SarahSarah Sarah quit her social work job to become a stay-at-home mom when her twin girls were 1, their older sister was 2, and her husband graduated with his doctoral degree and got a full-time job as a professor (aka could not stay home with the kids on his days off of school, and full-time free childcare from wonderful grandparents was not an option!). Now the twins are 4, their big sis is in kindergarten, they’ve added a baby brother to the mix, and Sarah is getting back into part-time Geriatric Care Management. She loves spending time outdoors and trying her best to do crafty, educational activities with the girls, including reading tons of books with them! If you would like to contact Sarah, e-mail her at mumblingmommy@mumblingmommy.com.

I sit crying in the car in the parking lot of the park, fast food open and untouched on my lap. I haven’t had time to eat yet today, and it is nearly 6 p.m. I had tried browsing at the bookstore – the twins have a “Mister Men/Little Miss” birthday party coming up and I can’t find the original books anywhere – but I just can’t stop crying. Was it about my special needs baby, or the fact I couldn’t find books?

I feel intense sadness and guilt as I remember the days when I used to take my girls to story time at the bookstore. We rarely have time to do fun things like that anymore. I’d grown accustomed to “publicly crying,” as I called it, during my infant son’s 11-week stay in the NICU, but I thought I was over it. We thought things had been going so well, and I felt like our family had gotten adjusted to our “new” normal with our son.

Being a Mom of a Special Needs Baby

I don’t know what “label” to put on Walt. Medically needy? Special needs baby? He has a very uncommon chromosomal duplication, so there is no syndrome or label, and not much of an idea of what to expect.

After getting a second opinion on his vision, we finally have somewhat of a diagnosis: cortical visual impairment (CVI). The structures in his eyes are normal, but his brain has trouble processing what he sees.

After waking this morning to one of our twins informing us that her sister puked all over her bed – the never-ending recycling stomach bug strikes again – I revamped our plans, getting grandparents to come over earlier to stay with the sick child and dropping our other two daughters off with friends at a nearby splash pad. Then I spent the morning at a mommy and me group for kids with vision problems. I’d been hopeful that meeting other parents dealing with at least one of Walt’s many health problems would help me, and the moms did seem great. So friendly, calm under pressure, and … could it be … happy?

The moms gave me hope that I could someday accept all of this better and get to where they are, but watching the other kids in the group caused me to lose some of the hope I’d had for Walt’s vision. The eye doctor had told us that kids with CVI typically see “some” improvement in their vision. Silly me, I’d taken that to mean he will hopefully, eventually, have normal vision, but I am quickly realizing that this does not seem likely.

After being invited to join the deaf AND blind group (Walt has mild to moderate hearing loss and uses hearing aides as well – lucky me ANOTHER fun group to join!), I run to the park to pick up the girls and head to the hospital, where my husband meets me after his morning at work to take the girls home to grandma. Another partial day of work for him.

Bloodwork, pulmonologist, and cardiologist are next on the agenda. We are trying to figure out why our special needs baby son still needs oxygen, and why his oxygen requirements have in fact gone up since we left the NICU nearly 5 months ago. We are discussing some of the tests he had while hospitalized last week (his 2nd hospitalization since we have been home from the NICU).  There is some debate between silent aspiration and complications from his atrial septal defect (ASD, a hole in his heart). One doctor tells us to stop feedings by mouth completely and go back to using his feeding tube. Another feels the problem is likely due to the heart defect and is going to talk to surgeons at another hospital about performing the procedure to repair the hole much earlier than usual.

Apparently, kids with ASDs usually see no complications and wait until age 3 before the procedure is performed, to give the hole a chance to heal on its own. Our son’s is quite large and does not appear to be likely to heal on its own, so we are looking at doing the procedure very soon, probably before his first birthday (he is 7 months old). We will be consulting again with our feeding team therapists for more guidance on what to do about feeding him.

I am sad because although our special needs baby son is so far behind developmentally, he has come so far with feeding, going from a feeding tube to eating everything by mouth, and he enjoys eating. I am sad because I want to snuggle with him, but he arches so much that I have to go through tons of his physical therapy exercises to wear him out so that he will relax in my arms. Even then, we cannot snuggle for long because he gets hot so easily, and when his temperature rises, he is at risk for more seizures.

I am scared about his heart and worry so much about his future. I am sad because I miss doing normal baby things with him, and normal summer things with my other three kids, or even normal things as a family. I am sad because my husband and I can never go out together because Walter is so complicated we don’t have a babysitter who can handle our special needs baby (though we are so lucky to have a private duty nurse who helps to care for him during the weekdays so that I can get some time in with my girls). I am stressed out from trying to continue to do normal things with my kids and trying to finally start a new job in my field that I have been working toward for years, along with managing all of Walt’s appointments and therapy visits and phone calls and doctor updates and bills.

It feels like there is no end to all of this, and I will feel this way forever. It helps me to stay so busy that I do not have time to think, because when I do have time to think I worry and feel sad and guilty for so many things.

I had planned on taking a walk at the park, a healthy way to cope, but I find myself unable to stop crying. I don’t feel like adding this park to the list of places I have publicly cried! As I sit crying in the car, I am trying the strategies my counselor has told me to use when I feel sad. Saying STOP IT: not working. Giving myself a time limit on crying: I can’t even think straight enough to try to follow such a complex plan right now. Feeling grateful: I can think of one million things to be grateful for, and I also think of one million ways this situation could be worse, but neither of these are helping me right now.

I think of my many supportive friends, who always say to let them know if I need anything. I want to call and talk to someone, but I hate the thought of interrupting someone’s busy normal life with my sadness.

I remember that I missed my second of three daily doses of anxiety medication, and I take that with a sip of my lemonade and make myself eat some cold French fries and chicken strips as I continue to cry and think.

Then all of a sudden, like a light bulb, I remember what a friend told me back in the NICU days: “It’s okay to be sad.”

It doesn’t make it all better. It doesn’t mean I can sink down into it and go back to what I call my “ice cream and wine nights,” but it does take some of the pressure off for the moment. I don’t have to frantically try to think of a strategy to feel better or normal. For this moment, it is okay to just cry and feel sad. The thought of simply accepting how I am feeling in the moment helps me to relax immensely.

Eventually I calm down a bit and head home to my family, hoping that no one else has gotten the dumb stomach bug and wondering how our sick daughter is doing. I still feel sad and guilty and stressed, but I also feel a bit calmer, and just a little bit stronger and ready to continue to trudge along and do the best that I can do for my special needs baby I love very much.

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Category: Special Needs

Tags: atrial septal defect