To me, to you if you are a mom, and to each woman who has taken the time to treat someone with love and kindness when they needed it most.
I’ve been trying to begin blogging again. Something will happen and I will want to share. Then, something happens that draws my attention away. Facebook has definitely killed a bit of the blogger in me. I can snap a pic, throw a caption on it, and upload it from my phone in about 10 seconds flat. However, there’s a lot lost in not taking the time to form complete sentences or thoughts. Facebook lends itself to quick segments of daily life. It’s good because it keeps people in the loop, but it’s bad because it keeps me from really discussing the things that are happening with us. Although, the reality of the situation is that it’s been just over a year since we moved into our new house… and for the most part?… we’ve been blessed by a very uneventful year. A year I think we all truly needed. The first four years of Alyssa’s life were… overwhelming… to say the least. HA! We spent time dealing with the big stuff and then when that calmed we weeded through the small stuff. Then, we hit “normal.” We hit a place where we had a day to day routine just like any family, even if it wasn’t a routine like any other family. Truth be told we kind of just coasted this last year.
The coasting did us well. There were a few speed bumps along the road. The largest of which was a medication mix up that landed Alyssa in the ER, but luckily we caught it soon enough that it was a quick fix. Her little neurological and immune systems are kicking so much tush! Thanks, in no small part, to regular chiropractic care. When she gets a cold now it is not a code red situation. She gets a cold and fights it like a typical kid and then we go about life like it was never here! Even when Neil got pneumonia (we have been together nearly 10 years and I’ve never seen him so ill) and passed the cold to her, it never spiraled to pneumonia!! She’s a tough little cookie and I am more and more proud of her each day.
As you float through life with one week running into the next you eventually hit a point of “WOAH! Where’d the time go?” and I think that’s where I am. I have a FIVE year old daughter. I still am adjusting to that 3 months into it. I feel like the time from her fourth to her fifth birthday flew by. Not in a bad way but instead in a good way that let us all relax. Along the way she’s grown to LOVE eating. I can’t get over how the kid who used to scream at the sight of a spoon can now down two pureed avocados in 20 minutes flat. HA! She’s also been blessed with an amazingly involved teacher and support staff this year. They more than made up for the lackluster (understatement of the year) teacher she had last year. My mother-in-law has been amazing since I returned to work. (OK she was amazing before that, but she’s really picked up the slack of me going back to work.) Alyssa is surrounded by love and care everywhere she goes and her bright and shiny attitude proves that daily.
I had been slowly working on a plan of action in the back of my mind over the last month or so. I wanted to plot some changes for summer vacation. Alyssa’s seizure meds haven’t really changed since she was 3 and I think judging by her breakthrough seizures we’re approaching the need to do something different. Her diet has been a bit “boring” for the last year and I wanted to work on introducing new foods now that she gets so excited about eating. She’s been spitting up more frequently again and my gut (no pun intended) tells me it’s from overwhelming her system with so much of the same food. We are getting allergy testing done at the end of the month to appease the GI. That is a REALLY long story that we will just skip and say that her next GI appointment may be her last with this GI… we shall see. So, long story short I was going to talk to Neil and my MIL about getting in gear this summer, getting out of coasting, and get to working with Alyssa to get her eating more variety, seizing less if at all, and working on her lower body strength. I just had to piece together a game plan.
Then, it happened. The final push I needed to get me in gear. We took my mom and grandmother out on Friday for Mother’s Day dinner. We’d all had a good meal and we went to leave. There was an obviously homeless man sitting on the sidewalk beside the restaurant and he asked Neil if he had any change. He didn’t but offered to go grab a grocery gift card out of the car. My mom overheard and pulled money out of her purse because she thought Neil was going to bring the guy to the car. Meanwhile Neil was talking to the guy while leaning on Alyssa’s wheelchair. When I walked up I handed the guy the money my mom had handed me and he looked up and thanked me sincerely. Then, he turned and asked Neil what Alyssa had. Neil replied “Incontinentia Pigmenti.” and the man said “Oh. It is just that she reminds me so much of my sister. She has Cerebral Palsy.” I said “Oh! Our friend’s daughter has that as well.” He got choked up and said “Yeah. She’s in a home. She really… she just didn’t even get to have a life ya know?” and the tears hit his cheeks. I said “Oh man. I’m so sorry. Things have changed so much though. This little lady has a happy life.” He looked at her and smiled through tears. I turned to Alyssa and said “Can you say ‘hi.’?” and she looked at him and smiled this big huge smile and you could see the joy fill him head to toe. We chatted a bit longer. We said our goodbyes and told him to have a great weekend. He just had the most genuine energy about him. Like, I’m sure there are people who tell stories to play for sympathy. However, this just wasn’t at all that type of situation. He’d gotten the money before the story telling. I left and just felt… blessed.
I felt blessed to be able to take my mother and grandmother out to dinner without worry that we’d not have a roof over our heads. Blessed that Alyssa was born in an era when people who were born disabled weren’t separated from their families. Blessed that Alyssa was a shining light in my life. She is so beautifully without judgment. She takes people at face value. I’d like to think I’d have raised a typical five year old who would smile at a perfect stranger in a way that conveyed “HI!” However, the reality of the situation is… so much of who Alyssa is has little to do with who we are. She’s this amazing person and we get the amazing blessing of fostering her little personality each day.
So, I think that Mother’s Day is as good a day as any to state publically that changes are in the works. We are going to work together in the coming months on the things that kind of went on the back burner as we coasted for a year. We are going to focus on adding new foods into her diet, weaning down to using the g-tube as little as possible (we won’t work towards getting it removed unless she learns to take meds without fighting. HA!), working on her lower body strength by adding in more physical therapy at home, and lastly working on it together as a team. Alyssa has a way of bringing us all together. We are going to embrace that and support her each and every day in every way we can. When she’s an adult? I want people to be able to say: “You know when Alyssa was a little girl… she had a life that was almost as amazing as she is!” After all, I’m not going to overshoot the goal and try to hit her level of amazing… that’d just be showing off. 😉 Here’s hoping I can get back in the habit of updating more than annually! HAHA!