Hello everyone! My name is Betsy Caines. I have been blessed with two natural sons (Caleb 10 & Joshua 6) who have Down syndrome!
The "nerd" name (scientific term) for Down syndrome is trisomy-21. Explanation: we all get 23 chromosomes from mom & 23 chromosomes from dad. So, with trisomy-21 there is an extra #21 chromosome. For more information visit http://dsagsl.org/about-down-syndrome/ . Medically Down syndrome is considered a mutation. When Caleb (now 10) was just a baby Frank and I were joking around saying that when Caleb became a teenager he would be a "teenage mutant"... laughing, so we would not cry, the conversation went from bad to worse.. we decided that he must have some "super powers"... because isn't that what mutants do? Have Super Powers?! Now I have two "mutants"... So what are Caleb and Joshua's "super powers"?!
One challenge that I face is recognizing and nurturing Caleb and Joshua's strengths... We all have likes and dislikes, abilities and inabilities, or strengths and weaknesses. Though it should not be a big surprise... my boys have very different personalities, thus their talents are also very different.
Joshua (my 6 year old) is... shall we say... a "leader" (bossy might be a better fit). He likes to be in charge! He enjoys being the center of attention. If I am not giving him enough of my attention when HE thinks I should he will blurt out, "Mommy, look at you!" Translation: Mommy look at what I am doing! I want your full attention, not just your head nod. I want all EYES on me! I think I am doing something great and I want you to think it is great as well! What cracks me up is that Joshua can get people to do just about anything! He has a plan and Joshua knows how to work it. He often gets Caleb to follow him in his game of "Joshua says"... He will tell you what to do and how to do it (and he is so cute, funny and demanding that lots of people will do what he says!). So my challenge is how do I help develop the positive characteristics and discourage the negative? Joshua's bossiness can turn quickly into bullying. Ironically, I use to worry that Joshua would get bullied, never dreaming he might be the bully... We work at taking turns... We help him learn to share the spot light... We encourage Joshua to praise the accomplishments of others... I believe Joshua has the super power of being IN CHARGE!
Caleb (my 10 year old) on the other hand is much different. He loves people but does not insist on being the leader or the center of attention. He likes to be the encourager! Caleb is the ultimate greeter. He also likes showing physical affection. This can be quite an issue... with puberty knocking at the door his peers are going to be less understanding when he wants to pass out endless hugs. Once the hugging begins it is like the plague - Caleb spreads them to everyone in his path! Caleb's hugs can also have a very magical effect on people. There have been times when he has hugged perfect strangers (despite my efforts to prevent it) and they would just bust into tears! Several just simply stated, "I really needed that..." As you can imagine, I want Caleb to have a loving spirit, but there are some people that I don't necessarily want him hugging... and those who don't want to be hugged! So, then what? How do we encourage him to show love and kindness? How do we teach personal space? We are teaching him to give high-fives and to ask before hugging... We are trying to set boundaries... We are teaching him to use words instead of touching... it is a work in progress... Still yet, Caleb can put a smile on some faces that look like they have not smiled in decades! So, Caleb's supper power is LOVE!
We all been created with unique talents and gifts... So, what's your supper power?
Showing posts with label down syndrome. Show all posts
Showing posts with label down syndrome. Show all posts
Wednesday, January 22, 2014
Sunday, June 27, 2010
The Red Eye Trip
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!
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!
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!
Sunday, May 16, 2010
Good Grief!
We are a family with two biological sons (Caleb-almost 7 & Joshua-3)who have Down syndrome! If this is your first time joining us, welcome! Please feel free to read through past blogs. This blog shares some of the unique challenges that our family faces! Feel free to send an email if you would like to contact me: mom2tri21boys@gmail.com
One unique challenge that I faced is grief! Many people grieve for many different reasons... the fact is I have grieved for many different reasons (death of a parent, disappointment, friends moving, miscarriage, change in life plans). But the birth of a child is not normally associated with grief! Yet that is exactly where I found myself almost seven years ago...
Frank (my wonderful husband)and I were finally ready to make the two-some a family of three. When we received the news that Caleb had Down syndrome our world shattered! I felt like my-dream-Caleb had died! He was not at all what I expect... or what I wanted for that matter... I wanted a boy that would grow up to be an athlete, a doctor, a teacher, an actor, a fireman, a police man, a businessman, a husband, a dad... I did not expect... well... I did not want... let me be really honest, I did not want Down syndrome!
The grieving began... Like with the death of my Dad I found myself extremely "weepy". Just thinking about Down syndrome would make me cry. I would cuddle Caleb and just start sobbing, not just a few tears but gut wrenching sobs! I even tried making deals with God, "If you will just fix Caleb I will..." or "Some how God make me the one with a disability not Caleb!" But God's answer was, "This, my child, is the path I have chosen for you. Let me lead you!"
Grief does not stay at home it goes wherever you go, like to Target. Caleb was only a few weeks old and we were in the baby section at Target... I saw two other moms talking and laughing as they picked through the cute clothes. Their toddlers were sitting so nicely while the moms enjoyed shopping. My mind was so clouded with grief that I became angry with these two strangers! I was silently yelling at them, "How dare you be so happy when I am so unhappy?! How can anyone be happy?! I hate you for being so happy!!!!" No words escaped my mouth, I just stood frozen on the verge of tears, so I grabbed Caleb and we left...
Or there was the time at church. Caleb was a bet older, a year or so. During the service a video was played: a mother had to bring her special needs adult daughter on an airplane. Across the isle a man complained to the stewardess that he wanted this young lady moved because she was bothering him and his family. The stewardess was faced with the challenge of telling this mom that her and her daughter needed to be relocated. Finally while mom was being shown alternative seating options, a man sat next to the daughter. He listened to her and comforted her while she cried about her grandfather's death. Finally the young lady fell asleep... As the video continued with the uncomfortable plot I became anxious... I felt like I would explode! So I darted to the bathroom before my emotion became uncontrollable. I hardly reached the door of the lady's room when a fountain of burning tears gushed forth. But without warning the door opened and an older woman took me in her arms and just hugged me. "Will people really treat him that way? Are people really going to look at him like? Are people really that cruel?" Through her tears this stranger gently said, "Yes they will..." We stood in the bathroom crying for what seemed like hours... I finally learned that Sandy has a grown daughter with special needs. Years latter she told me that she saw a reflection of herself (25 years ago) in my eyes that day... she saw the same fear, anger, and confusion that she knew all too well! Sandy has become on of God's angel's in my life!
Honestly I spent almost a solid two years grieving the loss of my "dream child". Slowly I began accepting my new life, and I started to see joy and happiness again! My eyes were opened and I saw Caleb as a blessing, not a mistake. I started to dream "special dreams" for my "special Caleb"! Believe me when I say that grief hurts more than any physically pain on earth... the pain reaches into the depths of the soul! But after grabbing a hold of God's hand and just allowing Him to drag me through the trenches of sorrow and anger... grief was freeing! Grief was good!
Caleb was almost four when Joshua was born. Shock of all shocks Joshua was born with Down syndrome as well! But this time it was just really, really weird... odd... strange... unusual... quite simply unheard of! But not all that life shattering. Oh, other people were kind of funny to listen to when we told them that Joshua also had DS. They did not know what to say, so they said some really crazy stuff! But, my most cherished response came from my good friend Abby. Just months before I met Abby, they lost their two year old son Austin. With many health complications added to Down syndrome his little body just gave out. Upon meeting, Abby and I quickly became friends and shortly after that Joshua was born. When Abby heard the "shocking news" that Joshua had Down syndrome, she yelled out, "I am so jealous! I am so jealous! I am so excited for you!"
Oh, there are still times I am moved to tears... but let's be real, that is just being a Mom! There will always be times that I will wish (grieve if you will) that Caleb & Joshua are more like their "typically developing" peers! But I can also assure you that there will be many times I am glad they are not!
"Thank you, God for my boys...just they way they are!"
One unique challenge that I faced is grief! Many people grieve for many different reasons... the fact is I have grieved for many different reasons (death of a parent, disappointment, friends moving, miscarriage, change in life plans). But the birth of a child is not normally associated with grief! Yet that is exactly where I found myself almost seven years ago...
Frank (my wonderful husband)and I were finally ready to make the two-some a family of three. When we received the news that Caleb had Down syndrome our world shattered! I felt like my-dream-Caleb had died! He was not at all what I expect... or what I wanted for that matter... I wanted a boy that would grow up to be an athlete, a doctor, a teacher, an actor, a fireman, a police man, a businessman, a husband, a dad... I did not expect... well... I did not want... let me be really honest, I did not want Down syndrome!
The grieving began... Like with the death of my Dad I found myself extremely "weepy". Just thinking about Down syndrome would make me cry. I would cuddle Caleb and just start sobbing, not just a few tears but gut wrenching sobs! I even tried making deals with God, "If you will just fix Caleb I will..." or "Some how God make me the one with a disability not Caleb!" But God's answer was, "This, my child, is the path I have chosen for you. Let me lead you!"
Grief does not stay at home it goes wherever you go, like to Target. Caleb was only a few weeks old and we were in the baby section at Target... I saw two other moms talking and laughing as they picked through the cute clothes. Their toddlers were sitting so nicely while the moms enjoyed shopping. My mind was so clouded with grief that I became angry with these two strangers! I was silently yelling at them, "How dare you be so happy when I am so unhappy?! How can anyone be happy?! I hate you for being so happy!!!!" No words escaped my mouth, I just stood frozen on the verge of tears, so I grabbed Caleb and we left...
Or there was the time at church. Caleb was a bet older, a year or so. During the service a video was played: a mother had to bring her special needs adult daughter on an airplane. Across the isle a man complained to the stewardess that he wanted this young lady moved because she was bothering him and his family. The stewardess was faced with the challenge of telling this mom that her and her daughter needed to be relocated. Finally while mom was being shown alternative seating options, a man sat next to the daughter. He listened to her and comforted her while she cried about her grandfather's death. Finally the young lady fell asleep... As the video continued with the uncomfortable plot I became anxious... I felt like I would explode! So I darted to the bathroom before my emotion became uncontrollable. I hardly reached the door of the lady's room when a fountain of burning tears gushed forth. But without warning the door opened and an older woman took me in her arms and just hugged me. "Will people really treat him that way? Are people really going to look at him like? Are people really that cruel?" Through her tears this stranger gently said, "Yes they will..." We stood in the bathroom crying for what seemed like hours... I finally learned that Sandy has a grown daughter with special needs. Years latter she told me that she saw a reflection of herself (25 years ago) in my eyes that day... she saw the same fear, anger, and confusion that she knew all too well! Sandy has become on of God's angel's in my life!
Honestly I spent almost a solid two years grieving the loss of my "dream child". Slowly I began accepting my new life, and I started to see joy and happiness again! My eyes were opened and I saw Caleb as a blessing, not a mistake. I started to dream "special dreams" for my "special Caleb"! Believe me when I say that grief hurts more than any physically pain on earth... the pain reaches into the depths of the soul! But after grabbing a hold of God's hand and just allowing Him to drag me through the trenches of sorrow and anger... grief was freeing! Grief was good!
Caleb was almost four when Joshua was born. Shock of all shocks Joshua was born with Down syndrome as well! But this time it was just really, really weird... odd... strange... unusual... quite simply unheard of! But not all that life shattering. Oh, other people were kind of funny to listen to when we told them that Joshua also had DS. They did not know what to say, so they said some really crazy stuff! But, my most cherished response came from my good friend Abby. Just months before I met Abby, they lost their two year old son Austin. With many health complications added to Down syndrome his little body just gave out. Upon meeting, Abby and I quickly became friends and shortly after that Joshua was born. When Abby heard the "shocking news" that Joshua had Down syndrome, she yelled out, "I am so jealous! I am so jealous! I am so excited for you!"
Oh, there are still times I am moved to tears... but let's be real, that is just being a Mom! There will always be times that I will wish (grieve if you will) that Caleb & Joshua are more like their "typically developing" peers! But I can also assure you that there will be many times I am glad they are not!
"Thank you, God for my boys...just they way they are!"
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