The implication of this saying lies on two fronts. The first being that the rain represents something "bad" happening and the "pour(ing)" represents that it's just getting worse. The second implication rests with the first word of the saying: "When". This implies that there are periods of no rain...where things are calm.
Lindsay continued, "It seems as though it's always raining, always a downpour around here."
We looked at each other and shook our heads. Our gazes locked in a silent moment of questioning disbelief. What is happening to us? To our family? To our lives?
Earlier that night Ava became sick; she threw up all over the family room couch while I had Henry and Ella on my lap--on the same couch. Thankfully Lindsay's sister and brother-in-law were here to help. Between the four of us we isolated Ava, Ella, and Henry. We cleaned up the mess that was made in the family room. We cleaned off Ava and got everybody in their own space for the night.
That same night Lindsay told me about a conversation she had with Ella's OT. Her OT said that Ella's hands were becoming more seriously affected by the SMA. She's losing function in them. As Lindsay told me this my stomach was doing flips...I was feeling sick. I couldn't do or say anything except shake my head...I didn't know what or how to feel. Lindsay knew exactly what I was going through at that moment...she's felt it herself. It's a helpless feeling; surrounded by anger and despair, hatred and desperation.
Ella keeps regressing...we so desperately want it to STOP.
Since Ella's stay at the hospital, she is markedly weaker. She's harder to hold and she struggles more to keep herself sitting up. She has to put forth more effort to move herself in her manual wheelchair. Often times she asks to be pushed instead. It's impossible to watch her get weaker day in and day out. Every time we think we have figured out something for her...it changes on us.
We have set up our house with all of the equipment and are in the process of creating routines and schedules. Everything is different now. Timing is of the essence. It looks like a hospital exploded in our house. Add to this the normal chaos of having three kids, a dog and two cats...and you have a constant state of disarray. We know time will serve us well in that a sense of normalcy will prevail---we long for that...but until that happens...
The reality of what our family is going through and how we, as individuals, are coping with it continues to beat on us. We didn't really have time while in the hospital to think about all that was to be our lives when we got home...even when we did get home and had all of the equipment strewn about the place, we didn't have time to bring the reality close to us. Now that the house is basically set up and we are able to stop for a moment and look around, we are faced headfirst with the emotional downpour that surrounds us. Like Lindsay said, "...it never seems to stop."
To put into words what we are truly feeling at this time is next to impossible. Our feelings are at so many different levels, different layers that overlap. We are pulled in so many different directions, and for the most part we have no idea where they are leading us. The uncertainty of the future alongside the struggles of the present make for an experience that defies explanation. We are beyond numb.
"It's not real" we tell ourselves...but it is. And it's slowly chipping away at us.
We go on with our daily lives, doing what we have to. We do the best we can, just like everybody else, with what we have.
