I read an article recently about a mother who felt battle fatigued, fighting every day for her child with special needs and I just wanted to crawl into the article, find her, hug her and be like YES I get this, this is me too.
I am battle fatigued.
Before I offend anyone, I’d like to say that I appreciate the questions about Oliver and what he has been up to, I also don’t mean to say that I have it worse off than anyone else because I know things could be worse. I am not writing this for pity, or for sympathy. I am writing this like I write all of my posts, because I need to. To get it off my chest, and hopefully for someone who reads it that is going through the same can know that they are not alone.
My son is 14 months old, and everyone just assumes that now that he is at this age he is more independent and this is when it gets easier. No. Oliver is a 14 month old that does not crawl, let alone walk. He does not eat solid foods, he does not feed himself, he doesn’t even hold his own bottle. He is in many ways still an infant, but boy does he have the personality and strength of a toddler. He is extremely dependent on me, and as much as I love the cuddles, it’s exhausting.
I am battle fatigued.
I feel like I am in this black whole of doctor appointments, and lists to make, and papers to fill out, and phone calls, and I’m losing the battle. I showed up to an appointment that wasn’t until the next week two weeks ago because I can’t keep up with it. When we figure out one thing two more pop up. This battle is exhausting and I’ve realized it’s time to let something go.
I know that it wont always be like this, sometimes it gets better but the last month and a half have been pure chaos. And through the chaos I have realized that my dream to have the career I want is over.
When I have mentioned in the past that I don’t know how I am going to have a career and be a single mom I have gotten the eye roll, like “you’re just being lazy, if you really wanted it you would do it” and “I know plenty of single moms who have successful careers.” That is great for them, how many of them have a child with special needs?
Let’s just break down the last month and a half shall we? And before we begin we have to remember that Oliver has physical therapy every Monday at 3:30, Occupational therapy every other Wednesday at 10, and will begin speech therapy soon. These times are not chosen because they are convenient but because they are the ONLY times he could be fit in to the therapists extremely busy schedules.
1/14 – We drive almost three hours to have an MRI done at a children’s hospital because no one in our area will put him under anesthesia because it’s “too risky”. After 45 minutes and 10 different people trying to put an IV in Oliver they give up and tell me we will have to come back, so I pack our bags and reschedule.
1/15 – At 2 am Oliver starts throwing up and having explosive diarrhea, he becomes lethargic and refuses to eat. I take him to the ER, he is dehydrated and they have to put an IV in HIS SCALP to administer fluids.
1/16 – Back in the ER because he is still refusing to eat, they tell me to force him, thanks ER doctors, what great advice.
1/23 – Oliver starts to get sick and has begun to refuse to sleep.
1/25 – Spend over 3 hours in urgent care, Oliver is diagnosed with RSV.
*I then spend far too long calling and canceling his MRI and rescheduling a third time and rescheduling an orthotics appointment that was supposed to happen the next day.
1/28 – Take him to the doctor where they say he needs to be admitted to the hospital where we spend the next three days in what I can only describe as the depths of hell.
*I then have to reschedule a neuro appointment for a later date and am on hold for over an hour.
2/3 – I spend over an hour on the phone with a social security person to re-evaluate Oliver’s SSI as I explain over and over how Down syndrome doesn’t just go away.
2/4 – I have an appointment with his First steps coordinator to re evaluate milestones and discuss integrating new therapies. It’s always super fun to talk about how behind he is.
2/6 – Spend far too long on the phone fighting with the doctor about why they refuse to refill his acid reflux medicine.
2/10 – We are off to Riley’s again and get the MRI completed.
2/15 – Orthotics appointment, he has to get braces and a compression vest, they warn me I might have to pay out of pocket for these, yay.
2/16 – Still no word on his MRI results so I spend over three hours playing phone tag between his pediatrician and the hospital while they blame each other for me not having the results.
2/20- Oliver becomes sick again and I have to cancel PT and move it to a later day in the week.
2/22 – Give up and letting it run its course, take him to the doctor, he has his first ear infection.
Today we are still recovering from being sick and tomorrow he will have an eye doctor appointment at 10:15, a neuro appointment at 1:30, and PT at 3:30.
We are still waiting for his tubes consultation and surgery, circumcision, and now his shudders that we ruled as seizures are back so that diagnosis process will begin once more.
So tell me again how I can be a single mom and still find a job in my career field?
I am battle fatigued.