Monday, May 4 I had to take Caleb to the orthopedic surgeon's for a follow up appointment. He has a rare, but not completely uncommon for people with Down syndrome, neck instability. Because of this issue he is not allowed to participate in contact sports (makes dad sad) or go horse back riding (makes grandma sad) or do gymnastics (makes me sad). Any activities from heights or that could cause a whip lash motion are strictly forbidden because of the risk of spinal cord damage. He loves to run, bowl, swim, and play in the dirt - all very good activities for him to be a part of! While in the waiting room I was reminded of how beautiful Caleb's personality is! Let me set the stage for you...
Joshua and I spent the morning at a special needs play group. We had a bite to eat. Then I had to wake up Joshua from his nap and leave my house by 1 p.m. so I could pick Caleb up from school to make it to his 2:30 appointment. We barley made arrived on time. Cardinal Glennon Children's Medical Center is a very busy place so it was packed! Consequently we spend a solid hour in the waiting room. This clinic has several specialist in one "office" so the waiting area is huge. Caleb likes automatic doors so he spent most of the hour trying to open the door and run out. We also walked laps around the rows and rows of chairs and people. I am sure everyone knew Caleb's name and did not envy my efforts to keep up with him! I even had a parent ask me if he had autism. In a clinic this size there are children of all shapes, sizes, and special issues.
In the midst of this chaos and stress Caleb reminded me that love is the most beautiful gift! As we paced up and down the waiting room Caleb would stop and touch someone or hug a baby. But Caleb's love does not discriminate. He walked right up to a young man in a wheel chair. This young fellow is blind and has virtually no use of any limbs. Most kids (and adults I am sure) would have been afraid of his chair and physical abnormalities. People spend their energy trying not to stair, I know I have been on both sides I am sad to say. Not Caleb! He came right up to Alex and gave him a huge hug and even tried to kiss him on the cheek. As I stood and talked to his mother Caleb remained next to Alex with one hand on his shoulder. Caleb stood touching Alex in the most relaxed natural fashion, like they had know each other for years. We learned that Alex is 15 years old and is now completely blind, but that he can hear realy well. We "talked" with Alex as well. Caleb did not care what Alex's issues are he just wanted to show love! Caleb did not care who was looking or what Alex looked like. He was just being Caleb... hugging anyone he felt like hugging. Caleb especially loves men (he calls them all Daddy - now that is embarrassing) and Alex was no exception. What a kid! He can show love with out regard to out ward appearances or preconceptions.
I am ashamed to say that would have not stopped to talk to Alex. Now I will. I would have not touched him, and I would have never tried to hug him... I am shamed by my 5 and 1/2 year old son! Caleb did not care what Alex looked like or what his limitations are. This type of uninhibited love reminds me of the love God shows to us every day! We look at the out side and make judgements (too dirty, too foolish, too poor, too rich, too different) about why we won't even look in their direction. God sees past that and reaches out to touch them, but here's the catch... sometimes we are meant to be the hands God uses! Caleb is not a perfect child and that days was very stressful, yet God used Caleb to touch Alex with love. All it takes is a touch, a smile, a hug, a kind word, an acknowledgement...
I am so proud of my Caleb! There is so much I am learning from him!
Wednesday, May 6, 2009
Monday, April 20, 2009
My new hero!
I will warn everyone that I am not a writer by trade. Please be patient with me as I exercise some "brain muscles" that I have not used in quite some time!
Have you ever met some and thought, "I want to be like that?" or "Now that's a person to look up to?" Have you ever met one of your heroes? Well, I have!
No, I did not meet a pro sports player or a movie star. I did not get to meet Beth Moore or Julia Roberts. No, I did not get back stage passes to a Micheal W. Smith or Steven Curtis Champman concerts. My new hero is not famous. He doesn't make lots of money. He is my hero because he is just himself!
My hero is Ryan! He is a 32 year old man with Down syndrome. Why is he my hero? Why do I look up to him? Ryan gives me hope! He allows me to have a glimpse into the future. He helps me see beyond the here-and-now of Caleb and Joshua's lives.
We meet Ryan about 9 months ago when he and his family moved back into the area. When I first meet Ryan I knew I had found a friend, a person to look up to. Over the past few months Ryan's family has opened their hearts and home to us. We have had the chance to talk, laugh and (of course) eat together. Each time my heart is warmed.
I some times see "typical" families and think, "Will my boys ever ____ (fill in the blank)?" Ryan helps answer that question. Ryan graduated from High School. Ryan is taking Life Skills Classes at college. Ryan can dress himself. Ryan takes great pride in his job. He can go to the bathroom by himself. He has his own room and is very proud of it. He mows the lawn. Ryan likes to pour drinks for his dinner guests. He loves meat, but not veggies. He dresses himself. He loves to goof off with Frank (my husband). Ryan has taken a mission trip with is family. He is an usher at church. Ryan is giving me hope!
We've all heard the heart warming stories about people with Down syndrome who get married or live "on their own". These are beautiful! They are... but when I am elbow deep in being a Mom of two little ones with Down syndrome I don't want to think about marriage or living on their own. I start dreaming of two way conversations with my boys or of road trips with "potty breaks" not diaper changing breaks. I long for the day we can tell jokes (and they get the punch line) or of playing pranks and they understand when and when not to do it. I look forward to Caleb saying, "Mom, don't come in here! I can go to the bathroom by myself!" If my boys want to get married or move out okay... I'll deal with it then. Reality is they may not. Let me be really honest, many kids want to be astronauts when they grow up, but very few people go to space. Just because a child does not became an astronaut does not mean they do nothing!
Ryan is just Ryan! He does not have to be famous or rich or extra ordinary to touch my life. He just needs to be himself. Ryan gives me hope that some day my boys will ____ (fill in the blank)!
I pray someday my boys will be a "Ryan" in someone's life!
Have you ever met some and thought, "I want to be like that?" or "Now that's a person to look up to?" Have you ever met one of your heroes? Well, I have!
No, I did not meet a pro sports player or a movie star. I did not get to meet Beth Moore or Julia Roberts. No, I did not get back stage passes to a Micheal W. Smith or Steven Curtis Champman concerts. My new hero is not famous. He doesn't make lots of money. He is my hero because he is just himself!
My hero is Ryan! He is a 32 year old man with Down syndrome. Why is he my hero? Why do I look up to him? Ryan gives me hope! He allows me to have a glimpse into the future. He helps me see beyond the here-and-now of Caleb and Joshua's lives.
We meet Ryan about 9 months ago when he and his family moved back into the area. When I first meet Ryan I knew I had found a friend, a person to look up to. Over the past few months Ryan's family has opened their hearts and home to us. We have had the chance to talk, laugh and (of course) eat together. Each time my heart is warmed.
I some times see "typical" families and think, "Will my boys ever ____ (fill in the blank)?" Ryan helps answer that question. Ryan graduated from High School. Ryan is taking Life Skills Classes at college. Ryan can dress himself. Ryan takes great pride in his job. He can go to the bathroom by himself. He has his own room and is very proud of it. He mows the lawn. Ryan likes to pour drinks for his dinner guests. He loves meat, but not veggies. He dresses himself. He loves to goof off with Frank (my husband). Ryan has taken a mission trip with is family. He is an usher at church. Ryan is giving me hope!
We've all heard the heart warming stories about people with Down syndrome who get married or live "on their own". These are beautiful! They are... but when I am elbow deep in being a Mom of two little ones with Down syndrome I don't want to think about marriage or living on their own. I start dreaming of two way conversations with my boys or of road trips with "potty breaks" not diaper changing breaks. I long for the day we can tell jokes (and they get the punch line) or of playing pranks and they understand when and when not to do it. I look forward to Caleb saying, "Mom, don't come in here! I can go to the bathroom by myself!" If my boys want to get married or move out okay... I'll deal with it then. Reality is they may not. Let me be really honest, many kids want to be astronauts when they grow up, but very few people go to space. Just because a child does not became an astronaut does not mean they do nothing!
Ryan is just Ryan! He does not have to be famous or rich or extra ordinary to touch my life. He just needs to be himself. Ryan gives me hope that some day my boys will ____ (fill in the blank)!
I pray someday my boys will be a "Ryan" in someone's life!
Monday, April 6, 2009
I have been thinking about the ways my boys have touched lives without trying... They truly are blessings!!!!
Some times when Joshua is feeling his two-year-old-ness I will tell him, "Joshua, it is not so special have Down syndrome in this house. So you can't play the DS card on me!" The truth is all kids are special... The Psalms say that "children are a gift from God..." My boys just seem to touch lives by just being themselves! They don't try they just are!
Let me explain... Caleb will just hug a perfect stranger in Sam's or WalMart and time and time again they will say something to the affect of, "That is exactly what I needed!" Some times the words are uttered through soft tears.
Just today I read www.tammynischan.blogspot.com on the beginning of the Hope Basket (Feb. 28, 2009). Tammy told of how the birth of our Joshua was an inspiration for launching the Hope Basket in their area. I did nothing... Joshua did nothing but come into this world! Yet now hundreds of Families will receive the blessing of the Hope Basket. Tammy you are one of my heroes in the faith...
Some days I feel so sorry for myself... Wondering why we were given two kids with Down syndrome? There are other days I feel sorry for anyone who does not have a child with Down syndrome! Today I am on the edge of both..
My kids are a blessing! God is faithful and I know he will give me the love, patience, and strength I need... Thank you, God, for my boys!
Some times when Joshua is feeling his two-year-old-ness I will tell him, "Joshua, it is not so special have Down syndrome in this house. So you can't play the DS card on me!" The truth is all kids are special... The Psalms say that "children are a gift from God..." My boys just seem to touch lives by just being themselves! They don't try they just are!
Let me explain... Caleb will just hug a perfect stranger in Sam's or WalMart and time and time again they will say something to the affect of, "That is exactly what I needed!" Some times the words are uttered through soft tears.
Just today I read www.tammynischan.blogspot.com on the beginning of the Hope Basket (Feb. 28, 2009). Tammy told of how the birth of our Joshua was an inspiration for launching the Hope Basket in their area. I did nothing... Joshua did nothing but come into this world! Yet now hundreds of Families will receive the blessing of the Hope Basket. Tammy you are one of my heroes in the faith...
Some days I feel so sorry for myself... Wondering why we were given two kids with Down syndrome? There are other days I feel sorry for anyone who does not have a child with Down syndrome! Today I am on the edge of both..
My kids are a blessing! God is faithful and I know he will give me the love, patience, and strength I need... Thank you, God, for my boys!
Subscribe to:
Posts (Atom)