Tuesday, August 14, 2007

More about Crew

My sister, Sheri, is a long time advocate for people with disabilities. In an effort to increase awareness she presented to the sisters in our ward at Enrichment tonight. I have to say I learned a lot! It was well done and I plan to share some of what she said here on my blog at a later date. Also, we had three sisters in our ward share their thoughts on mothering a child with a disability. Naturally, I was asked to speak. Since my SIL requested that I post my talk here, I'm feeling daring so here is most of it:

Crew is 3 ½ years old and plays a dynamic role in our family. His favorite food is yogurt and if or when he has his way he eats it 3 times a day. Crew and I share guilty pleasures of ice-cream, soda pop and potato chips.

A younger brother to S and H, Crew teaches unconditional love. Even with such a limited vocabulary it was no surprise to us that Crew’s first word besides mom and dad was "HUGS" and he always uses the plural form. Crews Hugs are given out quite freely but he is the master and its up to him how often and how long the hug lasts. Sometimes he asks for a hug only to hug you for a millisecond, push you away, and ask for more. Sometimes his hugs last many minutes. Sometimes he squeezes and almost always he pats you on the back.

Crew loves music. Anybody who has spent time with Crew knows this is true. Almost all kinds of music excite him from classical to rock-n-roll. I’ve noticed that Crew has the talent of rhythm. He bops his head, sways his arms and kicks his legs.... always on beat and always with a smile on his face. From Crew I’ve learned that it is possible to dance while sitting in a chair. When in the car or at home I’ve gotten in the habit of turning the volume up because the louder the music the more squeals and laughter it generates.

Crew’s zest for life and simple pleasures have impacted those around him. This talent of lifting others has affected not only his family but his therapists, child care provider, teachers and even his bus driver. What a gift it is to have such an impact on people. Without a doubt, Crew has purpose to life and many talents to share.

I would like to share with you some of the medical facts that dominate our world. On a regular basis I am asked questions like, "How long before he was born did you know...?" and "How early was he?". I don’t want you to think I am offended by these questions because I’m not. In fact, it helps me to talk about it and if I am asked questions about Crew I know its because you care. There was nothing wrong with Crew in the womb and he was full-term. However, just prior to his birth Crew was with little or no oxygen for over an hour. It’s taken me a few years to be able to say this out loud but basically Crew’s brain was injured at birth.

First of all, the most significant life altering diagnosis we received was that of "Cerebral Palsy" or CP. Cerebral palsy is a condition caused by injury to the parts of the brain that control our ability to use our muscles and bodies. Cerebral means having to do with the brain. Palsy means weakness or problems with using the muscles. CP can be mild, moderate, or severe ranging from an individual with a slight limp to one who is in a wheelchair, possible feeding tube, and/or a trachea. Sometimes children with CP can also have learning problems, problems with hearing or seeing, or mental retardation. Usually, the greater the injury to the brain, the more severe the CP.

When we brought Crew home from the hospital we knew he had a brain injury but we did not know what his outcome would be. Doctors and hospital staff gave countless examples of those who defy the odds. I believed then, and still do, that the brain and human body have an immense capacity to heal. The brain has the ability to "reroute" itself, finding connections and alternate paths around the injured area of the brain. However, each situation is unique and each story a different ending. We didn’t know what to expect.

His first diagnosis, at four months old, of permanent bilateral hearing loss wasn’t too hard to swallow. Four months later on the same day I found out that not only did he have Amblyopia and Strabismus (which is basically a misalignment of the eyes) but also CP. His eyes were corrected through patching and minor surgery. Since then Crew has developed a seizure disorder and in April we found out that his hearing loss is progressive.

The CP that Crew has effects both arms and legs, his trunk control, digestive system, and oral strength. In the past year Crew has learned to navigate his walker, crawl, and roll-over. The tightness in his hips and hamstrings and low tone in his trunk make it difficult for him to sit unassisted. We continue to work with therapists on increasing strength, developing motor planning and the skills needed to hopefully "pull-to-stand", "climb into a chair" and sit without support. The spasticity affects the muscles used in chewing, swallowing, and speaking. Doctors and therapists are hopeful that Crew will continually progress. Crew is very well aware mentally of where he is. He is definitely not content to just sit and watch life pass him by. This is evident by his increased frustration and strong desire to participate with his peers. I’ve noticed that Crew is happiest when he is included in activities and when he is up and moving around.

Since moving here three years ago, I’ve been so grateful to associate with you. We’ve been blessed immensely with awesome neighbors and friends. Crew has been accepted by not only the adults here but the children as well. It thrills me to know that Crew is accepted for who he is. He is loved. He has friends. I’ve often wondered what conversations regarding Crew have taken place within the walls of your homes. Many have taught their children well. Wether teaching by precept, example or both, I’m not sure but the parents here have done an excellent job.

However, I realize that its not too hard to love a 3- year old or 4-year old. But I do worry about him growing up. I wish he could stay little and cute forever. I’ve worried and fretted about how I will handle it when he is big and getting teased. Will he still drool when he is twelve? Will he get called names? Will his classmates trip him in the hall?

The last 3 ½ years have been an interesting journey. Mothering Crew has been both the hardest thing I’ve done and also the most rewarding. I’m normal. There are days when I want to scream and there are days when I wouldn’t change a thing. I’m so thankful for the gospel. I’ve leaned on the power of prayer, a lot. Many times I have been so overcome that I’ve fallen to my knees and I’ve been comforted. I’ve had strangers literally pop out of the woodwork with an encouraging word. For example: Recently, I decided that I would unload the walker, strap on his braces and take the extra time to let Crew walk through the video store. It’s always easier to just pack him around but for his benefit I decided it was worth it. I parked my van and unloaded the walker, strapped him into his harness and begin the slow trek to the front door when two gentlemen jumped in front and held both doors wide open. Crew gave them a smile and walked in. People stopped to tell him "great job". One of the employees complimented Crew on his walking and then said, "I use to use a walker". I looked at him and said, "Are you serious?" and he replied, "Yes, I have CP". WOW! I felt a bit sheepish. Later as we were leaving the store I realized that the two men who had opened the doors were the father and brother of a child with Down Syndrome. It was so unusual and I couldn’t help but think that it was meant to happen that way.

I can honestly say I’m thankful for this experience. I would rather not have Crew go through this but I have grown immensely. I am not the same person I was before. I will never be the same again.

Recently, I came across a scripture that has given me strength found in Romans 15:1 " We then that are strong ought to bear the infirmities of the weak, and not to please ourselves". This scripture can be used in reference to physical and spiritual weakness and it does have double meaning in my life in that while I am physically strong I am not always spiritually strong. I try to be but just like you I have my days... Ironically, Crew is often the strong one. He is blessed with a strong spirit and he lifts me up.

***This has been a long post! If you are still with me..... Thank you;)

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