So I think I’ve touched on my daughter’s special needs, but I’ll recap. She was born without her corpus callosum, which is a band of nerve fibers that connect the right side of the brain to the left side of the brain. Most people probably don’t even know what a corpus callosum is, and take for granted it’s incredibly important function. We found out that Lauren was missing this part of her brain at around 24 weeks when I was pregnant. Not soon after, we found out that she has a genetic mutation that most likely caused this part of her brain not to develop. Luckily, this is the only abnormality in her brain which anecdotally has been shown to have better long term outcomes. Unlike our current pregnancy, which has been incredibly difficult (of course), with Lauren we received news “She could be completely fine, or she could be totally mentally retarded and incredibly handicapped. It’s a wide spectrum”. At 2 months, Lauren started to refuse to eat and we had to ultimately make the decision to have a feeding tube surgically inserted into her stomach. She has had problems with gaining weight and even now with “good weight gain” she is barely on the growth curve. Incidentally, many kids who have a similar genetic mutation as her have an extraordinarily difficult time gaining weight, so I really don’t pay much attention to her growth because in my opinion it can’t be compared to “typical” kids. She is growing, learning and gaining new skills every day. She is in Occupational Therapy (OT), Physical Therapy (PT), Speech & Language Therapy (SLP), and Feeding Therapy (FT). So on any given week, she has approximately 4-5 hours of therapies split up into 4-5 different appointments. Two of the therapies are at one facility, one is at another and one comes to our home. We also see several medical specialists: neurology, gastroenterology, genetics, endocrinology, ophthalmology, developmental pediatrician, and of course her regular pediatrician. Her medical appointments have finally gotten to the point where they’re either yearly or maybe 1-2 times a year. In addition to all of this, I work three 12-hour days per week and have weekly appointments for myself at this point in my pregnancy. When my husband is deployed, 100% of this falls on me. And honestly, I get through it all because it passes the time quickly and I don’t have much choice. I’m lucky we have an incredible nanny who doesn’t mind bringing Lauren to some of her therapy on days I’m working.
So a couple of weeks my husband came home after being gone for 2 months. He had some time off, and I could tell he was in a bad mood. I asked him what was going on, and he replied “I am on vacation, and we can’t even enjoy it or get anything done around the house because you have appointments scheduled all day every day”. Of course, immediately getting defensive, I replied to him something along the lines of: Yeah bitch, I do all of this shit BY MYSELF when you’re gone. Welcome to my life. Seriously, he has the nerve to be upset about me trying to do the best thing I can for our kids? Lauren will absolutely (and already has) benefit from all of this early therapy. Am I the only one who sees the importance of getting her this intervention? And his reply to me reminded me why he is the best freakin’ husband on Earth and why I’m so lucky to have him.
No Jess. I know how important her therapy is. You’re a rockstar and I don’t know how you manage it all. BUT this is not healthy. When do you get a break? When do you have time to take care of yourself? Isn’t there a way to schedule all of this so that you have time to breathe, too?
I think every parent is guilty of prioritizing their children’s needs above their own. And even if you don’t have children, it’s easy to focus on work/school/friends/etc. and prioritize those things over self care. While I will argue that I don’t have much choice about how much “me time” I have in any given day, week or month, I am absolutely guilty of scheduling so many appointments that I am often out of the house from 8-4 on days that I’m not working. I would like to think that I’m doing it for the best interest of my kids (especially when it comes to Lauren’s therapies), but subconsciously I’m sure being out of the house and focusing on something other than our current situation is my own twisted way of not having to deal with what’s going on. That’s not to say that I haven’t dealt with it, because I think I have. But I have also neglected by own health trying to optimize everyone else’s. I find myself telling my doctors that “I’ll have that test, but I’m not honestly sure when I will have time to do it” True story, I told TWO different doctors in two different specialties that I couldn’t do something they thought important for my health because I don’t have time. I am officially THAT patient. Example: 4 weeks after getting a referral for a cardiologist because my heart rate was going well into the 150’s with shortness of breath, I was finally able to “fit in” an appointment. When they told me they were thinking of admitting me to the hospital to rule out some dangerous medical conditions, I literally said I didn’t think I had time to be admitted and asked if we could do it outpatient. I am the person that medical professionals hate. I’m realizing now that I really need to start making myself a priority because I need to be my best and healthiest self to take care of my kids. We are about to lose a baby and even though we’ve had several months to prepare, I’ve been offered by so many people/agencies/offices to be put in touch with counselors. Have I gone? Nope. Why? Well, 1. I’m stubborn AF and 2. I DON’T HAVE TIME. I saw a therapist when I was pregnant with Lauren and had a lot of trouble with the news that our daughter may have severe special needs and a terrible quality of life. I really should see one now, because even though I am okay right now, I don’t know if I will be when we have to say goodbye to baby G. I don’t really even want to think about it because it causes me to start to ugly cry. Which obviously means I need some outlet and should really ought to talk to someone about it. But why is it so hard to step back and engage in self care? I am open to any and all advice, because even though I can rationalize the importance of it, I’m not ready to start canceling or rescheduling appointments. This motherhood shit is hard.