Tomorrow (11.12.11) marks exactly three months since Ella was officially diagnosed with Spinal Muscular Atrophy.
It's been quite the ride so far, even though we've barely scratched the surface of our new life with SMA. Many ups and downs (but definitely more downs than ups). SMA (and everything that goes with it) has completely taken over our lives.
It's hard to imagine getting anywhere close to what our "normal" used to be, when it seems that every time we move closer to acceptance, we get knocked down again.
This week it's Ella's fingers. Her PT has noticed that her index fingers have been becoming hyperextended over the past month or so. Her OT took a closer look this past week and said that it's because her hands are becoming weaker, thus causing her ligaments that hold her joints in the proper alignment to become loose. After feeling the joints in Ella's index fingers, her OT said that her joints are already misaligned and will only get worse until the they ultimately become dislocated. At the top joint of her index finger, the tip of Ella's finger is almost always pointing down, and if she is unable to gain the strength to hold it straight, it could develop into a contracture (become stuck in the bent position).
Ella will most likely need custom hand splints to wear when she sleeps to help correct this problem. For those of you who know our Squishy personally (and have been "charged" on), you can probably guess how much she's going to like wearing hand splints that prevent her from sucking on her fingers :(
Here is a video that we took during OT this week to send to Dr. Silver (her neurologist), showing her "swan neck deformity" that is developing in her index fingers.
Despite the many discouraging days that go along with SMA, I feel like I've grown and changed so much as a person in this short amount of time. As a mother, as a wife, as a daughter, as a sister, as a child of God. My priorities in life have shifted significantly.
I'm really beginning to see what's important in life. Truly important.
It's not our house, or our car. It's not the clothes we wear. It's not how much (or how little) money we make. It's not the things we're able to buy (or not buy). It's not the little disagreements we have with each other, our loved ones, or anyone else. While these things play a role in our lives, they're not what matter most.
Live and love.
That's what it comes down to. Living life and loving each other. Life is not all "cookies and flowers" (how I used to describe myself to Michael). There are ups. There are downs. Some people have larger ups and downs than others, but we all have them.
While we think of a "lifetime" as being forever, life is actually pretty short. Especially when you think you have it all figured out.
But the truth is, no one knows what tomorrow will bring. We can sit here and plan all we want… plan for the Christmas season, plan for a trip next year, plan for a new house and/or car, plan for our kids' college tuition (ha!), plan for retirement. But the bottom line is, if we don't live for today, we're not really living.
Three months. When you think about it, it seems like such a short amount of time, but it's felt like an eternity to us since Ella's diagnosis.
I've reached a point where I have to decide if I'm going to focus every piece of my being on how devastated I am about our Squishy, or if I'm going to try to start moving forward. Accept the cards we've been dealt, and try to live life to the fullest. Easier said than done, I know, especially when we continue to receive discouraging news.
But what would Ella want? I don't think I have to wait for her to be able to speak the words to me. I know exactly what she'd want.
Everything that happens (or ever will happen) is all part of a plan. Not my plan or yours, but His plan. One day we'll understand, but until then, what we have to do is very simple.
Live and love.
Focus on the many blessings in our lives (we ALL have them, even when they seem hard to find sometimes).
We'll still have some adjustments to make. Physical, emotional, spiritual, social, financial. It will probably take a lifetime to truly "accept" what is going on. It's not going to be easy and I'm sure we'll have setbacks.
But this is our new normal. Having good days and not-so-good days is what our future will be about for the rest of our lives. It's not what we planned. But it is what it is. It's not worth wasting time trying to understand or change things. It's not worth wasting what precious time we have on being angry and upset.
I'm going to try stop questioning "why" things are the way they are and instead start trying to do what I AM able to do…
Live and Love.
