Imagine a burlap bag.
It's being filled with cotton.
The cotton is soft, it's light, it's squishy.
Imagine more and more cotton being placed into the burlap bag. The incoming cotton seems to meld with the existing cotton already in the bag. The "old' and "new" cotton become one, each allowing the other to coexist.
Now imagine the burlap bag, with the cotton inside of it, beginning to fill to capacity. More cotton is introduced and it becomes more difficult to fit in the "new" cotton. The burlap bag begins to stretch to accommodate this influx of cotton. The cotton itself becomes pressed for space and is losing its softness, changing rather, to a hard clump in an effort to exist. More cotton is being added and the burlap bag begins to stretch to its ultimate limit. The cotton is no longer soft and fluffy...it is hard and unyielding. More cotton is being stuffed, forced into the bag. The seams of the burlap bag begin to stretch, desperately trying to hold itself together under the pressure of the cotton within. Day after day, hour after hour, minute after minute...
Sometimes there is a reprieve and some of the cotton is allowed to escape, providing a temporary respite for the burlap bag. Of course, more cotton awaits and will find its way into the bag.
What will become of the burlap bag? When, if ever, will the cotton stop being jammed relentlessly into it?
The pressures that surround our lives often feel like the scenario of the burlap bag and the cotton. We find ourselves in the midst of perpetual stress. The demands placed upon us have become commonplace; part of our daily lives; nonetheless they tax our reserves of patience, compassion, and sometimes good judgement. We look to each other for strength knowing that the other may not have it readily available at that moment.
Caring for a person whose muscles are slowly fading away has proven to be exhausting...physically, mentally, socially, and spiritually.
Knowing that, unless the medical community finds treatments or a cure for SMA, we will spend the rest of Ella's life providing not only what parents normally provide for their children, but also providing her a means to manipulate the world and her movements as well.
Wondering what will happen, how to get through one more day of exhaustion, and trying to reconcile within our own minds any guilt, lack of control, or reasons for the plight that has been given to our daughter saps mental energy quickly. The mind wanders, dreams lurk, reality begs an answer.
Seeking time with others, friends and family, brings with it a logistic puzzle. We are fortunate to be surrounded by people who are sensitive to Ella's needs; helping in so many ways. Ella loves to visit people and go places which tells us that those around her care deeply about her well-being.
Before Ella was born we were led to a church community that has brought comfort, support and friendships. The love and kindness shown by those who surround us brings meaning to our lives in untold ways. We have found ways to seek the guidance God provides and to allow the words of Christ to breathe the breath of life into us. While we do not understand the ways of the universe, or the circumstances that surround us, or even the reasons why they exist, we are thankful for the opportunity to spiritually grow within the context of the life we have been gifted. To shake a fist at the Almighty may be something we engage in, yet we know that He loves us and our dear Ella, Ava, and Henry.
So our burlap bag seems to be perpetually full...bringing the seams therein to the point of last resistance. We go on, each and every day...we know not how. We go on, day in and day out, despite the challenges that SMA brings to Ella.
We go on...physically, mentally, socially, and spiritually; with a deep desire to care for our children.
