I Almost Forgot

I almost forgot how rough life was before infusion. Okay so I didn't really forget. I remember being exhausted. I remember countless doctors visits, and driving a lot. I remember feeling like nothing and yet everything was happening. But what I did forget about was the fear.

Maybe I didn't realize it at the time. I was afraid all the time. Afraid of germs, afraid I could give the wrong dose, afraid I would miss a doctors appointment, I was even afraid I wasn't counting all the calories she was eating. You name it I probably was afraid of it. I've started to notice those feelings coming back. I'll tell you it's not helpful at all! I don't know how I lived like this for years I'm sure. Poor Trey what a mess he had to deal with.

After we started infusion these fears started to go away. Squeaker wasn't sick every single day. Which made me feel it was okay to go a day or two without waging war on every germ in my house. We weren't having to see a doctor every 2-3 weeks, which was very freeing. And then a few months in Squeaker started putting on weight, and I stopped counting calories.

Since it has been about 2 months without infusion slowly but surely the fears have been coming back. At work I constantly am cleaning my hands and my desk to make sure I don't bring any germs home. I worry about when I can get in to see the doctors, and I am paying very close attention to what and when she eats.

Thankfully this time around I'm recognizing the signs and how irrational it is. I can't make it all go away but this time, this time I will keep it in control. I will use everything I have to keep the fear at bay. I will rest, I will take time to relax, I will prayer for strength, I will voice my concerns to the family, and I will not let it run my life.

Survival

I See Blessings Everywhere
It is the only way I can survive. Life is hard. In the best of times life is hard. But you have to find ways to enjoy it. I like to look for blessings.

It's been about 6 weeks since Squeaker has had her infusion. She is having a hard time sleeping, and is achy all the time. Even with pain relievers and sleeping medication Squeaker has a hard time falling asleep, staying asleep, and wake early in the morning. The blessing in all this? It didn't start until my shift at work moved from 7am to 9am. 2 hours may not seem like a lot but when you are up until 2am those extra hours are very helpful.

Trey was slowly running out of his medications because our insurance hasn't kicked in yet. Sadly just a few days without his medication and the vertigo and headaches were coming back and fast. We just decided to talk to the pharmacy and see what cash prices we could get. Our blessing? That day a new discount card came out and we were able to get both medications, 90 days supply for about $60. Not as cheap as a copay but do able. Very do able.

Sunday night I was on the brink of tears. Just worried, tired, and stressed about how I was going to keep being a working mom. All I wanted to do was stay home and take care of my little one. I feared I wouldn't be able to do the job. Then to come home and take care of everything I needed too. I was worried sick. What blessing did I find you may ask? I realized as much as this may suck I had a job. A job that was close to home, with decent entry level pay, and allowed me to be home during the evenings so that Trey can go to school.

Without the silver linings life is dull, irritating and a pain. I have found that if I can find a few happy things, or blessing everyday then I can make it through. Because life is hard. I can't state that enough. But it is also amazing and worth getting up for everyday.

A Perfect Moment

Life has been crazy. I'm back to work, Trey is a stay at home Dad. Family birthdays, family visits, merging into a new household. Today was crazy all by its self. We cleaned bathrooms, vacuumed, argued, played, did laundry, went grocery shopping and even put all the food away. Tonight though there was a perfect moment.

A moment where all was calm and everyone was happy, it was the dinner table. We were slurping our spaghetti and just enjoying the company, and I realized how blessed I was. Squeaker, as messy as it was, was slurping spaghetti. 2 years ago she couldn't even eat spaghetti. She would choke and gag on it. We'd have to use another type of pasta.Thin noodles would get caught in her airway, but not anymore. All I could do was smile.

I then looked at the other side of the table and there was Trey. My wonderful husband. Who had helped me make dinner, clean the house, and run errands. He worked all day and ya know what Trey didn't need his cane. He hasn't a vertigo day in a couple weeks. Trey still gets dizzy from time to time and he still tires pretty easily most days but in general he is getting better. Again all I could do was just smile.

There is was a perfect moment. Life is far from perfect but those moments make it all worth it.

She's Given Them Up

     Squeaker officially gave up her bottles today. Yeah, Yeah, Yeah.... a 4 year old has no need to use a bottle, I am destroying her teeth by letting her use a bottle, 4 years old is WAY to old for a bottle how did you let it go that long? So this isn't a big deal, she is 4. Well guess what this is a big deal for OUR 4 year old.
     What makes it even more awesome is it was her choice. We've been working for months on getting Squeaker to give up her bottles. But to her they aren't just bottles. They are security. Taking away her bottles is the same as taking away a child's toy or blanket that they sleep with all the time. We didn't want to just rip it away from Squeaker. We were trying to use less and less bottles. We'd make her wait certain times before giving her more. It's been a struggle. But little by little it's been getting better. The last month or so we've been offering to buy her a new a new cup or bottle for night time. We aren't opposed to letting her have something to drink during the night it was just time to move on from baby bottles. Well today she did it.
     We were at Wal-Mart and I decided to take her by the water bottle section. Just to see if there was something she wanted. As usual she found a bottle she liked. I told her the deal was I would buy her the new Elsa bottle she wanted but she would have to give up ALL her baby bottles. Usually at this point Squeaker gives back whatever she has picked out. Then tells us she will stick with her baby bottles. Today she didn't. I checked with her several times. Making sure she understood the commitment she was making. I even said we were going to go home and throw out all her baby bottles. There was no going back.     
     Once home Squeaker wanted to gather up all her bottles and throw them out. We did and as luck would have it is trash night. She even helped me take the bag to the curb. And when it came time for bed she wanted her new bottle and we snuggled up. No fuss, no fight. She has even had one wake up so far. She didn't ask for her baby bottles, she just wanted a quick drink, fussed for a few minutes, and then back to sleep.
    I'm still in a little shock and awe of how quickly this happened. I mean it shouldn't, Squeaker has always been one that once she decided she was going to do something she did it. Today was the day she gave up baby bottles.
   Time to get back to work. Moving day is in 5 days!