I am overwhelmed and still adjusting to the new world of having a special needs baby. I have a 5-year-old, 4-year-old twins and a 7-month-old “special needs” baby boy. Our son has a very uncommon chromosome duplication (3p26.1) and spent 11 weeks in the NICU. Most of our doctors, specialists, and therapists have emphasized that we cannot know what to expect from our son, Walt, in terms of development since his chromosomal abnormality is so rare. Until recently, I had been hoping for the best, thinking that all of the “magical” early interventions will help him to overcome his delays and become “normal,” at least in terms of his classroom education and physical abilities.
One therapist helped us order a supportive stroller for Walt that is designed for long-term use. She and the technician measuring Walt discussed “transportation” and I inquired if this would replace his car seat. They glanced at each other nervously and finally admitted that they were talking about the school bus. My husband and I were shocked! Why on earth would our son not be able to walk by the time he starts school, especially with all of his intensive therapy?
Some of his more recent setbacks and new diagnoses have caused me to realize that Walt having “normal” abilities and going to a regular classroom seems less and less likely. It’s very discouraging. Looking for support and someone who “gets it,” though somewhat helpful, has left me feeling even more discouraged. It is wonderful to meet others in similar situations and read blogs from special needs parents having a special needs baby. But, I am also realizing more and more that these fears and worries never seem to end, and I can physically feel the weight of the years to come upon me.
I am struggling to find a new normal and increasingly feel like I am living in two separate, exhausting worlds.
We have a wonderful nurse for our special needs baby, which gives me some free time each weekday. I just started a part-time, on-my-own-schedule job in my field of Gerontology. I’m told over and over to take time to care for myself, so I occasionally take the girls to the free babysitting at the gym, even if I only have time for 20 minutes on the elliptical machine.
I’m trying my best to keep things normal for my older daughters and do all of the fun things we used to do, while preparing my older, more timid daughter for the new world of kindergarten this fall. I’m trying to stay involved with all of the moms groups and take the kids on the same outings and keep them involved in the same programs like dance class, and the summer reading program at the library that we used to go to. I enjoy being involved at my twins’ preschool, and I never ever want to turn down a play date from a supportive friend.
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| Doing physical therapy with Walt. |
I feel like those are breaks for me, and while it’s wonderful to continue to do all of these normal things, I feel intense stress thinking of everything else I need to be doing for my special needs baby. I feel guilty for enjoying myself when he is not there, as if I am not including him in our family. We have tried going on a few outings as a family and found them stressful with our son’s risk for seizures, tube feedings, and worries about sensory overload.
I feel like I have to act normal and like everything is okay so I won’t be Debbie Downer, or have others think I can’t handle my responsibilities. When kind, thoughtful friends ask how I am doing (not just Walt), I don’t know how to answer. I am a mess, and I feel like I could burst into tears at any minute. In fact, usually when I am alone, I am crying. I am always aware of our nurse’s schedule and when I need to get back so that she can get home to care for her own family. I miss the lazy summer days when I could just let the girls play at the playground or go on a leisurely outing for hours, making it home just in time for my husband to get back from work.
Having a Special Needs Baby
I am not exaggerating when I say that every single day (occasionally we may have one day a week off) my special needs baby has multiple doctor or therapy appointments and/or home visits. We schedule all of our outings and my commitments around his medical schedule.
I come home in the afternoon with the girls and switch gears into Walt mode. I try to do his therapy exercises (though now we have toned them back a bit, as we are discovering some heart issues and waiting to hear back from doctors about a procedure to “fix” the problem … widening the gap in his developmental delays, I fear). I try to constantly talk, read, and sing to him to help him hear every speech sound in spite of his hearing loss. We play with special toys to help stimulate his vision processing. I worry and wonder and cry about his future. I try to find new ways to connect with him despite his sensory deficiencies. Tube feedings, calling doctors to give updates and schedule new visits, working with therapists and insurance to find the best way to get new equipment, caring for all of his devices and equipment are also on the agenda.
Then there’s trying to keep the girls from tearing our house down without (always) resorting to watching tv. Then more crying. Then trying to fix dinner and getting everyone ready for bed alone on the nights my husband works late. Then making sure my son gets his medication.
With my son’s recent setbacks, I have been feeling more discouraged and stressed and worried. Before that, I used to feel a bit more comfortable in “Walt’s world.” I could focus on seeing the tiny bits of progress he was making. I was feeling more comfortable with all of his care and equipment and monitors, and I do know a few people who “get it” that I could talk to. I had felt like the two worlds were starting to slowly merge, and I was starting to get into a “new normal.”
Now since we’ve had some pretty significant and scary setbacks, I feel like I am struggling to do my part to maintain both worlds. It’s exhausting and miserable, and I still have not found a way to cope. I can definitely find things to feel grateful for and realize that everyone, everyone, has significant struggles in life. I just fear that this will never change and I need to get used to the separate worlds and I will feel this stressed and scared and guilty and exhausted forever. It feels like two steps forward, 8 million steps back. I guess, just as with Walt, time will tell. And hopefully I can find some way to manage better in the meantime.
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Tags: chromosomal abnormality
