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!"
Sunday, May 16, 2010
Tuesday, April 6, 2010
Kids Say Some Funny Things!
If this is your first time visiting my blog, welcome! Feel free to read through past blogs. I am sharing the adventures of raising our two biological sons with Down syndrome. Caleb is 6 ½ and Joshua is 3. I hope you enjoy!
It has been quite a while since I have had the chance to blog, sorry… I want to share some really funny things that other kids have said. I hope you get a good hardy, belly laugh at some of these great words!
A good friend Kyle (age 8 or 9 at the time) told his mom and dad that he meet a new “friend” at school. He said that this friend reminded him of Caleb. Kyle’s parents ask “How so?” After pondering this question for a while he carefully answered, “Well… he’s a man of few words!” They laughed and asked a few more questions than realized this new friend had Down syndrome! Kyle continued to play with and “look out for” his friend even when it was not popular with his other friends! We are blessed to have friends like Kyle!
Jared (age 6 at the time) and his family came to Joshua’s first birthday party. He watched as Frank changed Joshua’s diaper. Jared stood in complete and utter amazement then simply stated yet almost questioned, “Joshua has his privates?!” Not quite sure where Jared was going with this statement Frank remained silent as Jared continued, “Jordane (his sister) is FIVE YEARS OLD and she STILL doesn’t have her privates yet!!!” It was as if Jared had been waiting silently all of his life for Jordane to “get her privates.” Frank controlled his laughter until Jared left the room….To say the least Jared’s parents had a little talk with him a few days later!
Another friend, Trevor (age 11 at the time), got off the school bus one day very upset. There was kid on the school bus who was not being very nice and was taking other people’s stuff. This upset Trevor to no end! Trevor’s mom started coaching him about how to deal with bullies. But after thinking about the situation his mom realized that the boy may have some special needs… she was correct in her assessment of this young man. So her coaching changed to how to be sensitive, nice and understanding of those with special issues. After a great talk with his mom Trevor sighed, “I just wish all people with special needs looked like Caleb (and Joshua) so I would KNOW that they have special needs!”
We are truly blessed to have friends at embrace our kids! These parents don’t just want their children to be the “nice kids”, they want their children to grow up to be awesome adults… and they will be! My plea to all parents, grandparents, aunts, uncles, friends don’t be afraid to talk about Down syndrome or other special needs with your kids. Let them have friends that are different than them. Ask questions… and answer their questions. And yes, your kids will say some funny things too... and that's okay!
It has been quite a while since I have had the chance to blog, sorry… I want to share some really funny things that other kids have said. I hope you get a good hardy, belly laugh at some of these great words!
A good friend Kyle (age 8 or 9 at the time) told his mom and dad that he meet a new “friend” at school. He said that this friend reminded him of Caleb. Kyle’s parents ask “How so?” After pondering this question for a while he carefully answered, “Well… he’s a man of few words!” They laughed and asked a few more questions than realized this new friend had Down syndrome! Kyle continued to play with and “look out for” his friend even when it was not popular with his other friends! We are blessed to have friends like Kyle!
Jared (age 6 at the time) and his family came to Joshua’s first birthday party. He watched as Frank changed Joshua’s diaper. Jared stood in complete and utter amazement then simply stated yet almost questioned, “Joshua has his privates?!” Not quite sure where Jared was going with this statement Frank remained silent as Jared continued, “Jordane (his sister) is FIVE YEARS OLD and she STILL doesn’t have her privates yet!!!” It was as if Jared had been waiting silently all of his life for Jordane to “get her privates.” Frank controlled his laughter until Jared left the room….To say the least Jared’s parents had a little talk with him a few days later!
Another friend, Trevor (age 11 at the time), got off the school bus one day very upset. There was kid on the school bus who was not being very nice and was taking other people’s stuff. This upset Trevor to no end! Trevor’s mom started coaching him about how to deal with bullies. But after thinking about the situation his mom realized that the boy may have some special needs… she was correct in her assessment of this young man. So her coaching changed to how to be sensitive, nice and understanding of those with special issues. After a great talk with his mom Trevor sighed, “I just wish all people with special needs looked like Caleb (and Joshua) so I would KNOW that they have special needs!”
We are truly blessed to have friends at embrace our kids! These parents don’t just want their children to be the “nice kids”, they want their children to grow up to be awesome adults… and they will be! My plea to all parents, grandparents, aunts, uncles, friends don’t be afraid to talk about Down syndrome or other special needs with your kids. Let them have friends that are different than them. Ask questions… and answer their questions. And yes, your kids will say some funny things too... and that's okay!
Thursday, January 14, 2010
Highs & Lows
If you are joining this blog for the first time, welcome! Please feel free to read through past blogs. I have two natural children with Down syndrome and this blog offers a reflection of our life.
Today was a day of emotional "highs" and "lows".
This morning I went over to St. Louis University and spoke to first year medical students about being a mother with two children who have Down syndrome. What an honor! This was my third year being a "guest" speaker. I was able to just update my talk and add a few pictures to the slide show. Sounds so simple, but I still get "butterflies" every time I talk. Joshua (the 2 1/2 year old) was my stage buddy and he did fabulous!
The students were very attentive and asked some really great questions! In many ways I feel like this is one way I can advocate for all people with Down syndrome. I am always humbled and blessed by this kind of opportunity! As I drove home I was mumbling a silent little prayer, "Lord, this is what I was created to do! Thank you for opening this door! My boys are such a gift and I know you, Lord, are the one who gave them to me! Thank you! Send me, Lord, wherever you want me to go!"
With every "high" there is a low... Shortly after getting home from St. Louis University I received a phone call from school. Caleb's teacher called to inform me that he had punched his aid in the face. That Caleb is having "increasingly aggressive" behavior and that it has become a "real problem"... I just wanted to cry (oh, wait I did as soon as I got off the phone). I know Caleb is a VERY strong willed child, but I had no suggestions...
The teacher and I brainstormed some things. So, the next step will be to do a Functional Behavior Assessment so that a Behavior Plan can be implemented into his IEP (Individual Education Plan). For some time I have been thinking Caleb needs to see a Neurologist for sensory issues and "autistic" traits. We already have an appointment, but it is not until March. So, I called the Pediatrician's office it see if they could expedite the proses for us. The nurse (our favorite nurse) said she would call a few offices for us to see what she can do. I love our Pediatrician and her staff!
So today I have felt the "high" of being an advocate. By speaking up and sharing our story, I really felt like I was making a difference! Yet that "high" was short lived... the reality of life met me at the back door... There is always an issue... there will always be something that needs to be dealt with... Now my prayer is sounding something like this, "Lord, please just give me strength. Help me balance life in a way that I am serving you and my family. Help me, Lord, to be faithful no matter the issue... I just want to effectively help Caleb so that he can function appropriately... Lord, no matter the challenge I know you are in charge and you love us! Thank you! One more thing, Lord... I know I said to send me any where, but I really did not want to go to the Principal's office.. but if that is where you are sending me than I will go..."
It seems life is just one issue followed by another with very brief moments of sanity and peace!
Today was a day of emotional "highs" and "lows".
This morning I went over to St. Louis University and spoke to first year medical students about being a mother with two children who have Down syndrome. What an honor! This was my third year being a "guest" speaker. I was able to just update my talk and add a few pictures to the slide show. Sounds so simple, but I still get "butterflies" every time I talk. Joshua (the 2 1/2 year old) was my stage buddy and he did fabulous!
The students were very attentive and asked some really great questions! In many ways I feel like this is one way I can advocate for all people with Down syndrome. I am always humbled and blessed by this kind of opportunity! As I drove home I was mumbling a silent little prayer, "Lord, this is what I was created to do! Thank you for opening this door! My boys are such a gift and I know you, Lord, are the one who gave them to me! Thank you! Send me, Lord, wherever you want me to go!"
With every "high" there is a low... Shortly after getting home from St. Louis University I received a phone call from school. Caleb's teacher called to inform me that he had punched his aid in the face. That Caleb is having "increasingly aggressive" behavior and that it has become a "real problem"... I just wanted to cry (oh, wait I did as soon as I got off the phone). I know Caleb is a VERY strong willed child, but I had no suggestions...
The teacher and I brainstormed some things. So, the next step will be to do a Functional Behavior Assessment so that a Behavior Plan can be implemented into his IEP (Individual Education Plan). For some time I have been thinking Caleb needs to see a Neurologist for sensory issues and "autistic" traits. We already have an appointment, but it is not until March. So, I called the Pediatrician's office it see if they could expedite the proses for us. The nurse (our favorite nurse) said she would call a few offices for us to see what she can do. I love our Pediatrician and her staff!
So today I have felt the "high" of being an advocate. By speaking up and sharing our story, I really felt like I was making a difference! Yet that "high" was short lived... the reality of life met me at the back door... There is always an issue... there will always be something that needs to be dealt with... Now my prayer is sounding something like this, "Lord, please just give me strength. Help me balance life in a way that I am serving you and my family. Help me, Lord, to be faithful no matter the issue... I just want to effectively help Caleb so that he can function appropriately... Lord, no matter the challenge I know you are in charge and you love us! Thank you! One more thing, Lord... I know I said to send me any where, but I really did not want to go to the Principal's office.. but if that is where you are sending me than I will go..."
It seems life is just one issue followed by another with very brief moments of sanity and peace!
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