Welcome back! If this is your first time joining this blog, welcome (feel free to read through past posts)! We are a family with two natural sons who have Down syndrome (Caleb 7 and Joshua 3). In this blog I share some of our challenges and joys during our journey.
There are many times that I wonder where I fit... Most of my friends do not have children with Down syndrome... for those that do, they have ONE child with DS! I feel I don't really relate with "regular" moms, and to be quite honest we are the "worst nightmare" for those who do have a child with DS! Do not misunderstand what I am saying... I LOVE my family! I LOVE my boys! But we are just not like other families... to be honest, we are quite difficult to miss! We rarely just blend into the crowd... there are rare occasions that we can...
Every year the Down Syndrome Association of Greater St. Louis (DSAGSL) has a DS awareness walk in Forest Park - Stepping Up for Down Syndrome (formally The Buddy Walk). In years past we have gathered friends & family and put on our walking shoes to join the thousands of walkers. But, this past year has been full of extra challenges (Mamaw Canines and Aunt Mary Lee going through lung cancer treatment, Frank finishing BSN program & starting CRNA program, and a VERY difficult school year for Caleb), so we were just going to skip the event. A couple friends expressed interest in going so we thought, "Why not? Let's go!" Even after our friends needed to back out we loaded the boys up and headed across the river to St. Louis, Mo. Because this is one of those cherished times that we can just be one of the crowd!
Nearly every year we have gone to the DS walk, or any event that the DSAGSL puts on, I cry... sometimes it is the shear number of people supporting DS, sometimes it is being apart of a larger group or purpose than myself, and sometimes is is just the raw love I have for my unique family!
The day was very hot and humid so the sunscreen was applied and the stroller was unloaded so we could join this thrilling crowd! As we were walking through the parking lot Caleb began to "melt down". Crowds and loud noises can set him into a utter tizzy, but this time he was trying to communicate a great need of his... he was hurting! As Frank looked closer he realized Caleb must have gotten sunscreen in his eyes! Caleb's eyes became blood shot and he was rubbing them with extreme purpose... but to no avail because the more Caleb rubbed the more sunscreen got into his eyes. The pain was more than he could handle and he only way Caleb could express his discomfort was to TOTALLY melt down. By this time Caleb's eyes were so red it hurt to even look at him! Only yards away form the van, we just loaded back up and headed to a pharmacy to get some eye drops.
Frank got some extra treats for our hurting boy, but Caleb was in so much pain none of the usual "bribes" worked... not McDonald's... not swimming... not ice cream... not beads... not candy... not Veggie Tales... not Signing Times... not a movie... not the park. He was REALLY in pain! When the eye drops did not offer instant relief we knew it was time to just go home! No need to push it... when we push our luck we always seem to get knocked down!
Poor Caleb screamed all the way home in unbearable pain... once home we held him down again to re administer eye drops. This time Frank kept Caleb in a "bear hug" hold for a few minuets to make sure the drops had a chance to work their magic, and they did!
Our "Red Eye Trip" was just a reminder that sometimes we must accept our limits (or the limits of our children)! This may seem like a duh kind of statement, but it has taken me a while to accept it. I am the type of person who wants to get the most out of everything I do... stay as long as I can... push myself to the limits... but my kids have taught me that I need to know the limits. That more is not always best!
This time it was a physical pain that made us leave. But, Frank and I are learning the art of calling it quits. We have made it our goal to leave "on a good note" to avoid figurative "red eye" trips (complete hysterics). The kids may be having a great time at the park, zoo, pool, friend's house... when we decide to leave. We want to leave before they are so exhausted that they can not see strait and thus lead to an emotional melt down. Kiddos with Down syndrome can fatigue easier then their peers, thus leading to crankiness and emotional fits for my kids.
So, now I have eye drops in the first aid kit. Hoping that because they are in the car I will not need to use them... but nonetheless they are there if we do! I have also invested in some "tear free" sun screen. Even with all of my efforts there is a chance for another "Red Eye Trip" and when it comes I will wrap my arms around my child and tell him that I love him and that I will try to make it all better! But life sometimes hurts and makes our eyes red...
Lord, help me to show unconditional love to my boys! Help me be a source of comfort when they are hurting. Please, Lord, grant me wisdom in all situations!
Sunday, June 27, 2010
Wednesday, June 9, 2010
Totally Amazing...
Welcome back! If this is your first time joining this blog, welcome! Feel free to browse through past posts. We are a family with two natural sons (Caleb almost 7 & Joshua 3) with Down syndrome (DS) and this blog shares some of our adventures.
I saw something totally amazing the other day! I will not be talking specifically about DS in this post, but because I have children with special needs I want share this amazing event. Let me set the stage for you. First, we live on a VERY busy street. Second, just down the road a block (if even that) there is a workshop for adults with special needs, Silver Creek Mill.
I was sitting in the back yard enjoying the beautiful spring weather when a young man came around the corner (off the busy road onto the side street). He had a back pack on and he had a huge umbrella open because it looked like it could rain. I knew this young man did live on our street, but I thought he might be visiting a friend. At a closer look I knew he probably should not be walking around by himself... I could not tell what his special needs were but I knew there were some... just then a 20-something man came around the corner... I thought, "Oh, good this must be his 'helper'! They must be from Silver Creek and are out enjoying a nice walk!" So I did not move from my chair.
But then a moment later, the umbrella boy came back toward the main drag with no helper... "Oh, no! I need to call someone... who? The cops? Silver Creek?" I went inside and grab the phone and then ran to the window with the lap top... I was still not sure who I should call but I wanted to keep an eye on this young man. I was starting to have some anxiety for him... who is he? Do they know he is wandering the streets by himself? What if that were my child? How should I approach him? What do I say? Would he run into the street if I talk to him? As I was gazing out the window, still with a fuzzy brain about who needed to be called or what to do, I saw it... it only lasted 15 seconds 30 at the most...
The umbrella boy was standing at my neighbor's chain linked fence petting a wild bird! Just standing there... backpack on, umbrella in hand... gently stoking this birds head! Not caring what was going on around him... he lovingly caressed this bird with his bare hands. I thought my eyes were tricking me until the 20-something man came back followed by a van to pick up the umbrella boy... the bird flew off at the on coming commotion.
I stood at the window phone in hand with my mouth gaping open... "Wow that was AMAZING!" I just kept repeating to myself, "That kid was petting a bird, a WILD bird! AMAZING!" I could not believe it! Let's be real, my mom feeds Blue Jays on her back deck, by the end of the summer they will SOMETIMES eat out her hand, sometimes... This kid just walked up to a bird and started petting it! It could have been sick I guess, but it did not flop or struggle to fly off it just flew away, far away, without effort....
Later that day I was still totally amazed! I kept obsessing over what I saw, "What an amazing gift God has given that young man... I don't know what he can't do... but I know I will never be able to do what he just did! Amazing!" I will never know who that boy was, what his "special" issues are, or if he was even suppose to be with those people. What I do know is that God gave me a gift! I was at the right place, at the right time, with my eyes open! Watching umbrella boy did make me think about my boys... what are the amazing things they are doing right in front of me? Am I watching? Do I really see their amazing gifts? There are lists of things that they will never do, but what can they do?
So, please keep your eyes open and look for the AMAZING things around you!
God, thank you for that gift! Please help me to keep my eyes open! I want to see the amazing things you are doing in my life and in the life of my boys!
I saw something totally amazing the other day! I will not be talking specifically about DS in this post, but because I have children with special needs I want share this amazing event. Let me set the stage for you. First, we live on a VERY busy street. Second, just down the road a block (if even that) there is a workshop for adults with special needs, Silver Creek Mill.
I was sitting in the back yard enjoying the beautiful spring weather when a young man came around the corner (off the busy road onto the side street). He had a back pack on and he had a huge umbrella open because it looked like it could rain. I knew this young man did live on our street, but I thought he might be visiting a friend. At a closer look I knew he probably should not be walking around by himself... I could not tell what his special needs were but I knew there were some... just then a 20-something man came around the corner... I thought, "Oh, good this must be his 'helper'! They must be from Silver Creek and are out enjoying a nice walk!" So I did not move from my chair.
But then a moment later, the umbrella boy came back toward the main drag with no helper... "Oh, no! I need to call someone... who? The cops? Silver Creek?" I went inside and grab the phone and then ran to the window with the lap top... I was still not sure who I should call but I wanted to keep an eye on this young man. I was starting to have some anxiety for him... who is he? Do they know he is wandering the streets by himself? What if that were my child? How should I approach him? What do I say? Would he run into the street if I talk to him? As I was gazing out the window, still with a fuzzy brain about who needed to be called or what to do, I saw it... it only lasted 15 seconds 30 at the most...
The umbrella boy was standing at my neighbor's chain linked fence petting a wild bird! Just standing there... backpack on, umbrella in hand... gently stoking this birds head! Not caring what was going on around him... he lovingly caressed this bird with his bare hands. I thought my eyes were tricking me until the 20-something man came back followed by a van to pick up the umbrella boy... the bird flew off at the on coming commotion.
I stood at the window phone in hand with my mouth gaping open... "Wow that was AMAZING!" I just kept repeating to myself, "That kid was petting a bird, a WILD bird! AMAZING!" I could not believe it! Let's be real, my mom feeds Blue Jays on her back deck, by the end of the summer they will SOMETIMES eat out her hand, sometimes... This kid just walked up to a bird and started petting it! It could have been sick I guess, but it did not flop or struggle to fly off it just flew away, far away, without effort....
Later that day I was still totally amazed! I kept obsessing over what I saw, "What an amazing gift God has given that young man... I don't know what he can't do... but I know I will never be able to do what he just did! Amazing!" I will never know who that boy was, what his "special" issues are, or if he was even suppose to be with those people. What I do know is that God gave me a gift! I was at the right place, at the right time, with my eyes open! Watching umbrella boy did make me think about my boys... what are the amazing things they are doing right in front of me? Am I watching? Do I really see their amazing gifts? There are lists of things that they will never do, but what can they do?
So, please keep your eyes open and look for the AMAZING things around you!
God, thank you for that gift! Please help me to keep my eyes open! I want to see the amazing things you are doing in my life and in the life of my boys!
Monday, May 17, 2010
Angles Among Us
Welcome back! If this is your first time joining this blog, welcome. Please feel free to read through past blogs. We are a family with two biological sons who have Down syndrome (Caleb - almost 7 & Joshua - 3). The purpose of this blog is to encourage those who have loved ones with DS and to educate those who do not. I pray you enjoy!
Too often I go through life without taking time to see the blessings all around me. More times than not my "blessings" are people, not things or money... "angels" if you will! I want to dedicate this blog to just a few of the "angles" in my life.
The first angel I would like to mention is Tina Whitby. She is one of my most cherished friends! Tina and I have been friends for ten years now. She is one of those friends that I want to become! I can talk to her about anything and know that she will love me, yet she will give me her honest opinion. She has been at my side during some of my happiest and darkest moments. It was Tina (9 months pregnant herself) who decorated my house for the homecoming of Caleb. It was Tina who saw fatigue setting in, so she took Caleb when he was a baby for the night. It was Tina who ALWAYS saw Caleb as just a boy, looking past his Down syndrome, even when I could not! Than it was Tina's house that became Caleb's second home when Joshua arrived. The first 18 months of Joshua's life was spent at doctor's appointments, surgeries, and week long hospital stays. Where was Caleb? At Aunt Tina's, of course! Aunt Tina is Caleb's favorite! In fact one time I forgot to send a show-and-tell object to school with Caleb. The teacher said he stood proudly before his classmates and announced, "Aunt Tina!" Followed with some Caleb jargon and then a few more, "Aunt Tina!"'s.
It was Tine who quite literally took the fall for Caleb once. We were at a Christmas bowling party and Caleb took off running down the very slick, greased isle. With out hesitation Tina took off after him, breaking his fall. Caleb was just fine, Aunt Tina on the other hand fell HARD! Tina came up saying, "All I could think about was Caleb's neck! I just could not let him hit his head!" Caleb's neck has some laxity that makes him more susceptible to serious spinal injuries. With out regret, Tina spent almost 6 months recovering from protecting Caleb! (Frank and I felt horrible for her!) Tina and her family are not just great friends, they are family! To call Tina a "friend" is not a strong enough term, a sister is a bit closer, but I prefer ANGEL. Tina is truly a God send in my life! (I love you Tina and am blessed because of you!)
Because Caleb and Joshua require a bit more attention than other kids their ages (both still in diapers, speech delays, no two way conversation... just to name a few things), we can't leave them with just any one. We need to know that whoever watches them is physically and mentally able to accept the challenge. Date nights are few and far between, to say the least... God has sent a "family of angels" into our life to offer a little reprieve.
Barb and Jeff Hannah have become the boys' "Illinois Grandparents"! The first time Barb suggested bring the boys to their house so Frank and I could go on a date we smiled and said, "Awe, that is so nice. Thanks, we may have to do that!" But not really sure how serious they were, we just let it drop. Barb called me a few times before we put it on the calendar. To be quite honest, she had to almost pursue me to watch the boys. We did not want to burden them. We saw our boys as a challenge, so we expected everyone to see them that way (shame on us). The Hannah's truly saw our boys as a blessing! That touched my soul to the deepest part of my being! Having the boys over became a family ordeal, their daughters (Jody & Jackie) would come home from college for the night just to spend time with Caleb and Joshua! Jody even bought Caleb a touch and feel book and Joshua a Build-A-Bear just because she thought they would like them. She was right! We know that the boys are having a great time and are in a safe place when they are with the Hannah's! We now feel like we can call and ask if the boys can come over, rather than make them hunt us down. By loving our boys they have loved us! (Thank you Hannah's! We all love you!)
Finally, I can not mention "angels" with out talking about my own Mom! After having children of my own my relationship with my Mom has gone from Mother-Daughter to Mother-Mother relationship. She has dropped everything to be with after the birth of both boys. A few times she has spent a week at time with Caleb while Joshua was in the hospital. My step-dad (Steve), though being newly weds and not having children of his own, did not hesitate to let her leave. She has accommodated for their needs when we visit and allowed them to just be boys! Mom is an incredible Grandma!
To be honest I never truly understood the love of a mother until I became one! This journey of being a mother of special needs kids has been an emotional challenge for me, but I did not understand that it could be an emotional challenge for my Mom as well... I called her one afternoon when Caleb was still a toddler, I was so burdened by the path before me I could not see straight. I was just venting, crying, & morning to my Mom when she began to cry as well, "Betsy, I just wish I could take this pain away for you! I wish I could make it all better!" I froze... My mom was saying the exact words that I had uttered to Caleb so many times, only she was saying them to ME! It was a revelation: my Mom loves me as much as I love Caleb! She wants to take away MY pain! She wants ME to have the best life possible! She feels for ME the way I feel for MY boys! Now when my Mom tells me that she loves me or that she is proud of me, I hear it differently... Because I know what it like to see my children face challenges and over come them! Mom is a God-send, an Angel! (I love you, mom!)
Take some time to look at your own life... because there truly are ANGELS AMONG US!
Too often I go through life without taking time to see the blessings all around me. More times than not my "blessings" are people, not things or money... "angels" if you will! I want to dedicate this blog to just a few of the "angles" in my life.
The first angel I would like to mention is Tina Whitby. She is one of my most cherished friends! Tina and I have been friends for ten years now. She is one of those friends that I want to become! I can talk to her about anything and know that she will love me, yet she will give me her honest opinion. She has been at my side during some of my happiest and darkest moments. It was Tina (9 months pregnant herself) who decorated my house for the homecoming of Caleb. It was Tina who saw fatigue setting in, so she took Caleb when he was a baby for the night. It was Tina who ALWAYS saw Caleb as just a boy, looking past his Down syndrome, even when I could not! Than it was Tina's house that became Caleb's second home when Joshua arrived. The first 18 months of Joshua's life was spent at doctor's appointments, surgeries, and week long hospital stays. Where was Caleb? At Aunt Tina's, of course! Aunt Tina is Caleb's favorite! In fact one time I forgot to send a show-and-tell object to school with Caleb. The teacher said he stood proudly before his classmates and announced, "Aunt Tina!" Followed with some Caleb jargon and then a few more, "Aunt Tina!"'s.
It was Tine who quite literally took the fall for Caleb once. We were at a Christmas bowling party and Caleb took off running down the very slick, greased isle. With out hesitation Tina took off after him, breaking his fall. Caleb was just fine, Aunt Tina on the other hand fell HARD! Tina came up saying, "All I could think about was Caleb's neck! I just could not let him hit his head!" Caleb's neck has some laxity that makes him more susceptible to serious spinal injuries. With out regret, Tina spent almost 6 months recovering from protecting Caleb! (Frank and I felt horrible for her!) Tina and her family are not just great friends, they are family! To call Tina a "friend" is not a strong enough term, a sister is a bit closer, but I prefer ANGEL. Tina is truly a God send in my life! (I love you Tina and am blessed because of you!)
Because Caleb and Joshua require a bit more attention than other kids their ages (both still in diapers, speech delays, no two way conversation... just to name a few things), we can't leave them with just any one. We need to know that whoever watches them is physically and mentally able to accept the challenge. Date nights are few and far between, to say the least... God has sent a "family of angels" into our life to offer a little reprieve.
Barb and Jeff Hannah have become the boys' "Illinois Grandparents"! The first time Barb suggested bring the boys to their house so Frank and I could go on a date we smiled and said, "Awe, that is so nice. Thanks, we may have to do that!" But not really sure how serious they were, we just let it drop. Barb called me a few times before we put it on the calendar. To be quite honest, she had to almost pursue me to watch the boys. We did not want to burden them. We saw our boys as a challenge, so we expected everyone to see them that way (shame on us). The Hannah's truly saw our boys as a blessing! That touched my soul to the deepest part of my being! Having the boys over became a family ordeal, their daughters (Jody & Jackie) would come home from college for the night just to spend time with Caleb and Joshua! Jody even bought Caleb a touch and feel book and Joshua a Build-A-Bear just because she thought they would like them. She was right! We know that the boys are having a great time and are in a safe place when they are with the Hannah's! We now feel like we can call and ask if the boys can come over, rather than make them hunt us down. By loving our boys they have loved us! (Thank you Hannah's! We all love you!)
Finally, I can not mention "angels" with out talking about my own Mom! After having children of my own my relationship with my Mom has gone from Mother-Daughter to Mother-Mother relationship. She has dropped everything to be with after the birth of both boys. A few times she has spent a week at time with Caleb while Joshua was in the hospital. My step-dad (Steve), though being newly weds and not having children of his own, did not hesitate to let her leave. She has accommodated for their needs when we visit and allowed them to just be boys! Mom is an incredible Grandma!
To be honest I never truly understood the love of a mother until I became one! This journey of being a mother of special needs kids has been an emotional challenge for me, but I did not understand that it could be an emotional challenge for my Mom as well... I called her one afternoon when Caleb was still a toddler, I was so burdened by the path before me I could not see straight. I was just venting, crying, & morning to my Mom when she began to cry as well, "Betsy, I just wish I could take this pain away for you! I wish I could make it all better!" I froze... My mom was saying the exact words that I had uttered to Caleb so many times, only she was saying them to ME! It was a revelation: my Mom loves me as much as I love Caleb! She wants to take away MY pain! She wants ME to have the best life possible! She feels for ME the way I feel for MY boys! Now when my Mom tells me that she loves me or that she is proud of me, I hear it differently... Because I know what it like to see my children face challenges and over come them! Mom is a God-send, an Angel! (I love you, mom!)
Take some time to look at your own life... because there truly are ANGELS AMONG US!
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