I am at a loss. There is a situation at my oldest son's school with two boys from his class-his Kindergarten class. Not long before the holiday break, Christian started having trouble with two boys who he had befriended early on in the school year. They were all of a sudden saying, "I'm not your friend anymore." This upset Christian terribly and day in, day out, he would go to school expressing hope that maybe today, they would be his friends again. Then on a Tuesday before the holiday break, I arrived to pick Christian up at school to discover that during lunch one boy had dumped his milk on Christian, and then got the other boy to dump his milk on Christian too. The teacher was immediately on it, sent the boys to the office to talk to the Principal (Christian was asked to go to share his side of the story) and the two boys were given immediate consequences. The day after the milk incident, when I went to pick Christian up from school, he said that both boys had apologized and that they were all friends again! (Said with happy, shiny eyes.) However, when I saw his teacher on the way out, she informed me that the three of them had spent the day getting into trouble together and just didn't seem to be a good fit for each other. Actually, her words were: These three are toxic together. And then the final knife twist: It breaks my heart, because they are already starting to get a reputation with the yard teachers, and they are just so young for that. To a person who spent her life as the "good student", albeit probably mostly a People Pleaser, I felt like I couldn't have heard worse words.
The teacher assured me that she thought part of the recent trouble they were getting into was just that all of the kids were in need of a break. She assured me that after holiday break, she thought things would be much better. She was right. Things have been much better. There are still little things I'm noticing about these boys and I have theories, but mostly I try to just encourage Christian to be friends with kids who want to be his friend and not to spend a lot of time if someone is being mean or says they aren't friends. Other than that, my trusting boy forgives wholeheartedly and if a kid says Sorry, then all is right in the world again.
Today, when I arrived to pick up Christian, I see him cornered by the fence with these two boys. Christian had tears in his eyes and looked very upset. They were in clear view of arriving parents, but not in the line of sight of any of the teachers. I quickly approached and asked Christian what was wrong. He said, "Sasha poked me in the neck." Sasha immediately turned and left, but the other boy (named Elijah) began to taunt Christian- right in front of me- "Don't tell on Sacha. Don't tell on Sasha." The tone was less of a plea and more of a sing song, more of a taunt. It's not the first time I've heard this from this kid. I took Christian's hand, gathered his backpack and began to walk out when Christian said, "I need to tell you something, Mom. Elijah and Sasha were telling me at lunch that they are going to kill me. Then Mrs. Salazar walked us to the office to talk to the Principal. But it's okay because Elijah and Sasha said they are sorry and we are friends again." Sigh. Then as we walked out, I heard the sing song voice again, "You can't tell on Sasha because he already le-ft. You can't tell on him n-ow."
I emailed the teacher tonight to see if there is another side of the story. I just don't know what else to do. I told Christian it's never okay to tell someone you are going to "Kill Them". These are not okay words to use with people. I don't *think* that my son has encountered two psychopathic Kindergartners who are really out to off my son. But, I also don't know what else to do. I have been happy with how the school has handled everything. Today was the first time there has been an incident where I wasn't told first by the teacher. And despite this intermittent social situation, Christian seems to be happy and doing well in school.
This is really the stuff of parenting, isn't it? The tough stuff where there isn't always a right answer. The fact is, it might actually be harder on me than it even is on my son. How do I teach him that we aren't all perfect, and even friends will make mistakes? How do I teach him which things are unacceptable- the kinds of things that require a complete severing of friendships? Frankly, I wonder how much I will have to do with this in his lifetime. Although we first look to our parents to unlock the mysteries of how we became who we are, there are so many things and people that influence that shape along the way. So, I'm doing my best, but I don't seem to be able to make a change for him on this one. At least not yet. So, I try to just be in his corner. I might not say or do the right thing all of the time, but if my kids know 100% that I am in their corner, I think that would be a parenting win.
My boy happy to see me home after work...
Wednesday, January 30, 2013
Monday, January 21, 2013
Digging in
Both of my boys went to bed with a fever. We have mostly avoided any major flus this season, so my fingers are crossed that this is something quick to pass. Our weekend was full of much needed unscheduled time. I've been tackling my winter ravaged backyard, which is nothing short of back breaking work, complete with regular thorn stabbings, frequent nail breakings, and fraught with curse words and sighs-a-plenty. Strangely enough, working in my backyard always brings to mind a difficult time. Four days after receiving a pre-natal diagnosis that my baby had Down syndrome, I had a camera crew and staff from the HGTV show "Jaimie Durie's The Outdoor Room" come claim my home to begin a 3 day yard makeover. I was waking up every morning ready to cry & feeling like I was living a bad dream...wishing I could just check out of my life and come back when I felt like a human being again. Instead, I had dozens of people traipsing through my house, while I pretended that everything was "normal" and tried to keep my son Christian on a regular schedule despite the chaos. Frankly, it was kind of hell. I wanted so much to enjoy the experience, and to be the excited homeowner..which I was... but it was all hitting me a little differently. I vacillated between gratitude that these people were doing such a nice thing for us amidst a crazy, awful time and extreme frustration, thinking, "Why NOW??!!"
The TV crew wanted to film a "surprise scene" with me. All I knew was that it was meant to be a "surprise" and nothing else. They asked for me and some of my workout friends (I was teaching Stroller Strides (A Mom and Baby Fitness program) at the time and the show LOVED that angle) to show up in my backyard for the scene. My friends who showed up for me that day knew what was going on with us and were also dealing with the emotions of supporting a friend in tough times. We strolled our babies into the yard and laughed and talked, when all of a sudden behind me, a man began bashing a hole into the side of my house. He kept bashing and the hole began getting bigger and bigger. The sound was deafening and my mind whirred through the scenario: It's a YARD makeover, why is he breaking my bedroom wall? Is this part of the "surprise" or is this something else?? The host of the show stopped the work and came over to me to say that they had decided to add a little more to the budget and to give us brand new African Mahogany French Doors that would lead out to our new backyard!!! We were a makeover stereotype, as tears began filling my eyes...and the eyes of all of my friends. The show likely thought they had hit pay dirt with a bunch of push overs....but none of us were really welling up over the french doors.
In the end, the actual show doesn't have time for all of these outtakes, and maybe it FELT bigger than it looked. But, my yard is somehow tied into that time. It's not a bad thing, it just IS. I get out there and I try to tackle and tame a yard that requires more time and need than I have to give it. Even though I curse and I struggle, the work is always satisfying. I move a little closer to the yard I want to see again, and I move a little further away from a time that was painful. There is just something about digging my hands into the dirt that connects me to my soul...
And because I can't just throw down the words BACKYARD MAKEOVER without some kind of back up, here is a clip of the show I was able to find even though the full episode isn't currently running...
The TV crew wanted to film a "surprise scene" with me. All I knew was that it was meant to be a "surprise" and nothing else. They asked for me and some of my workout friends (I was teaching Stroller Strides (A Mom and Baby Fitness program) at the time and the show LOVED that angle) to show up in my backyard for the scene. My friends who showed up for me that day knew what was going on with us and were also dealing with the emotions of supporting a friend in tough times. We strolled our babies into the yard and laughed and talked, when all of a sudden behind me, a man began bashing a hole into the side of my house. He kept bashing and the hole began getting bigger and bigger. The sound was deafening and my mind whirred through the scenario: It's a YARD makeover, why is he breaking my bedroom wall? Is this part of the "surprise" or is this something else?? The host of the show stopped the work and came over to me to say that they had decided to add a little more to the budget and to give us brand new African Mahogany French Doors that would lead out to our new backyard!!! We were a makeover stereotype, as tears began filling my eyes...and the eyes of all of my friends. The show likely thought they had hit pay dirt with a bunch of push overs....but none of us were really welling up over the french doors.
In the end, the actual show doesn't have time for all of these outtakes, and maybe it FELT bigger than it looked. But, my yard is somehow tied into that time. It's not a bad thing, it just IS. I get out there and I try to tackle and tame a yard that requires more time and need than I have to give it. Even though I curse and I struggle, the work is always satisfying. I move a little closer to the yard I want to see again, and I move a little further away from a time that was painful. There is just something about digging my hands into the dirt that connects me to my soul...
And because I can't just throw down the words BACKYARD MAKEOVER without some kind of back up, here is a clip of the show I was able to find even though the full episode isn't currently running...
Sunday, January 20, 2013
And...he's UP!
Yesterday, while working & playing in the yard, THIS happened:
We can't help but celebrate. The thing is, he's been capable of this for some time I think, but lacked the courage to do it on his own.
Next step...walking! :)
We can't help but celebrate. The thing is, he's been capable of this for some time I think, but lacked the courage to do it on his own.
Next step...walking! :)
Wednesday, January 16, 2013
Tooth fairy News
On Sunday, Christian discovered his two bottom front teeth were loose.
On Monday, this happened:
It changed the whole mood of the day. We went from a cranky, complaining household, getting ready to get the boys to school, to instant excitement and awe! It was bittersweet for me. The first tooth he lost, was the very first one he ever got. Maybe it always works like that, but it struck me as a special thought. It's true what everyone says. They DO grow up too fast.
From the moment Christian held that tiny little tooth in his palm, he began to imagine the tooth fairy coming to visit. I was a little concerned about my role as tooth fairy, because of his initial skepticism surrounding the Elf on the Shelf at Christmas time. However, this time he just seemed happy and excited that a fairy was coming to visit him (and "would she leave a note?"). Perhaps it was the attempt during Christmastime to try to imbue a plastic toy with magical qualities that was the real fail. Perhaps those things that are just "magic" need to live inside their heads, where their imagination paints the full picture of the character. I sent Christian off to school to show off his brand new hole and share his exciting news.
Later that night, Christian insisted on writing a note to the tooth fairy:
Then off he went to bed with visions of tooth fairies dancing in his head, while I in my slipper socks, had just logged on to Facebook to get the low down on the going rate for teeth these days. After polling my friends, I decided on $1.25- the rate my sister uses. I liked the idea of it, because he gets a bill and a coin and I knew he would be excited about that. I pulled out the tooth fairy notes that I bummed off a friend and tucked the money and note into a new envelope and slipped it under his pillow, without so much as a slight stir from him.
When he woke in the morning, he had a glint in his eye. "Look what I found, Mom." He pulled the envelope out from under his pillow. He opened it carefully and took out the note and money. He turned the note over to me to read:
Greetings! How delighted I am that you have lost your first tooth! I have been watching and waiting for this very special time to come to you and introduce myself. As the fairy who greets all children losing a tooth for the first time, I would like to say from all of the fairies how proud and happy we are!
Each time you lose another tooth, a fairy will visit you while you are sleeping. Because you have trusted us with your tooth, we will always leave you a little something in return. Be sure to check under your pillow for your gift and by your window...maybe you will even find a little bit of fairy dust that fell from my wings!
We will be looking over you until the next time a tooth starts to wiggle! Until then, sweetest dreams my new friend.
With love from,
Your Tooth Fairy
He smiled from ear to ear, and when we looked over at the window near his bed, there it was...just a small trail of sparkly fairy dust! We talked about keeping his money in a special place, and since we don't yet have any kind of piggy bank for him, I found a cute mason jar for him to hold his treasures. Unbeknownst to me, he took the dollar to school. And spent it in the drink vending machine. Sigh.
The next day, it was back to reality, and my car decided to remind me of that by overheating. Again. I drove straight to my mechanic, who refilled my fluids and told me they would need a day with it to replace the radiator. While we were waiting for my fluids to be filled, my mechanic asked how my boys are. I replied saying, "Great! Actually Christian lost his first tooth yesterday." He said, "No way! My son lost his first tooth last week!...Hey, Can I ask you? How much did your tooth fairy leave?" I laughed and told him we had decided on $1.25, since then he could have a bill and a coin. His face fell. "Oh man, I am such an idiot!" I said, "Why? How much did you leave him?" He said, "I can't even tell you now. I'm so embarrassed." I finally managed to get him to admit it. He sighed and said, "Twenty Five." I answered, "Cents?" He looked down. "Dollars??!" I said, incredulously. He said again, "I'm such an idiot. I never had a tooth fairy, so I didn't know what to do. I panicked and gave him $25. My wife freaked. She was like, 'You're supposed to leave like a QUARTER. 50 cents TOPS!!'" I just had to laugh. I told him that maybe they could work in some sort of note on the second tooth explaining that the first tooth always goes for a higher premium. Either that or be prepared to shell out some serious cash.
Yes, my friends. We had news of the tooth fairy this week. It was exciting stuff. But the real news is: The going rate for a tooth is NOT TWENTY FIVE BUCKS.
On Monday, this happened:
It changed the whole mood of the day. We went from a cranky, complaining household, getting ready to get the boys to school, to instant excitement and awe! It was bittersweet for me. The first tooth he lost, was the very first one he ever got. Maybe it always works like that, but it struck me as a special thought. It's true what everyone says. They DO grow up too fast.
From the moment Christian held that tiny little tooth in his palm, he began to imagine the tooth fairy coming to visit. I was a little concerned about my role as tooth fairy, because of his initial skepticism surrounding the Elf on the Shelf at Christmas time. However, this time he just seemed happy and excited that a fairy was coming to visit him (and "would she leave a note?"). Perhaps it was the attempt during Christmastime to try to imbue a plastic toy with magical qualities that was the real fail. Perhaps those things that are just "magic" need to live inside their heads, where their imagination paints the full picture of the character. I sent Christian off to school to show off his brand new hole and share his exciting news.
Later that night, Christian insisted on writing a note to the tooth fairy:
Then off he went to bed with visions of tooth fairies dancing in his head, while I in my slipper socks, had just logged on to Facebook to get the low down on the going rate for teeth these days. After polling my friends, I decided on $1.25- the rate my sister uses. I liked the idea of it, because he gets a bill and a coin and I knew he would be excited about that. I pulled out the tooth fairy notes that I bummed off a friend and tucked the money and note into a new envelope and slipped it under his pillow, without so much as a slight stir from him.
When he woke in the morning, he had a glint in his eye. "Look what I found, Mom." He pulled the envelope out from under his pillow. He opened it carefully and took out the note and money. He turned the note over to me to read:
Greetings! How delighted I am that you have lost your first tooth! I have been watching and waiting for this very special time to come to you and introduce myself. As the fairy who greets all children losing a tooth for the first time, I would like to say from all of the fairies how proud and happy we are!
Each time you lose another tooth, a fairy will visit you while you are sleeping. Because you have trusted us with your tooth, we will always leave you a little something in return. Be sure to check under your pillow for your gift and by your window...maybe you will even find a little bit of fairy dust that fell from my wings!
We will be looking over you until the next time a tooth starts to wiggle! Until then, sweetest dreams my new friend.
With love from,
Your Tooth Fairy
He smiled from ear to ear, and when we looked over at the window near his bed, there it was...just a small trail of sparkly fairy dust! We talked about keeping his money in a special place, and since we don't yet have any kind of piggy bank for him, I found a cute mason jar for him to hold his treasures. Unbeknownst to me, he took the dollar to school. And spent it in the drink vending machine. Sigh.
The next day, it was back to reality, and my car decided to remind me of that by overheating. Again. I drove straight to my mechanic, who refilled my fluids and told me they would need a day with it to replace the radiator. While we were waiting for my fluids to be filled, my mechanic asked how my boys are. I replied saying, "Great! Actually Christian lost his first tooth yesterday." He said, "No way! My son lost his first tooth last week!...Hey, Can I ask you? How much did your tooth fairy leave?" I laughed and told him we had decided on $1.25, since then he could have a bill and a coin. His face fell. "Oh man, I am such an idiot!" I said, "Why? How much did you leave him?" He said, "I can't even tell you now. I'm so embarrassed." I finally managed to get him to admit it. He sighed and said, "Twenty Five." I answered, "Cents?" He looked down. "Dollars??!" I said, incredulously. He said again, "I'm such an idiot. I never had a tooth fairy, so I didn't know what to do. I panicked and gave him $25. My wife freaked. She was like, 'You're supposed to leave like a QUARTER. 50 cents TOPS!!'" I just had to laugh. I told him that maybe they could work in some sort of note on the second tooth explaining that the first tooth always goes for a higher premium. Either that or be prepared to shell out some serious cash.
Yes, my friends. We had news of the tooth fairy this week. It was exciting stuff. But the real news is: The going rate for a tooth is NOT TWENTY FIVE BUCKS.
Wednesday, January 9, 2013
Mischievousness NOT delayed
I huffed and puffed and moved some furniture around. (Okay. Actually, I cussed and cussed and moved some furniture around, but I thought huffed and puffed sounded nicer. Now, I've just gone ahead and told you anyway. Oh well. I digress...) Elijah is 2 years and 8 months old and he has figured out how to crawl out of the crib. Christian was 2 years 10 months old when he figured out how to crawl out of the crib. Elijah can't even walk yet, but the dude knows how to crawl out of the crib! He knows how to get what he wants...no delay necessary. I'm hanging onto my last crib-contained hope with this final furniture rearrangement. He leverages anything he can get his mitts on so that he can climb out. I know his IQ is supposedly compromised with his extra genetic material, but sometimes I marvel at just how smart this kid actually is. He has a Phd in Mischievousness, at the very least.
A couple of weeks ago his occupational therapist approached me about the fact that Elijah was throwing some temper tantrums when she was trying to get him to walk from the classroom to the OT gym. He would pitch a fit and cry and dig his heels in with her. As soon as he would see another therapist, he would smile his cunning smile and throw his arms around her for a hug, back away to make eye contact and give another smile and then fling his body against her again for another hug. The boy knows how to work it. However, we were on to his games. I told the therapist that we just need to get everyone on the same page: Elijah needs to walk in between sessions and circle time. No more being carried everywhere. He may throw a fit for awhile, but he can do it....he just doesn't want to. He needs to be walking to gain his strength so that he'll be walking without having to hold hands or use a walker or a push toy. He needs to gain strength so that he'll be independently walking, which I know he will LOVE when he figures it out. The therapist was happy to hear me say this, and remarked, "He's just really strong willed." I laughed out loud. I said, still laughing, "Oh- he's not strong willed. HE'S (pointing to Christian who was looking at a toy in the other room) strong willed." The lady does not know strong willed if my Elijah is it. Still makes me chuckle just thinking about it...
Today, Elijah's Physical Therapist was thrilled with his progress. He has been using the pediatric walker to walk down the long hall from the classroom to the PT and OT gyms. He used to be exhausted by the time he got to the gym and would refuse to play and would just cry. However, the last two days, he has used the walker to walk down there- making adjustments almost completely by himself- and then arrives at the gym happy and ready to play. YAY!!
Tonight, the boys had a mellow night. Homework for Christian got finished early, and we had nowhere to be, no commitments to uphold. I let them just do what they wanted to do, which for Elijah is to... make a mess. He loves to open the dresser drawers and throw everything out. He tries to get at the books. He throws his blocks. And if he sees my computer sitting unattended on the table, he gets a special glint in his eyes, smiles, drops his head like a sprinter about to begin a race and crawls warp speed over to my computer. Even as I come barreling over the furniture to try to beat him to it, he manages just a fraction sooner than I. The mischievousness at it's peak, he lets out a euphoric giggle and begins strumming his fingers all over the keyboard. He has succeeded, if only for a moment.
It has and will continue to take Elijah more time and more effort to do the things that come naturally to others. However, when he is motivated the delay is nearly non-existent. There may not be real words or independent walking, but there is mischievousness a-plenty!
Photos by Leslie Talley Photography
A couple of weeks ago his occupational therapist approached me about the fact that Elijah was throwing some temper tantrums when she was trying to get him to walk from the classroom to the OT gym. He would pitch a fit and cry and dig his heels in with her. As soon as he would see another therapist, he would smile his cunning smile and throw his arms around her for a hug, back away to make eye contact and give another smile and then fling his body against her again for another hug. The boy knows how to work it. However, we were on to his games. I told the therapist that we just need to get everyone on the same page: Elijah needs to walk in between sessions and circle time. No more being carried everywhere. He may throw a fit for awhile, but he can do it....he just doesn't want to. He needs to be walking to gain his strength so that he'll be walking without having to hold hands or use a walker or a push toy. He needs to gain strength so that he'll be independently walking, which I know he will LOVE when he figures it out. The therapist was happy to hear me say this, and remarked, "He's just really strong willed." I laughed out loud. I said, still laughing, "Oh- he's not strong willed. HE'S (pointing to Christian who was looking at a toy in the other room) strong willed." The lady does not know strong willed if my Elijah is it. Still makes me chuckle just thinking about it...
Today, Elijah's Physical Therapist was thrilled with his progress. He has been using the pediatric walker to walk down the long hall from the classroom to the PT and OT gyms. He used to be exhausted by the time he got to the gym and would refuse to play and would just cry. However, the last two days, he has used the walker to walk down there- making adjustments almost completely by himself- and then arrives at the gym happy and ready to play. YAY!!
Tonight, the boys had a mellow night. Homework for Christian got finished early, and we had nowhere to be, no commitments to uphold. I let them just do what they wanted to do, which for Elijah is to... make a mess. He loves to open the dresser drawers and throw everything out. He tries to get at the books. He throws his blocks. And if he sees my computer sitting unattended on the table, he gets a special glint in his eyes, smiles, drops his head like a sprinter about to begin a race and crawls warp speed over to my computer. Even as I come barreling over the furniture to try to beat him to it, he manages just a fraction sooner than I. The mischievousness at it's peak, he lets out a euphoric giggle and begins strumming his fingers all over the keyboard. He has succeeded, if only for a moment.
It has and will continue to take Elijah more time and more effort to do the things that come naturally to others. However, when he is motivated the delay is nearly non-existent. There may not be real words or independent walking, but there is mischievousness a-plenty!
Sunday, January 6, 2013
My Bubble
Maybe it's because I have the most amazing friends. Or because my family is close knit and supportive. Maybe it's because Elijah really is just that special.
I can't feel sad that Elijah has Down syndrome.
I'm not depressed and I don't feel like I'm missing something, or that he is missing out on being something he's not. I sometimes wonder if I am living in a bubble. A bubble of denial?
I read an article last night that a fellow Mama who has a child with Down syndrome wrote. She wrote about Chronic Sorrow. I don't even know if chronic sorrow is a real term or if she is just describing what her experience feels like. She said she never, ever grieves who her daughter is, but only grieves the child she is not. She grieves the person her daughter cannot be. Her article resonated with a lot of people. So, why do I not "get" this?
I have another child, who has all of the potential in the world to be anything he wants. My son, Christian doesn't currently have any obstacles that will prevent him from doing whatever he sets his heart on. Elijah does have obstacles, and he may have more as he gets older. Yet, it couldn't be clearer to me that Elijah's purpose is just different than Christian's. Elijah's purpose on this earth will not be about inventing something cutting edge or leaving an intellectual footprint the size of Big Foot. He will not become President of The United States or a Brain Surgeon. As a society, it seems that we rate our intellectual abilities as the best and most important- as the only things that truly matter or "leave a mark"? Is it a wonder that suicide rates are so high? What about the people who make us feel amazing? What about the muses? What about the people whose purpose is to inspire? I know some very, very intelligent people and their intellectual successes don't necessarily make them happy. Their intellectual successes don't even seem to be part of their true purpose in life (or they just haven't discovered how to use their intelligence for that.)
Don't get me wrong: I get scared sometimes. I worry that once I die, that Elijah will still need help being cared for and I worry that it will be a burden to someone. Christian? But, I also know that times are changing. Science is changing. Attitudes are changing. My husband and I are still going draft a living trust with a special needs clause written into it-because we never know when our time is up. Alongside my fear though, I also have hope. I have hope that both of my children will experience true joy and happiness in their lives...whatever that may look like for each of them.
I know that I may get a little flack for this post, because I realize that to some I may sound like a "Pollyanna". (Did I just date myself? For the record, I don't even actually know who Pollyanna is or why we refer to her. I only know that people conjure her name when a Too good, Goody-Two-Shoes is in effect.) So, I want to clarify that I may not feel the same as some because all we are dealing with for Elijah is an extra chromosome. Many people who have Down syndrome also have a variety of other obstacles: medical conditions, sensory challenges, other diagnoses. I wonder if the compounded effect of additional issues is what creates the cocktail of chronic sorrow? I also know that my nature has always been to focus on the positive, which frankly isn't all that difficult to do when it concerns my Elijah. I wanted to share my bubble about this because I think there are a lot of people out there who are very sad about their children with special needs...maybe even rightly so...but I also know that these same people LOVE their children and want others to know how special they are. I want to share my bubble because having a child with special needs is not always hard. Having children at all is hard. The special needs part doesn't always make that especially so. I think more people need to know this. People need to know THIS, because 92% of the people who get a pre-natal diagnosis of Down syndrome abort their babies. It is my belief that a large, if not majority, of these abortions are because of a lack of balanced information. The doctors are the worst source of information. Google searches are second runner up. The real stories from real families are the only true picture. The real story is that it's not always easy, but it is always worth it.
For now, I'm going to float around in my bubble. Maybe one day it will pop, but maybe it won't. Maybe it will be like one of those Gymboree Bubbles that never pop. You know the ones that just land and stay there until someone pops it? Only mine could theoretically float and land under the couch, living for eternity with the dust bunnies that reside there...
I can't feel sad that Elijah has Down syndrome.
I'm not depressed and I don't feel like I'm missing something, or that he is missing out on being something he's not. I sometimes wonder if I am living in a bubble. A bubble of denial?
I read an article last night that a fellow Mama who has a child with Down syndrome wrote. She wrote about Chronic Sorrow. I don't even know if chronic sorrow is a real term or if she is just describing what her experience feels like. She said she never, ever grieves who her daughter is, but only grieves the child she is not. She grieves the person her daughter cannot be. Her article resonated with a lot of people. So, why do I not "get" this?
I have another child, who has all of the potential in the world to be anything he wants. My son, Christian doesn't currently have any obstacles that will prevent him from doing whatever he sets his heart on. Elijah does have obstacles, and he may have more as he gets older. Yet, it couldn't be clearer to me that Elijah's purpose is just different than Christian's. Elijah's purpose on this earth will not be about inventing something cutting edge or leaving an intellectual footprint the size of Big Foot. He will not become President of The United States or a Brain Surgeon. As a society, it seems that we rate our intellectual abilities as the best and most important- as the only things that truly matter or "leave a mark"? Is it a wonder that suicide rates are so high? What about the people who make us feel amazing? What about the muses? What about the people whose purpose is to inspire? I know some very, very intelligent people and their intellectual successes don't necessarily make them happy. Their intellectual successes don't even seem to be part of their true purpose in life (or they just haven't discovered how to use their intelligence for that.)
Don't get me wrong: I get scared sometimes. I worry that once I die, that Elijah will still need help being cared for and I worry that it will be a burden to someone. Christian? But, I also know that times are changing. Science is changing. Attitudes are changing. My husband and I are still going draft a living trust with a special needs clause written into it-because we never know when our time is up. Alongside my fear though, I also have hope. I have hope that both of my children will experience true joy and happiness in their lives...whatever that may look like for each of them.
I know that I may get a little flack for this post, because I realize that to some I may sound like a "Pollyanna". (Did I just date myself? For the record, I don't even actually know who Pollyanna is or why we refer to her. I only know that people conjure her name when a Too good, Goody-Two-Shoes is in effect.) So, I want to clarify that I may not feel the same as some because all we are dealing with for Elijah is an extra chromosome. Many people who have Down syndrome also have a variety of other obstacles: medical conditions, sensory challenges, other diagnoses. I wonder if the compounded effect of additional issues is what creates the cocktail of chronic sorrow? I also know that my nature has always been to focus on the positive, which frankly isn't all that difficult to do when it concerns my Elijah. I wanted to share my bubble about this because I think there are a lot of people out there who are very sad about their children with special needs...maybe even rightly so...but I also know that these same people LOVE their children and want others to know how special they are. I want to share my bubble because having a child with special needs is not always hard. Having children at all is hard. The special needs part doesn't always make that especially so. I think more people need to know this. People need to know THIS, because 92% of the people who get a pre-natal diagnosis of Down syndrome abort their babies. It is my belief that a large, if not majority, of these abortions are because of a lack of balanced information. The doctors are the worst source of information. Google searches are second runner up. The real stories from real families are the only true picture. The real story is that it's not always easy, but it is always worth it.
For now, I'm going to float around in my bubble. Maybe one day it will pop, but maybe it won't. Maybe it will be like one of those Gymboree Bubbles that never pop. You know the ones that just land and stay there until someone pops it? Only mine could theoretically float and land under the couch, living for eternity with the dust bunnies that reside there...
Thursday, January 3, 2013
The Waiting Room
I saw my Ob/gyn today. I know that seems like I'm opening with just too much information, but I mention it because I haven't seen her since my postpartum check up after Elijah was born. (Please don't do the math. I'll just admit that it has been a little longer than it should have been since I've seen her last.)
The last time I saw her I was raw with emotion from giving birth. I was fragile after enduring Elijah's one week stay in the NICU. My Ob cried with me through our diagnosis. She prayed with me at my bedside when Elijah was born. She left her own family in the middle of the night to come and deliver my baby boy. She went above and beyond in her care for me, and I know it's because she's a Mom too. One of her sons is even named Elijah.
Today brought back a lot of memories. When you get a pre-natal diagnosis of Down syndrome, people tend to remember you. Even when it's been way, way too long since your last appointment. I had my full check up, but my doctor was dying to know about Elijah. It's hard for my face not to glow when I talk about Elijah. He is...cute, sweet, loving, clever and full of personality. I can't help but smile when I talk about Elijah. My doctor said, "You should write a book, Jennifer." And so I said, "Actually, I am going to. Someday I'll send you a signed copy." It was so good to see her and to give her a hug, but I couldn't help tearing up on the way home. I'm not even entirely sure why. I think it has a lot to with the diagnosis experience being so traumatic. I'm so far on the other side of that now, and it's all okay. Elijah is better than okay.
An interesting thing happened today while I was in the waiting room for my appointment. A quadriplegic man and his beautiful, pregnant wife came in and took a seat in the waiting room next to me. I recognized the man right away, although I didn't immediately recall his name. It was inspirational speaker Nick Vujicic. At one point his wife looked at me and smiled and shortly after, I caught Nick's eye and he smiled. I wanted to say, "Hey- I know who you are!" I guess if you're a man with no limbs, people tend to remember you too.
The reason I know who he is, has everything to do with Elijah's diagnosis. My friends and family were reaching out to me as I struggled with what it would mean to have a child with Down syndrome. I received countless poems, quotes, links and videos about inspirational people and situations...all about having special needs. A friend sent me a You Tube video of Nick Vujicic. His story is amazing. It is about overcoming the obstacles, clinging to God and "getting back up again" when you fall. I remember crying my eyes out when I listened to that You Tube video. I think I even felt like I "got it"...which is completely embarrassing now. Certainly a baby's diagnosis of Down syndrome isn't like having no limbs...right? Or is it? Nick's parents wondered if he would ever be able to do "normal" things. Would he ever hold a job or get married? Now, he is a successful inspirational speaker and author who tours the world sharing his message of hope. He is married to a beautiful woman (who has all of her limbs, by the way) and is expecting his first child, as I discovered today. I know there were a lot of people who more than wondered what could possibly become of a kid with no arms or legs. Much like people wonder what could possibly become of a intellectually disabled person with Down syndrome.
Seeing Nick today in the waiting room reminded me that anything is possible. We are the only ones who put limits on ourselves. I spent a lot of months worrying and Googling about what the possibilities for my son could be. Now that I'm 2 and half years into his life, I'm learning to enjoy the ride. I know that Elijah has a strong spirit and a contagious smile, and I have no doubt that he will overcome many obstacles. One day he may even be inspiring others to "get back up again" too...
The last time I saw her I was raw with emotion from giving birth. I was fragile after enduring Elijah's one week stay in the NICU. My Ob cried with me through our diagnosis. She prayed with me at my bedside when Elijah was born. She left her own family in the middle of the night to come and deliver my baby boy. She went above and beyond in her care for me, and I know it's because she's a Mom too. One of her sons is even named Elijah.
Today brought back a lot of memories. When you get a pre-natal diagnosis of Down syndrome, people tend to remember you. Even when it's been way, way too long since your last appointment. I had my full check up, but my doctor was dying to know about Elijah. It's hard for my face not to glow when I talk about Elijah. He is...cute, sweet, loving, clever and full of personality. I can't help but smile when I talk about Elijah. My doctor said, "You should write a book, Jennifer." And so I said, "Actually, I am going to. Someday I'll send you a signed copy." It was so good to see her and to give her a hug, but I couldn't help tearing up on the way home. I'm not even entirely sure why. I think it has a lot to with the diagnosis experience being so traumatic. I'm so far on the other side of that now, and it's all okay. Elijah is better than okay.
An interesting thing happened today while I was in the waiting room for my appointment. A quadriplegic man and his beautiful, pregnant wife came in and took a seat in the waiting room next to me. I recognized the man right away, although I didn't immediately recall his name. It was inspirational speaker Nick Vujicic. At one point his wife looked at me and smiled and shortly after, I caught Nick's eye and he smiled. I wanted to say, "Hey- I know who you are!" I guess if you're a man with no limbs, people tend to remember you too.
The reason I know who he is, has everything to do with Elijah's diagnosis. My friends and family were reaching out to me as I struggled with what it would mean to have a child with Down syndrome. I received countless poems, quotes, links and videos about inspirational people and situations...all about having special needs. A friend sent me a You Tube video of Nick Vujicic. His story is amazing. It is about overcoming the obstacles, clinging to God and "getting back up again" when you fall. I remember crying my eyes out when I listened to that You Tube video. I think I even felt like I "got it"...which is completely embarrassing now. Certainly a baby's diagnosis of Down syndrome isn't like having no limbs...right? Or is it? Nick's parents wondered if he would ever be able to do "normal" things. Would he ever hold a job or get married? Now, he is a successful inspirational speaker and author who tours the world sharing his message of hope. He is married to a beautiful woman (who has all of her limbs, by the way) and is expecting his first child, as I discovered today. I know there were a lot of people who more than wondered what could possibly become of a kid with no arms or legs. Much like people wonder what could possibly become of a intellectually disabled person with Down syndrome.
Seeing Nick today in the waiting room reminded me that anything is possible. We are the only ones who put limits on ourselves. I spent a lot of months worrying and Googling about what the possibilities for my son could be. Now that I'm 2 and half years into his life, I'm learning to enjoy the ride. I know that Elijah has a strong spirit and a contagious smile, and I have no doubt that he will overcome many obstacles. One day he may even be inspiring others to "get back up again" too...
Tuesday, January 1, 2013
2012.
I want to be like People magazine. You know- Have a great, glossy picture filled post highlighting all of the highs and lows from 2012? So, I took a look back through the year as detailed on my blog. I made a list with one column for the Highs and one column for the Lows. The interesting and mostly cool thing about it, is that there was only one real low. 2012 is largely chalk full of highs. Highs and the regular struggles of daily life. The struggles that regardless of the sum of a year, are the real-living part of life.
The Highs of 2012:
Despite my worries that maybe, just maybe, Elijah would never be able to feed himself (not a real worry, of course. Just that momentary impatience waiting for a milestone to happen), he began self-feeding early in 2012. Now he uses a spoon well, drinks from sippy cups, and joins us for dinner out without much hassle. He's a pretty great eater and seems to have very few food aversions, which I love. Even his initial tactile defensiveness seems to have fallen by the wayside. By the end of 2012 he was walking with assistance (helping hands or furniture and push toys), crawling fast, communicating through sign language and sounds, and performing the majority of the hand moves for the circle time songs at school. It's been a big year.
I ran a mud run. This wasn't something that was ever on my bucket list, but ended up holding some significance this year. I learned that a mud run, like life, can have you surrounded by friends but ultimately it is still a personal journey: physically, mentally, emotionally. I finished the run with the confidence that I could tackle any obstacle and do it completely surrounded and supported by a wonderful group of friends. Plus, we got super muddy. Which is totally unique for a grown woman. Unless it's part of a spa treatment. Just sayin'...
After a long, and fairly arduous process, Christian started Kindergarten at our school of choice! Kindergarten is proving to be an exciting and occasionally challenging part of life. Christian is like a little sponge with all he is learning. Academically, he is doing great, with the social aspects as the biggest challenges. Learning to work out the social complications that school provides will be a lesson that he'll deal with...well, let's face it, ALWAYS. Might as well start now.
We also transitioned Elijah from having home-based therapy to a center-based therapy program, which has been absolutely amazing for him. He loves school, has made huge strides in the short time he has been there and his therapists absolutely adore him. I couldn't be happier that we made the switch. It was bittersweet to say goodbye to the therapists who have been with us since he was an infant, but in hindsight, he was ready for something new- with the best part being the social interaction he gets with the other toddlers in the program.
I've had some professional highs as well. I celebrated one full year with my business partner and dear friend, Karen. We make a great team, and it's been a pleasure discovering where our different strengths lie and how to best use them. I'd hoped that our partnership would immediately translate into more business and improved prosperity. It isn't an immediate process, but the things we learned, grew and uncovered this year has laid the ground for some exciting things. Moving our business forward, while continuing to balance the demands of family life is our biggest challenge and yet, we are moving forward and making progress that both Karen and I are proud of. I am very excited and hopeful that the foundation we've laid this year will bear much fruit in 2013!
2012 was an incredible year for friendships. The struggles that 2011 held, shuffled down into something secure. I am so insanely blessed by the girlfriends I have, and we seem to be at a point where we are all confident and appreciative of what we have. Most of my circles cross over each other and it's a happy place. The book club I'm part of has morphed a bit from it's original beginnings, but it is bringing new and interesting people into the fold. I send out an extra special Thank you to my girlfriends for making 2012 so much FUN: Big birthday celebrations, holiday parties, carnivals, snow adventures, ice skating, mud runs, breakfast dates, cocktail hours, and lots and lots of laughing.
The final highlight from 2012 was being ready for a new dog. We brought "George" into our family at the end of the year and he is bringing so much joy into our lives. Now that we have a dog again, our home seems complete. George is especially a pleasure after getting some invaluable tips from a very talented dog trainer. Now, we have a respectful companion who will give and get lots and lots of snuggles!
My "Low" from 2012 is the loss of two friends. We lost my sweet friend, Trycia, after a 6 year battle with cancer. I think of Trycia nearly every day. I hate that she is no longer sharing her laugh with us here on earth, but I am convinced that she is dancing with the angels in heaven. We jokingly say that Trycia "photobombed" this picture during her Life Celebration at her parents house. There is just no doubt that "Trowsh" (our nickname for her) is watching over us.
Also, our friend Steve, died unexpectedly after a routine knee surgery leaving behind his amazing and beautiful wife and young son. We search for explanations "why" and there isn't much of an answer. But, Steve lived his life with a big personality and a ton of love. His loss reminds me to cherish every second.
I start each new year, like many, with a short list of resolutions...or goals, as I like to call them. I'm good with goals. I understand goals. Last year, my Resolution list was this:
2012 Resolutions:
1. Live with less "stuff", by purging more, setting up better organization systems and sticking to them!
2. Make more money!!
3. Face the tasks that I usually run from.
4. Stop taking things personally.
5. Take more pictures.
I can honestly say that most of these worked out...maybe with the exception of the money one. So, that one is going back on my list this year and I am determined to make progress in that area! Despite a few arguments and some redefining of what's important, I have been reducing clutter and creating better organization. My business even purchased a storage space for all of our event materials that were cluttering up both mine and Karen's garages. I've been tackling the scary, black-cloud tasks and have ticked quite a few off the list. We are almost caught up on taxes, our insurance is in full swing, and I have appointments for a mammogram and a living trust. I did well with not taking things personally. There will always be moments in question, but overall, I was able to let my things be "mine" and for others' things to be "theirs". I definitely took more pictures this year. In fact, I made quite a documentation of the year. I'm still learning how to take better pictures, but I'm improving and enjoying it along the way. I love that I can look back on a photo and have that little piece of time as a frozen memory to be cherished.
This year, I'm planning on taking some risks. So, my New Year's Resolution list for 2013 is:
1. Make more money!!!! (I've moved this to the top of the list and added two extra exclamation points. This is bound to help, I'm sure.)
2. Launch the new division of my Party business. There is a LOT to do, and more will be revealed as it's time, but there is a new division and there WILL. BE. A. LAUNCH. :)
3. Write. I am going to explore this part of my "talents". At the urging of my parents and a close friend, I am going to see if I could actually write something that might get published. I am going to try. I am going to go through the process and see what happens. If nothing else, I know there will be life lessons learned in it.
4. Work more on my spiritual practice. Daily prayer, affirmations and a firm commitment to a church community have always helped keep me centered. Yet, my humanness easily sidetracks me and I find myself getting out of the habits that benefit me most.
5. Plan for fun. Make weekly, monthly, bi-annual and annual plans for FUN. Whether it be a pedicure with a friend, a playdate with my boys, or a concert in the park, I am going to add "Fun" to my to-do list. This way, I'll spend less time feeling stressed out and in need of a break.
It takes a village, so I'm counting on so many of you to help keep me accountable. I need your support and I need your encouragement. I promise to do the same for you.
Happy New Year!
Some of my favorite moments from 2012:
My boys loving on each other. The best.
Family themed Halloween costumes
Pool bound with my baby
Watching my firstborn enjoying the pool
Celebrating a great friend's wedding with my honey
You're never too old to make your Mom a macaroni picture frame.
My boys and me at their Fifth and Second Birthday party.
Cherish the idea of a new year, new beginnings and new adventures awaiting us all...
The Highs of 2012:
Despite my worries that maybe, just maybe, Elijah would never be able to feed himself (not a real worry, of course. Just that momentary impatience waiting for a milestone to happen), he began self-feeding early in 2012. Now he uses a spoon well, drinks from sippy cups, and joins us for dinner out without much hassle. He's a pretty great eater and seems to have very few food aversions, which I love. Even his initial tactile defensiveness seems to have fallen by the wayside. By the end of 2012 he was walking with assistance (helping hands or furniture and push toys), crawling fast, communicating through sign language and sounds, and performing the majority of the hand moves for the circle time songs at school. It's been a big year.
I ran a mud run. This wasn't something that was ever on my bucket list, but ended up holding some significance this year. I learned that a mud run, like life, can have you surrounded by friends but ultimately it is still a personal journey: physically, mentally, emotionally. I finished the run with the confidence that I could tackle any obstacle and do it completely surrounded and supported by a wonderful group of friends. Plus, we got super muddy. Which is totally unique for a grown woman. Unless it's part of a spa treatment. Just sayin'...
After a long, and fairly arduous process, Christian started Kindergarten at our school of choice! Kindergarten is proving to be an exciting and occasionally challenging part of life. Christian is like a little sponge with all he is learning. Academically, he is doing great, with the social aspects as the biggest challenges. Learning to work out the social complications that school provides will be a lesson that he'll deal with...well, let's face it, ALWAYS. Might as well start now.
We also transitioned Elijah from having home-based therapy to a center-based therapy program, which has been absolutely amazing for him. He loves school, has made huge strides in the short time he has been there and his therapists absolutely adore him. I couldn't be happier that we made the switch. It was bittersweet to say goodbye to the therapists who have been with us since he was an infant, but in hindsight, he was ready for something new- with the best part being the social interaction he gets with the other toddlers in the program.
I've had some professional highs as well. I celebrated one full year with my business partner and dear friend, Karen. We make a great team, and it's been a pleasure discovering where our different strengths lie and how to best use them. I'd hoped that our partnership would immediately translate into more business and improved prosperity. It isn't an immediate process, but the things we learned, grew and uncovered this year has laid the ground for some exciting things. Moving our business forward, while continuing to balance the demands of family life is our biggest challenge and yet, we are moving forward and making progress that both Karen and I are proud of. I am very excited and hopeful that the foundation we've laid this year will bear much fruit in 2013!
2012 was an incredible year for friendships. The struggles that 2011 held, shuffled down into something secure. I am so insanely blessed by the girlfriends I have, and we seem to be at a point where we are all confident and appreciative of what we have. Most of my circles cross over each other and it's a happy place. The book club I'm part of has morphed a bit from it's original beginnings, but it is bringing new and interesting people into the fold. I send out an extra special Thank you to my girlfriends for making 2012 so much FUN: Big birthday celebrations, holiday parties, carnivals, snow adventures, ice skating, mud runs, breakfast dates, cocktail hours, and lots and lots of laughing.
The final highlight from 2012 was being ready for a new dog. We brought "George" into our family at the end of the year and he is bringing so much joy into our lives. Now that we have a dog again, our home seems complete. George is especially a pleasure after getting some invaluable tips from a very talented dog trainer. Now, we have a respectful companion who will give and get lots and lots of snuggles!
My "Low" from 2012 is the loss of two friends. We lost my sweet friend, Trycia, after a 6 year battle with cancer. I think of Trycia nearly every day. I hate that she is no longer sharing her laugh with us here on earth, but I am convinced that she is dancing with the angels in heaven. We jokingly say that Trycia "photobombed" this picture during her Life Celebration at her parents house. There is just no doubt that "Trowsh" (our nickname for her) is watching over us.
Also, our friend Steve, died unexpectedly after a routine knee surgery leaving behind his amazing and beautiful wife and young son. We search for explanations "why" and there isn't much of an answer. But, Steve lived his life with a big personality and a ton of love. His loss reminds me to cherish every second.
I start each new year, like many, with a short list of resolutions...or goals, as I like to call them. I'm good with goals. I understand goals. Last year, my Resolution list was this:
2012 Resolutions:
1. Live with less "stuff", by purging more, setting up better organization systems and sticking to them!
2. Make more money!!
3. Face the tasks that I usually run from.
4. Stop taking things personally.
5. Take more pictures.
I can honestly say that most of these worked out...maybe with the exception of the money one. So, that one is going back on my list this year and I am determined to make progress in that area! Despite a few arguments and some redefining of what's important, I have been reducing clutter and creating better organization. My business even purchased a storage space for all of our event materials that were cluttering up both mine and Karen's garages. I've been tackling the scary, black-cloud tasks and have ticked quite a few off the list. We are almost caught up on taxes, our insurance is in full swing, and I have appointments for a mammogram and a living trust. I did well with not taking things personally. There will always be moments in question, but overall, I was able to let my things be "mine" and for others' things to be "theirs". I definitely took more pictures this year. In fact, I made quite a documentation of the year. I'm still learning how to take better pictures, but I'm improving and enjoying it along the way. I love that I can look back on a photo and have that little piece of time as a frozen memory to be cherished.
This year, I'm planning on taking some risks. So, my New Year's Resolution list for 2013 is:
1. Make more money!!!! (I've moved this to the top of the list and added two extra exclamation points. This is bound to help, I'm sure.)
2. Launch the new division of my Party business. There is a LOT to do, and more will be revealed as it's time, but there is a new division and there WILL. BE. A. LAUNCH. :)
3. Write. I am going to explore this part of my "talents". At the urging of my parents and a close friend, I am going to see if I could actually write something that might get published. I am going to try. I am going to go through the process and see what happens. If nothing else, I know there will be life lessons learned in it.
4. Work more on my spiritual practice. Daily prayer, affirmations and a firm commitment to a church community have always helped keep me centered. Yet, my humanness easily sidetracks me and I find myself getting out of the habits that benefit me most.
5. Plan for fun. Make weekly, monthly, bi-annual and annual plans for FUN. Whether it be a pedicure with a friend, a playdate with my boys, or a concert in the park, I am going to add "Fun" to my to-do list. This way, I'll spend less time feeling stressed out and in need of a break.
It takes a village, so I'm counting on so many of you to help keep me accountable. I need your support and I need your encouragement. I promise to do the same for you.
Happy New Year!
Some of my favorite moments from 2012:
My boys loving on each other. The best.
Family themed Halloween costumes
Pool bound with my baby
Watching my firstborn enjoying the pool
Celebrating a great friend's wedding with my honey
Dancing with Elijah. Enough said.
You're never too old to make your Mom a macaroni picture frame.
My boys and me at their Fifth and Second Birthday party.
Cherish the idea of a new year, new beginnings and new adventures awaiting us all...
Subscribe to:
Posts (Atom)