tired of trying to work with our son’s home nurse, as she is getting frustrated with having no work for so many days and is concerned about her own financial situation. Although she loves Walt and our family, and the feeling is mutual, I worry that she will give up on our case in search of a more stable one.
I am tired of trying to act normal around others in our typical day-to-day situations: school volunteering, Girl Scouts, dance classes. I’m tired of trying to act as if these activities even matter to me right now.
And I even give up on trying to plan fall-themed fun. Anyone who knows me understands that I get manically obsessive with trying to do every fun fall thing with our kids.
I feel like making plans is futile, as we never know when we will be back in the hospital with Walt. I give up. I wave my white flag and surrender to the special-needs/hospital lifestyle. I am too exhausted and drained and stressed and sad and worried to be anything other than a special-needs mom right now.
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