Friday, July 15, 2011

Birthday Girl!

You know I wouldn’t miss updating you today. Baby girl is 3!!! Yes, three!!! To think we are here at this point is fantastically unimaginable. Praise the Lord, Alyssa is stable, happy, and very much an essential part of our family. But you know all that. What you may not know is that this is the year of transition for Alyssa and it frankly it already has been such for our entire family.
Once again I find it difficult to fully express the deep sense of appreciation we have for the early intervention services (birth to age 3) provided through (mainly) the Cerebral Palsy Association. Their services came to a close this week. This means the PT, OT, teacher, and clinical nurse that have worked with Alyssa pretty much since she was an itty bitty butter bean bid her a fond farewell. Not only did they treat Alyssa, but they were so supportive of our family~ helping me to grow as a special needs mom. They were great listeners, provided guidance, support and more. Most importantly though the left me {us} with the sense that they each truly cared for our girl; that above all else has been meaningful.
Not one of them placed limits on Alyssa’s abilities or potential but challenged her and encouraged her to move forward and work hard. God was good in providing each of these individuals in Alyssa’s life, because not all therapists, clinicians would facilitate the needs of a baby-toddler (whom isn’t expected to be much by definition of her diagnosis) in such a resolute albeit loving manner. It went beyond just doing their job; they made me feel like they genuinely wanted to set in motion the thought rather the action of Alyssa can do and will do…truthfully they did just that. These ladies came into our home weekly, and participated in helping to make Alyssa stronger, taught her how to play, and manipulate toys etc. They did with Alyssa many of the things doctors told us she would never do! It wasn’t a concerted team approach outlined with goals and a treatment plan that made the difference; no these are amazing therapist, women who have cultivated approaches that in meaningful ways with personal style did promote growth-strength in a child {and family} beyond expectation. Thank you Kris, Patti, Francis, Kim and Robin more than words can say THANK YOU!!!
We could foolishly focus on the “failures” of Alyssa’s body and mind giving way to flawed notions that Alyssa is less than because she isn’t the emblematic 3 year old. Alyssa doesn’t talk like a typical 3 year old; she babbles like a 9 month old. On her own Alyssa doesn’t sit up for very long, and can’t stand, she needs support to do these things the average 3 year old would do. Unlike many other 3 year olds, on this her birthday she won’t tear through the wrapping paper to see what gift lay in wait; rather with expectant eyes will watch her siblings do it for her or with hand over hand assistance try it herself. To dwell on what could have been is a waste of energy.
We’d rather celebrate the gift of a daughter whom Christ is using to teach us faith, humility, compassion, patience, courage and most of all love. (Psalm 25 1-2,4-10) We will celebrate her engaging smile, joyful personality, and her squeals of delight. We will sing with her, play and in the end enjoy all the nuances that make her dear to us. In three years Alyssa transitioned from a newborn labeled incompatible with life, to an infant hospice care patient destined to die; to a medically fragile baby in need of multi disciplinary services; into a medically involved toddler and now a special needs pre-school child. As a Pre schooler, she will receive services through our local intermediate unit. This means new people to impress *wink*wink*. One thing I am learning in this journey is that your child has to have a willingness to prove herself to others, and Alyssa does. Alyssa will need to show her stuff to this new group of supporters and again break the preconceived notions attached to her diagnosis/cognitive level. I will at another time explain the particulars of how preconceived ideas affect a child with cognitive and physical issues. In the meantime; Folly has no place here, she is busy trailblazing and we are busy trying to keep up.
Today some people will assemble in eagerness for a fictional story about a young man who may or may not “save” his “people” from the evil that surrounds them. There are those who celebrate this fictional young man for his remarkable character; they revere his power and abilities even though throughout this illusory tale he is shown to be faulted; at times selfish and short sighted. I admit, I too have taken pleasure in the entertainment of the unfolding fairy-tale as it is quiet a story. Today chronicles the end of his journey whether he succeeds in saving his people or not his story ends. Anyone of us can witness the recounting of this story for about 10 bucks or so at the local Theater.
Today Alyssa’s birthday can highlight another story. A true account, the story of Jesus; for His power, His goodness, and abilities are evident in her miraculous life. For FREE you have already witnessed what Jesus did and benefitted from His saving grace. He saved His people and throughout his journey remained faultless, caring, and inspired notwithstanding He died so that His people could live and yet his story continues. As we celebrate Alyssa’s birthday, I cannot ignore the fact that God the author of life continues His story through every breath she takes, and every memory we make and in every heart that chooses to embrace in faith what is. What is, is this: I praise the God of grace; I trust his truth and might; He calls me his, I call him mine, my God, my joy, my light. “Tis he who saveth me, and freely pardon gives; I love because he loveth me, I live because he lives.” ~ Horatius Bonar
By the way Alyssa is now a whopping 28lbs is 2’ft 7” tall. She is wiggly and giggly. Today of all days she has started with a summer cold (sneezing runny nose) Please pray that she overcomes this easily and quickly. Alyssa is a few weeks away from her major (VEPTR) back surgery (to correct her scoliosis) and we really don’t want to have to reschedule or have any other unnecessary complications. I will be able to update more as August approaches. We thank all of you who continuingly keep Alyssa in thought and prayer. Love to you all from Alyssa and all of us!!