A different level of reality hit me this week...more like, ran me over.
Lindsay and I will be taking Ella to see Dr. Silver and his team at his MDA Clinic at Shriner's Children's Hospital in Chicago on Monday (10.10.11). This appointment was originally scheduled for February of 2012, but after some correspondance with Dr. Silver regarding Ella's regression, he wants to see her now. A hit of reality right there.
On Tuesday (10.11.11) we will be visiting Marianjoy Rehabilitative Hospital in Wheaton along with National Seating & Mobility to have Ella evaluated for a power wheelchair and possibly a stander. Wham...another blow.
On Saturday (yesterday), Lindsay and I sat with Mobility Works and discussed, in detail, the various options we have in terms of having a vehicle that will be able to transport Ella and the other two kids safely. Wow--the technology they have nowadays~~
While these three events certainly contributed to the "different level of reality" I spoke of earlier, they are not entirely responsible for my feelings of that reality...
The human spirit has left me in awe this week...
Watching and helping Ella go through her day. Witnessing the love and compassion that Ava and Henry show toward her. Embracing the moments as I catch a glimpse of Lindsay holding any one her kids in her smiling gaze, and them returning the love in kind. Talking with people who offer their insights, support, and love with each word they utter. Seeing firsthand how God is orchestrating a beautifully interwoven blend of people gathering around a child.
I cried this week...not for the fact that Ella is struggling with SMA, not for the fact that this devastating disease has entered our lives, not for the fact that often times we don't know what we are going to do from one moment to the next...I cried this week because I felt the enormous reality of how much people truly care...I cried in the knowing that God has brought to me this little child, stricken with a disease that will require everything I have to see her through it, yet has not left me alone.
I may never be able to describe with mere words this reality that stands before me. I can, however say that it is bigger than SMA.
Much bigger.
