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| Ella Sabine Casten August 12, 2012 Diagnosed with SMA Type 2 (August 12, 2011) |
We looked at each other and said, "Now what do we do?"
"Summer of 2011"
No treatments.
No cure.
The past year has brought with it much--to say the least. To look back over the past 365 days and nights is difficult yet necessary. It promotes growth and helps us to embrace healing.
There are so many aspects of our lives that changed in light of the SMA diagnosis. Where to begin? The one place that holds all of the answers...
God.
From the moment we knew that Ella had this disease--to this very day--we have turned to and away from God. Our faith has been shaken. At times we fearfully and humbly approach our Creator in search of comfort; answers; guidance. At times we turn away from The Almighty in anger; despair; loneliness. We do believe, however, that in His wisdom lies the path we must follow and in His grace, compassion, and love for us we must trust.
Now where?
The dreams, the expectations, and the future that has changed...
We were just like any other couple starting a family. The past year has shown us without a doubt that "life is what happens when you are busy planning it"...in other words, we just never know what will happen...ever. There was the expectation that our kids would grow and become independent. We now face a lifetime of caring for our youngest on a level that we never expected. The way we set up our lives; emotionally, financially, and otherwise has now been altered dramatically.
And...?
The day-to-day of caring for our family...
Exhausting is an understatement. Quite honestly, we sometimes do not want to go to bed because we know that the next day will bring more of the same. Watching Ella suffer on a daily basis; watching her as she loses skills or struggles to drink water; hearing her cry because her head has flopped backwards and she hasn't the strength to right herself. Having to adjust every so often for the atrophy and strength loss she encounters. Trying to find ways to accomodate her needs only to have them change suddenly. Waking throughout the night worrying about her survival, our survival. Watching her sleep and seeing her body twitch, not from dreams, but from the disease that is claiming her life. Making attempts to give Ava and Henry the quality attention they so much deserve yet often do not get from us....and worrying about them. All of them. Constantly.
Which leads us to...?
Ourselves...
The toll that comes from having a child with a terminal illness is suffocating on many levels. Most markedly on an emotional level. We have armed ourselves with defenses to avoid thinking about what a terminal illness really means yet the armor is penetrable. When our guard is let down the sinking feeling in our stomachs then fill our whole body. Sometimes it makes one feel dizzy, light-headed in a way. Often times we have to remind each other to take a break, to let things be, to relax. It's not so easy, though. The combination of feeling the paternal responsibility and the compassion for another human being who is suffering, along with the witness of how they are suffering, proves to be too much. Take those emotions and add the physical drainage of lifting and carrying Ella; pushing and adjusting her; helping and guiding her movements, fetching for her and cleaning up behind her and you have a life that leaves little room for much else. Hence, we spiral into "ruts" that we feel have no end. It feels like it will never stop...even when it does, we will never be the same. Ever.
Taking us where...?
The kindness. The generosity. The love.
You.
All who read our blog.
All who embrace us.
All who provide us food.
All who impart to us gifts.
All who pray each day.
All who think of us.
All who relieve us at times.
All who donate to research.
All who donate to Ella's needs.
All who write us notes.
All who play with our kids.
All who work by our sides.
All who we've never met.
All who call us just to check in.
All who distract us when we need it the most.
All who wipe our tears on their clothes.
When we decided that we wanted to share our story with as many who would listen, we had no idea how those who did listen would also respond as you have. You have shown us that compassion, generosity, and genuine caring is what life is truly made for. We are a fortunate family to be surrounded, far and wide, by the love and care afforded to us. If not for you, young and old, near and far, we would still be asking ourselves, "Now what do we do?"...much of our strength comes from the collective love and concern that we feel.
Which leads us back to...?
God.
It always comes back to Him.
Ella came into this world through the grace of God. He placed in her immeasurable gifts. We can look at our lives right now and go on and on about how difficult it is and will continue to be...and while that may be true we can also say, without reservation in our hearts, that we are privileged to have been given the opportunity to be the parents to such a wonderful gift to the world.
One year has passed us by. We still have Ella with us. She is thriving, growing, and becoming her own person. She delights us with her playfulness, intrigues us with her intelligence. She amazes us with her adaptability, and challenges us with her needs. She dazzles us with her beauty, and fills out hearts with her sweetness. She entertains us with her humor, and loves us with her heart.
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