Friday, February 27, 2009

You are loved

Dear Evan

I can still remember the first time I saw your face. It was like I had just found the final piece of a complicated puzzle. You were no stranger to me. My spirit knew yours and I knew that you were meant to be my son. I could not wait to hold you in my arms and tell you how much I already loved you.

Some people said that you were lucky to have us. But I knew, from the very first moment that I met you, that they had it backwards. WE were lucky to have you. You see, you have changed our lives and our hearts completely. You have given us new perspective. You have filled our days with joy and sunshine. You have made us want to be the best that we can be every single day. Your courage, determination and resilience has shown us that there are no limits to the things that WE can do. Your smile, your laughter and your zest for life, lights every corner of our lives and we are forever changed.

Yesterday, as I walked you out to the bus, I realized that it was not only our lives that you had touched, but the lives of everyone who has the privilege of knowing you. You see, Ms. Bonnie (even though she has not been able to drive her bus this week because of a hurt ankle) followed the bus to your stop today so that she could give you a gift and a hug before you leave for surgery next week. Ms. Lana was there too and she and Ms. Bonnie brought you this gift together. When you came home from school, your wheelchair was weighed down with more gifts and well wishes from your teachers, your aides, your therapists, your bus drivers, and your friends.

As I looked at all of the gifts that you had been given, as I visually took in just how much you are loved by everyone around you, my heart was filled with joy. My cup runneth over. And as I sat there with tears streaming down my face, I knew that, those who had given those gifts, that all of those who would be praying for you and wishing you well, had been touched just as deeply as I have been, by your presence in their lives. I realized then, that, they too, are forever changed because of the beautiful person that you are.

You are loved, Evan. You are loved.

Friday, February 20, 2009

"Look what I can do!"

Joshua using his walker. Crawling is still his preferred mode of transportation because it is much faster, but now that he has discovered how fun it is to "crash" into things, he is using his walker a lot more!

Evan uses a mouth stick to count and sort and to press buttons on the computer. Here he is counting the teddy grahams for the valentines that he made for his preschool class.

Evan LOVES to play with cars. Occasionally he will sit and use his hands to play, but when he REALLY gets into it, he will lay down and use his mouth. Note how well he uses his mouth to maneuver things. Also note how he uses one hand to move them other when moving the cars into position with his hands. It really is fascinating to watch him!

This is Joshua.

(You want to eat him up, don't you? Don't worry, he has that effect on all of us!)

Joshua was born with multiple limb differences. Doctors have been unable to pinpoint a specific diagnosis for Joshua's condition because the characteristics of his disorder do not fit neatly into any one diagnosis. Several theories include femoral hypoplasia (without unusual facies), proximal focal femoral deficiency, caudal regression, and sacral agenesis/dysgenesis.

His laundry list includes the absence of both femurs as well as the fibula in his left leg, absent hip sockets (his legs are held in place and supported by soft tissue only) a misplaced left scapula, his left arm is 3/4 of an inch shorter than his right, sacral agenesis (partial absence of sacrum (he is completely missing his coccyx also known as the tailbone), and sacral dysgenesis (the part of the sacrum that does exist is malformed). Fortunately, many of the problems that are associated with sacral agenesis/dysgenesis (and/or caudal regression syndrome) such as neurogenic bladder are not currently present (although a urologist monitors him closely). Unfortunately, we have very little history regarding his birth mother, her medical history or her pregnancy and so determining the cause of his condition is almost impossible. Our best guess is that his mother may have had untreated diabetes during her pregnancy which can often cause these types of deformities (there is very little prenatal care in the more remote parts of Uzbekistan, so this theory is probable).

We brought Joshua home from Uzbekistan when he was 10 months old. At the time he could not sit unsupported and would roll to get where he wanted to go. He now sits completely unsupported (he does not even use his hand(s) to balance), can crawl at lightening speeds, can climb up and down stairs and can walk with assistance.

Five months ago he was fitted for a prosthesis for his left leg (which consists of a tibia, ankle and foot). The prosthesis slides on over his existing leg, held in place by a strap that wraps around his waist. This prosthesis evens out his left and right legs making it possible for him to stand, cruise and walk. With the aide of a miniature walker (or mommy), Joshua is also able to walk.

Quite frankly, the only special need Joshua really has is that he is shorter than your average two year-old. I have found that this isn't necessarily a bad thing. For example, while he may be able to throw things into the toilet (a favorite pasttimes of his), he is not tall enough to reach the handle to flush, thus saving me many a phone call to the plumber!

Truthfully, there is nothing that Joshua cannot do. He is possibly the most stubborn and determined child I have ever met and because of that, I am excited to have a front row seat to all of the amazing things he will do in life!

(If you are wondering why I don't have as many pictures of Joshua. . .it's because he never sits still!)
This is Evan.

Evan was born with a condition known as Arthrogryposis Multiplex Congenita. The word "arthrogryposis" comes from the Greek derived "arthro" (joint) and "gryposis" (crooking). The terms "multiplex" (multiple or many) and "congenita" (existing from birth) are Latin derived. Losely translated, the term Arthrogryposis Multiplex Congenita means "many crooked joints at birth."

Arthrogryposis occurs in 1 out of every 3,000 births and and is a term used to describe more than 150 different syndromes and conditions. The most common form of arthrogryposis is amyoplasia (this is the form of AMC that Evan was born with). Amyoplasia is a generalized lack of muscular growth and development.

Arthrogryposis effects each individual differently. Joint contractures may be present in all of the joints (arms, legs, hands, spine, jaw, etc.) or may only effect some of the joints (in some individuals, only lower extremities are effected, in others, only upper extremeties. In some cases, a single joint may be effected). Contractures are generally divided into two categories. Flexion contractures describe joints that are locked in a bent or flexed position. Extension contractures describe joints that are locked in a straight or extended position. Both limit range of motion or joint mobility. It is also common for individuals born with arthrogryposis to experience severely clubbed feet and/or some degree of scoliosis (although this is not always the case).

How Evan is effected

Evan was born with amyoplasia, the most common form of arthrogryposis. As defined above, amyoplasia effects muscle growth and development. As a result, Evan is missing the majority of the muscle in both of his arms. Because the mucles in his arms are absent, he has no active movement in his hands (is unable to move fingers or grip with his hands) or arms. All of the movement in his arms comes from his shoulders. Both of his arms are in flexion (they are locked in a bent position). Evan was born with severely clubbed feet which have been corrected surgically and with additional serial casting. His legs are also in flexion (they are both locked in a bent position). He currently wears KAFO's (Knee Ankle Foot Orthotics aka full leg braces) to maintain the correction of his feet, straighten (as much as possible) his knees and provide support for weight bearing. Evan's hips are also externally rotated.

Evan received no therapy or medical intervention prior to joining our family in December 2007 (he was 3.5 years old). When he came home, he was unable to sit unsupported and had very little use of his arms and legs. With therapy, bilateral clubbed foot surgery, serial casting, bracing and lots of hard work, Evan is now able to sit without support (and is working very hard to get from laying to sitting on his own), can bear weight on his legs and walk with assistance (using a walker, gait trainer or mommy). Moving from his shoulders, he is able to pick things up by sliding objects between his fingers or pushing the backs of his hands together. He can also use one hand (usually lefty) to assist the other in turning the pages of a book and is working on learning to use an adaptive fork and spoon (the curved utensil is attatched to a cuff around his wrist, he "scoops" by moving his arm from his shoulder and gets the utensil to his mouth by leaning forward slightly and using his opposite arm to support the arm holding the utensil). He uses his mouth to paint, color, sort, point and use the computer (with a mouth stick) and play with his matchbox cars.

Evan has come a long way since joining our family and has shown us that he has limitless potential. He still has a long way to go, but we know that he can and will accomplish anything and everything that he puts his mind to. In short, Evan is a pretty amazing guy!

To learn more about Arthrogryposis go to AMC Support or follow the links on the sidebar.

"Why special needs?"

"Why special needs?" This was a question we were asked a lot during the process of adopting our boys, Joshua and Evan, from Uzbekistan and Ukraine. The truth is, we did not set out to adopt a child with special needs (much like a parent does not "set out" to conceive a child with special needs). Like most adoptive parents, we were hoping to adopt a healthy child (specifically a girl) as young as possible. So it only makes sense that we would come home with two little boys (one of whom was already 3.5 years old) with special needs! (If you'd like the whole story, you can find it here.)

Honestly, the fact that these two incredible little boys are a part of our family is evidence to me that God knows each of us individually and He knows exactly what we need. Our boys needed the opportunity to grow up in a loving family and to receive the medical intervention that would make it possible for them to reach their full potentials in life. More importantly, however, is the fact that our Heavenly Father knew how much WE needed THEM.

The more time I spend with my boys (and other people just like them), the more I am convinced that WE are the ones with special needs. You see, those of us who are "able bodied" or "typical" believe that there is a "normal" way of doing things. We all walk, talk and think "normally" and when we can't do things within the "normal" realm, we often give up. We limit ourselves because we have never had to learn to think outside of the box. Individuals with special needs do not place these limitations upon themselves. Often, they are forced to think outside of the box, therefore giving them limitless potential.

This is evidenced in the way that my son Joshua flies around the house at lightening speeds, using his arms. Or the way that my son Evan turns the pages of a book, paints, colors and plays with matchbox cars with his mouth. If my boys want to do something, they WILL do it. They will do it differently than you and I might, but they WILL do it. And in the process, they have taught me that there is nothing that I cannot do. They have taught me to think outside of the box. They have taught me that, I too, have limitless potential.

These amazing little boys are two of the most precious gifts that God has ever given me. They have blessed by life so completely that there are not words to adequately express my gratitude. Joshua and Evan are living sunshine and they brighten every corner of my life and bring joy to everyone who has the privilege of knowing them. And they remind me every day that there is nothing that I cannot do!