It's six a.m. My husband is already gone for the day. All three kids are sleeping in my bed. (The only one who started out there was Lilli). Lilli is hooked up to her pulse oximeter; lit up red and green numbers blinking on the nightstand next to her. Even so, I keep sneaking in to check on her. I am already on my second cup of coffee; been up since 5.
I got up to say goodbye to Jasen, and I could go back to bed if I wanted to. But I know I would not be able to sleep. I'm currently in a vicious cycle of caffeine and anxiety. I have been mentally spiraling down in the last few weeks. I think what started it was the fact that the new nurse did not show up for three days. So I called the nursing agency and said, "Hi, I don't want that nurse anymore, I can't depend on her." We temporarily did not have a nurse. No biggie. But as a result of my calling the caseworker about something else, she saw in our file that it was time for a review. Another nurse came to the house to evaluate Lilli and re-assess her. We are one of those families that kind of "falls between the cracks," I guess. The results of the re-assessment? We do not qualify for nursing help anymore. The reason why? Because we have a new caseworker. The last caseworker took time to hear my story; the details that don't get put on paper in official black and white. She was a mom. She was compassionate. I know some people with more needs than our family might read this and get irritated. I know there are families with much greater medical needs that we have. We are blessed. Lilli is not on a ventilator. She does not have a g-tube. My caseworker just had mercy and granted the nursing care for us because I explained Lilli's uncontrolled seizures, and I needed help. She told me we technically did not fall into the right category for nursing care, but she had the power to grant it to us anyway.
Having a nurse this past year changed my life. It was not a perfect situation by any means. But now that we do not have a nurse anymore, I have to re-think how I do things. The biggest change is my constant mental state of having to be alert and aware of Lilli's needs. I miss that mental break. A good nurse in home health is a rare gem. I learned a ton from our experience. But now, it's back to no nurse. It is one year later, and a lot of things have changed. We have the ipad now. We have an ABA therapist. Josh and Chloe are just now getting to the age where they play with each other. Chloe can take care of herself more. There are a lot of good things that have happened in the past year that I can be positive about. Writing about it helps me to focus on the big picture and see the good with the bad.
I can appeal the decision and plead my case to try and get nursing care back, but honestly I don't know if I have it in me right now to file all sorts of paperwork and drive two hours for a hearing. It seems as though our chances are slim. I have not decided what to do yet. Perhaps I never should have been granted that privilege in the first place, but I am a better mom now because of that caseworker's decision to help me out. I have ten days to decide and respond in writing about an appeal. In the meantime, I have to deal with what is happening right now, and what this change means. It means that I have to take Lilli with me wherever I go, which is no small deal. But it will be OK.
I have to carefully calculate our outings. Any small trip outside the home has the potential to become complicated and stressful with Lilli. We cannot take Lilli some places because of triggers that set off her seizures. We cannot go out at mealtimes or for too long because of Lilli's endurance level. Sometimes Lilli cuts the trip short by wailing loudly. But sometimes, it's just as challenging to take my two year old out in public. I am way too stressed out about things that might or might not happen. I have been wearing myself down into an over-emotional, exhausted pessimist. Each outing by itself is no big deal. But after a whole week of having anxious outings, I was kind of an emotionally threadbare mess. I want to try and see the positives in all of this.
I think my anxiety of going places is real, and has roots that stem back to when Lilli was a toddler. Most outings were incredibly stressful with baby Lilli. I was a new mom, she was my first baby, and she had special needs. Nothing was easy. I was incredibly paranoid because of her seizures, choking, medicine doses, irritability, and other factors. I was also chronically sleep deprived for many years. Now I guess I'm not "chronically" sleep deprived. Just regular sleep deprived. My personal definition difference is based on the number of times I am awakened at night and for how long each time.
Now that Lilli is older, the factors have changed. But going out in public is still very stressful for me. To an outsider, it may seem like no big deal. But to an outsider, each outing is a separate thing. I'll try to act like I'm a different person and look at my situation objectively.
…So Lilli cried the entire time we were in the grocery store, so what? Lots of kids do that. Think of all the moms who have toddlers screaming and losing their minds in the checkout line next to the candy display.
… So Lilli cried most of the time that we were in the dollar store, so what? We were only in there for twenty minutes. Big deal.
…So Lilli sobbed at the library and Morgan had to whisk her out, and I could hear her wailing out in the hallway while I tried to hurry Chloe up to check out her movies…no big deal. (Ok, no, that was disruptive and stressful.)
...So I could not take Lilli and Josh to the playground while Chloe was in dance class because there were so many kids I was worried I could not keep track of both of them, not a big deal, right? Lilli would just walk away into the road and never look back. Josh would run to the edge of the soccer field in to the woods and never look back. No playground for us. (I took them for a short walk instead, and Lilli cried.)
…So I had to drive a half hour through pouring rain and traffic to speech therapy, and when we got there I had to keep Lilli from repeatedly touching a stranger's face and keep Josh occupied while we waited for 15 minutes for the therapist, it wasn't the end of the world. She didn't cry for very long.
The thing is, all of those things happened just last week. That was a typical week. Almost every time we all went somewhere, even when I had Morgan's help, Lilli cried and made our trips stressful and short. At the grocery store, we never made it to the dairy section. Halfway through the frozen section, I said "Ok let's go." She was so upset that it was making me upset, so we left without milk and eggs. Then when we got home I stressed about when I would go back and get the milk and eggs.
Having a nurse meant I got my grocery shopping done without interrupting Lilli's ABA therapy at home, and I could focus on two children while two other people were focusing on Lilli. Lilli was not there, crying and anxious the entire time. I have thought about this, and wondered why I get so anxious when I am out with Lilli. I asked myself if I was embarrassed of her. Really and truly, I am not embarrassed by my daughter. I am not ashamed of who she is. I am proud of her and I adore her. But when Lilli is anxious and upset, I get anxious and upset. An ordinary errand turns into a "hurry up and get this done and let's get out of here." This is really typical when you have a two year old. I went through it with Chloe, and now we are done with it. I'm going through it with Josh right now, and I know it will pass soon. But it has always been like this with Lilli. As she gets older and taller and stronger, it makes me even more anxious.
She has gotten better at outings. As long as I have another adult with me and a bag of cheesepuffs, we can make it for a little while. We try to prepare her mentally for the errand. We avoid certain loud, overwhelming stores. I make a list before we go, and we make a "game plan." We get in and try to get out as fast as possible. Once on a trip to Target, Morgan told me I should be on Youtube. I had all three kids in one of those kid carts with two booster seats. I literally ran while pushing the cart up and down each aisle, whisking things off the shelves. I barely slowed down to grab stuff. It was drive-by shopping. I almost ran a woman over and had to apologize profusely. When I write stuff like this down, I realize I must have lost more marbles than I thought over the years. I prefer to call it "Preventative Parenting." Like I am getting my shopping done quickly before someone has a total meltdown. It makes it sound so much better than "Paranoid, Sleep-Deprived Anxious Shopper Mom Hyped-up on Caffeine and Dangerously Running with a Cart Filled with Three Kids."
So I lost nursing care, no big deal. I still have Morgan, Lilli's ABA therapist. And she's better than ten nurses. Any parent in my situation would do back flips to have any help at all, so how can I complain?
The positives about not having a nurse:
I won't spend as much money.
My kids won't get to see things they want at Target and whine about wanting them (because they will only be seeing a blur as we zip past).
I might be able to call running with a cart filled with three kids and groceries "exercise."
There's no time for me to look at frivolous house décor and waste mental space thinking about the pointless possibility of "window treatments" and useless bowls filled with silly decorative balls.
We will never go to Toys R Us because Lilli hates it – too overstimulating (not going there is a definite positive in so many ways.)
I will be forced to plan meals ahead of time and write specific grocery lists (a money and time-saver in the long run.)
I can't think of a positive about not going to the public library. But my library is so awesome, they actually have a drive-through window. I can reserve books online, drive over there, and a nice lady slides open a window and hands them to me with a smile. (She might be smiling because we are not actually coming inside the building to disrupt the peace, but whatever.)
And the biggest potential positive? I will gain wisdom. I will depend on God and not myself. Because I simply cannot do it all. I will be constantly reminded that everything I have in life is from the sheer grace of God. I will be more thankful for every blessing, for any small help and any moment of peace I am granted. It is true, having less makes you more thankful for what you have. That is true with material things, but it is also true of time, and help from others. When things change in life, a person can either be bitter about it, or gain wisdom. I am no Pollyanna, believe me. But I will not choose to be bitter. I will be thankful for what I have. As for my anxiety level, I know I need breaks. This is a break right now. I am thankful I can write. I can start my day feeling good from getting all of that out. Thanks for letting me share.