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| Ella, Henry, and Ava~Summer of 2011 |
Lindsay and I will never forget this summer. When we look back we will most likely feel a sense of awe.
A sense of awe because we experienced incredible support, love, fellowship, and sincerity from so many people.
I go back to work on Tuesday. This will be my 11th year teaching 4th grade at Lincoln. It will be my 17th year working directly with kids and their families.
Family...
It's always hard going back to teaching after the summer. The days spent with my wife and kids becomes such a part of me...each year when I return I feel as if I am missing out on things.
Lindsay will have to once again take the reins and care for Ava, Henry, & Ella on her own during the work-week. This time, however, it will be different for her. More challenging to say the least. Ella is going to require much time and attention. Ava and Henry too, will require more from Lindsay. Our time together is more precious, now more than ever.
As we prepare for this transition we are feeling the reality of all that has come to pass over the summer. It is no longer a waiting game to find out what's happening with Ella. We now know.
We know that she has SMA Type 2. We do not want to believe it but we know it. We go through our days flooded with a mix of emotions and thoughts; some positive and some not-so-positive. We become sad, perplexed, and angry. We dance with the emotions of gratitude for what we have and despair for what we cannot bear to think about. Our conversations are filled with plans and ideas; bewilderment and confusion; many times while holding back tears as they well up in our eyes. It's a mixed bag and it is draining; physically and emotionally.
Sleep comes at a price. While our children rest, the quietness of the night enters our minds and our thoughts grow heavy with the reality, the severity, and the enormity of what is taking place and what is to come. It robs us of our much needed sleep, twisting its way through our very being and wreaking havoc on our individual and collective sanity. Once sleep overcomes us it is broken much too soon by the morning cries and calls from our children; beckoning us to go at it another day. We oblige thankfully and willingly; yet with tired bodies and minds. The love and laughter in their eyes and souls is what drives us onward.
Moving onward...
Ella will be fitted for orthotics this coming Friday. She will be getting shoes, leg braces, and knee immobilizers. All of this is in preparation for implementing a standing program for her. The best thing, physically, we can do for her now is to get her standing. Her muscles and bones need to bear weight in order to develop to a level that will sustain a healthy body. Her respiratory system will benefit from standing as well. This is critical for her survival. This we know and this we shall do.
Getting her vertical will also provide an emotional benefit for our 14-month old. For now she is trapped in a body with the functionality equivalent to a 6-month old while with the mind and desires of a 14-month old. She delights in any progress she makes; we see that every time she pushes herself up to a sitting position. We know that getting her on her feet will do wonders for her all around.
Ella will have her first Occupational Therapy session this week and her second Physical Therapy session, both through Early Intervention. These therapy sessions will be at our house. We have cancelled the private Physical Therapy sessions she had been attending for the past 3+ months in favor of the Early Intervention Program. We are excited and grateful that the professionals working with her have firsthand experience with SMA.
My returning to work will be an adjustment beyond what it has been in the past. The transition will take time to mold itself into the new routine.
We approach it with open hearts as we can only do~
