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| Ella & Ava waiting for Mommy to come home... |
Lindsay has been officially discharged from Linden Oaks...
I've been Mr. Mom for the past 4 weeks. I've walked a mile (or a month) in Lindsay's shoes. I've seen a side of SMA that I knew existed yet it eluded me in its full force. No longer does it elude...it has been thrust right in front of me and there is no way around it...only through it must I go...we must go.
I've been Mr. Mom for the past 4 weeks. I've walked a mile (or a month) in Lindsay's shoes. I've seen a side of SMA that I knew existed yet it eluded me in its full force. No longer does it elude...it has been thrust right in front of me and there is no way around it...only through it must I go...we must go.
Taking care of Ella day in and day out has become a central part of me these past weeks. The more time I spent doing it the more immersed I became in the world that is SMA. Yes, I had been part of this dismal world since her diagnosis, but these past weeks have brought something that is somewhat indescribable; something different about how I feel about her, it, and everything.
My moments were filled with keeping track of three children. I anticipated Ella's needs as well as those of Ava and Henry. SMA presents physical and emotional challenges for both Ella and me; and our entire family. Every step of the way I had to be aware of the surroundings, the atmosphere. I had to find ways to help her be comfortable and independent. Between the g-tube feedings, diaper changes, playtime, nap time, meals, laundry, cleaning, personal things, and spending time with Lindsay my days would whiz by in a flash and I can only catch up to myself in a heap of tiredness and exhaustion; an exhaustion that feels abnormal. I welcomed the sleep as it came during the night. I have learned to wake myself up in order to turn Ella, or pick Henry up off the hall floor and get him back into his bed (he's been doing that lately?!), or stop Ella's overnight feed and clean her feeding supplies. These overnight responsibilities only take moments. Thankfully Lindsay is home overnight to help with this part as we take turns.
The aspect of SMA that I have now experienced is the constant fight it presents. As much as one does to battle the disease, it keeps punching back, robbing Ella of her body; taking away so much so quickly. Spending almost every moment with her; caring for her, feeding her, toileting her, bathing her, placing her in bed on her machines, playing with her, explaining new things to her, doing exercises with her, transporting her, taking her to therapy, disciplining her, and loving her is the greatest gift I have ever been given.
Watching SMA relentlessly do its dirty work has hit a chord within my soul that has been silent for many years. A chord that rings loud and clear for strength and courage to come to the surface. A chord that plays the melody of seeking out God to carry us through. A chord that is clearly a part of a bigger song than the song of my own life...for the song of my life is simply a part of a greater symphony.
As SMA takes hold of her muscles and as I watch despite my efforts to protect her from it, the chord of strength and courage is the one I know I must listen to...I know it rings loud and clear yet right now I can only hear it faintly in the distance of my mind. It may seem like an easy task to open up and let the chord ring loudly--yet through the influx of all that encompasses SMA and its terrible agenda it has proven to be more difficult---especially now that I am witness to all of it.
I must trust He will.
