I have all but given up on the idea of ever living a “normal” life again. When I say normal, I mean the regular day-to-day busy. I have always wanted to be a “soccer mom”. Taking the kids to sports games or music lessons or dance lessons. Then running home to try to get the dinner on the table as quick as I can, and trying to keep up with the housework in between it all. I’d have a glass of wine somewhere in the middle of all that and catch up on my favorite soap opera mid-afternoon. Then in the evening Husband and I would snuggle up and watch The Bachelor and laugh at all the idiot girls, and root for our personal favorites. It’d be busy but tolerable.
I have since come to the realization that I was an idiot. I’ve never even liked soap operas, and wine is just okay. I drink beer. I DO however like the Bachelor(ette).
Even when I just had Buddy things were a bit shocking for me at first. *Do babies always throw up this much?!* *Wait… you mean I have to get up literally every three hours to feed him?!* Doy. It was like I knew these things… but didn’t really process it until I had to do it. With the girls it’s been even harder. Not because of the daily care, that’s easy peasy now. I mean the rushing to the hospital at all hours of any given day. Finding a last-minute babysitter, getting all three kids ready to head out the door and oh yeah… I didn’t get myself ready.
I hoped that after about three months things would settle down for the girls and I could stay home more often. I was dying for that three-month mark. I felt like I was abusing my marker board calendar for how much I had written on it every month. Last month I only had three free days between doctor appointments and physical therapists. So when three months came I was SO excited. At first it looked beautiful. Instead of three free days, I only had three appointments. Well, that changed quickly. I now have most of the month booked up again. Worse yet, now that we’re finally getting somewhere with the girl’s diagnosis with their B12 issue the doctors keep calling me and asking me to drive the hour to Children’s that day or the next. HURRY UP! THIS CAN’T WAIT! NOW NOW NOW! I had to drop everything and go for more testing.
Today was one of those days.
I was SO looking forward to sleeping in (until 8:00) and staying in my pajamas (until they got thrown up on). Not so Mom… I got an appointment scheduled and headed down. Come to find out even though we’ve been giving the girls their nasal spray treatment it’s not doing good enough. The normal range is from X-300. At first, the girls were both in the mid 2000’s. The nasal spray brought them down to the low 1000’s but it should have done more. They also aren’t processing it how they’re supposed to. Now they want to go from a B12 nasal spray to a B12 injection. It’s two injections in a row once a day. I have to do it. I know it’s supposed to heal them and it’s for a good cause, but they don’t. I am already nearly in tears thinking about their little faces looking at me crying wondering why I’m hurting them. It just breaks my heart.
Then they wanted to get a skin biopsy of both girls to send to Canada for some rare testing something or another… I honestly don’t pay much attention to the lingo anymore. All I care about are the results and what it means for a diagnosis/prognosis. So they got a little chunk of skin from both girls right under their armpits on the inside of their arms. They numbed the skin in the area, and now I’m just waiting for it to wear off and the crying to begin. I wouldn’t blame them.
Now that we’re getting deeper and deeper into the “genetic defects” list it’s getting harder and harder to get authorization from our insurance company to test the girls and get the prescriptions here at home. The ‘scrips are for some pretty rare medicines… apparently this last one (the injections ) is only for doctor’s offices and I have to go in every day to the pediatrician to get the injection. HELL no. I told the geneticist’s assistant they had to figure out a way to make it work so I could have it at home. This is getting crazy. Every week I have to race down last-minute to get a new prescription or a new possible diagnosis THAT day. Then I have to wait weeks for the results.
I’m just so ready for this to be done. My new “normal life” goal is just to be able to avoid hospitals.