I always try to write during moments of clarity, and I try to avoid writing in the middle of the “storm.” Sometimes the “storm” lasts a little longer than expected, and though it may be very tempting to spill all my emotions here, I try to wait until the “storm” passes, so I don’t worry my family of my mental and emotional well being. 🙂 I have endured a few “storms” in the past year, but who hasn’t. It is all relative to our life and our experiences. I have learned it is not how severe the storm is or how often they pass, but how well you are able to adjust yourself to maintain standing.
I wouldn’t say the past week has been a “storm.” Maybe, the past week has been more comparable to scattered showers. These few weeks have been filled with a few set backs, but with moments of SUNSHINE peeking through.
The scattered showers all started with Benjamin’s collapsable lung. This is something we fight frequently, but this time, the collapsable lung is a little more … collapsable. Just when I see the sun peeking through, another shower follows and the lung closes again. If this is all I had to endure, it would be a piece of cake. Unfortunately, life takes me away from doing the important and fun things for Benjamin, Lennon, and Isla, and the showers begin.
I try to stay on top of our paperwork and medical bills, so I made a call to Medicaid about some paperwork we have yet to receive. After multiple curious questions and many moments of silence, the woman told me that Benjamin was listed as a “surviving dependent.” I told her he is definitely my dependent, but she quickly replied, “well, you’re not dead are you?” Interesting, so now I am listed at dead. She said she will have to get back to me on this one… I am sure she will. We will have to see how this turns out since it has been a week and no reply.
Next, our DME company called to let us know that our insurance pays around $20 for an $130 trach. We currently receive four a month, and change them weekly, but the DME company mentioned that some people change them every other month. Well, we will not be changing them every other month. It was also mentioned that maybe there is a cheeper trach. Are we really looking to skimp on something that keeps my son alive? Oh my.
Benjamin started speech again this week at Tulane after being off a few weeks due to illness and his therapist being out for family issues. It is obvious how much Benjamin benefits from Speech and Vital Stim, because he really regresses when he is off. He is swallowing and vocalizing less in and out of his sessions. Benjamin did lick on a few pretzels and loved the salt. He had a much better reaction to this than to sweeter food items. (Isla was also at therapy and was treated to quite a few pretzels.) On a really good note, Benjamin has started signing this week. We consider this his first word. With almost 100% accuracy, Benjamin signs “more” when he wants to continue an activity and signs a modified “all done” when he is over it. It is hard to accept, but I know that vocalizing words and sentences may not be Benjamin’s primary mode of communication. Though this can be disappointing, knowing that he will be able to communicate by signing or by using a communication board is wonderful. SUNSHINE. We will soon be starting the process for Benjamin to be assessed for appropriate communication devices.
In OT, we placed Benjamin on his hands and knees in a crawling position. His head needs full support, but when I would try to lower it, he would push briefly through his arms. (Ignore his hair in the picture) I know Benjamin will not be able to maintain this position on his own, but seeing this little push through his arms was awesome. SUNSHINE. We have also been playing ball, Benjamin is able to kick the ball when it is placed by his foot, and he will push the ball off his lap with his hands. He loves this and smiles so big. Lennon and Isla do a great job of playing ball with him. SUNSHINE.
Next, we lost our main nurse a few weeks ago, and have started with a new one. I am very careful about making sure they are 100% prepared before I leave them, so I have been tied to the house. I love staying home with Benjamin, but being unable to leave him makes taking the girls to school and getting to the grocery store very difficult. I am getting better, but throwing Benjamin in the car to make a quick trip can be a little frustrating and tiring. There is no such thing as a quick trip. My plan after Easter is to get everything together in time to get Benjamin’s morning routine completed, girls dressed and packed for school, and in the car ready for school and Mass by 8:00. I need a challenge and this will be one. I like to be independent so depending on others gets very frustrating. I just need to know I can do it on my own.
Lastly, in the back of my mind is knowing KC leaves after Easter for Baton Rouge for three months. He will be in Baton Rouge for a total of 9 months (in three month intervals) until next July. Even though I have great support from my friends and family, this is an overwhelming thought. I am not only going to miss the extra help, I am going to miss my best friend. I hope this year flies by, as we are finally closing in on KC finishing his residency. I couldn’t be prouder. SUNSHINE
I know I can sound deliriously optimistic at times, but I don’t every want to give people a false image of myself. I know for myself, reading other books and articles by deliriously optimistic people, made me feel inadequate. I felt as though I was missing something whether it was clarity, spirituality, prayer, or sometimes I wondered if they were on an artificial substance. It took me some time to realize that an optimistic person isn’t always optimistic. An optimistic person is able in time to let the positives outweigh the negatives. Optimistic self-help books are never written during “the storm.” These books are written after the storm during the SUNSHINE. Optimistic people are capable of seeing the SUNSHINE and this is where I feel I am. I try not to dwell on the overwhelming moments where I find myself having a Mommy Timeout outside, driving around tears (only time I am alone), or down to the point where I don’t even want to clean my house. I am human and these moments happen for me…for all of us. Optimism isn’t seeing a glass half-full instead of half-empty…optimism is being able to fill that glass back up. I look at optimism more of a verb than an adjective.
I was mentioning to a friend about a day that I removed every piece of baby equipment from my house. Benjamin’s posture was too poor for a baby swing, he was unable to hold his head to use an exer-saucer, and had too little control anywhere for a bumbo seat. On this day, in a moment of weakness and frustration, I ditched it all. She said she felt better knowing I was human and not always optimistic. 🙂 Though I was very flattered, I never want to give the idea that I am always smiling like a jack-o-lantern. That is what made me feel inadequate reading other books and articles. I have my moments like we all do, I just prefer to focus on the SUNSHINE.
On a funny side note…As I am writing this, Lennon and Isla are in time-out in their room for fighting. After a few minutes in there, I hear their radio turn on…to Cuban rap music. You just have to laugh. At least they can’t pick up anything bad from music they can’t even understand.