A real eye opener, I just wish my eyes were closed

IMG_6308From the very beginning, I’ve said Greyson is going to do anything and everything, just at his pace.  Well today, just 15 minutes ago, I learned he won’t be able to do EVERYTHING.  Greyson and his little brother are jumpers and climbers so automatically I thought “I’m putting these kids in gymnastics”.   I just needed to wait until they were the right age and until Greyson got a spinal x-ray to check for atlantoaxial instability, another damn diagnosis that children with Down syndrome can be diagnosed with.  Well I just got off the phone with his pediatrician and she said #1 just because his x-ray is fine THIS time, doesn’t mean he won’t develop atlantoaxial instability later and #2 that chin to chest tumbles and the like are off the table FOREVER.  I don’t know why, but this has made this mama very sad.  I’ve always envisioned taking my boys to gymnastics, something I did as a child (I remember the ugly navy leotard with the v shaped stripes.), and watching them learn more elaborate jumps and tumbles than what they attempt at home.  To know that there is something my son can’t do, isn’t allowed to do, is hard to accept.  This just emphasizes the Down syndrome diagnosis yet again.   It wouldn’t be so hard to accept if it wasn’t something I actually wanted for Greyson.  Now knowing it’s not an option, well it hurts.  Sure, my son can participate in other extracurricular activities like t-ball and therapeutic horseback riding, but, well, it’s just not the same.  When you get the Down syndrome diagnosis, you say to yourself “watch this world, my kid is going to do anything and everything your kid can do”, but now I know there really are limits on what he can do.  Maybe it’s not the gymnastics specifically that bothers me, maybe it’s just knowing there are things he will never be able/allowed to do.  Sure, I figured there would come a day when we learned Greyson was unable to do something, maybe riding a bike, maybe getting his driver’s license, but I wasn’t expecting the limits to come at three years old.

Anyone want to buy a brand new, in the box 7′ trampoline with enclosure? Whomp whomp 😦

 

Dear Perfect Parent,

I thought about leaving this blank because no one should have clicked on the link with a title like that…..because there is no such thing as the perfect parent.  Parents, let’s worry about our own parenting skills before judging strangers for theirs. After the accidental, tragic death of a child, I notice how others feel free to judge the parents, blaming them for the accident.  The most recent story was the little boy who died while getting his head stuck at the revolving restaurant.  Holy shitola, the comments were horrible.  “Where were the parents?”  “This is the neglectful parents fault, but I bet they will sue the restaurant” and so it went.  As a parent to two non listening toddlers, I don’t judge them or the parents who forgot their child was in the car due to a change in routine.  I will NEVER say these things will never happen to me because as observant/watchful as I am, my boys make it their life’s mission to test their limits….and my patience :).   I know my own limitations and as much as I keep an eye on my kids, one is always running away from me at a park (Just three days ago while at an elementary school playground, Gavin ran off the playground and ran towards an open field.  I yelled for him to stop and come back but he just kept going. By the time I scooped up Greyson and chased after Gavin, Gavin wasn’t around the side of the building like I expected.  I screamed his name in a panic filled voice and ran around another corner where thankfully he was, trying to open a school door.), running out the unlatched front door (There have been times I thought I had locked the latch to the screen door, but had not.  One of those times, Greyson, the worst culprit of running away, got out the front door and THANK GOD was just sitting in the stroller outside by the front door.  OMG, I cried thinking about what could have happened), or running towards the street when trying to put them in the car.  I’ve been lucky because right now I am faster than they are.   Because I know their tendencies, I try to be more diligent, more careful, but I’ve made mistakes.  Do you know why?  Because I am not perfect….. and nor are you so let’s judge less and sympathize/empathize more.

Ok, I’m going to say it…..even after a friend suggested I not. I’ve been sitting on this one for awhile. To say it out loud would surely offend some, upset others so I’ve kept quiet. Well I’m going to keep it real folks. I was having lunch with another special needs mom a few weeks ago. We were talking about our children with special needs and she said “I wouldn’t change them for the world.” I responded with “I would.” She looked stunned, her mouth actually dropped open and said “You would?!” I said “Hell yeah, I would.” She said ‘You’re the first person to ever say that.” She then said “I would too.” I hear people say all the time about their child with special needs, specifically Down syndrome, “I wouldn’t change him for the world”or “I wouldn’t change anything about him”. Maybe these parents actually mean it, maybe they believe they were given the child they were meant to have, extra chromosome and all, the whole God doesn’t make mistakes thing. I promise you folks, you will never hear me make that statement because if I could change it, I damn sure would. If I could have Greyson’s extra chromosome surgically removed, we’d have already done so. Why would I want my son to endure the things he is going to endure all his life, things like difficulty communicating, taking longer to learn things, possibly unable to drive, possibly unable to reproduce, may or may not be able to live independently? Who wants that for their child?! I can hear people now, “Oh, but individuals with Down syndrome have come a long way. Did you hear about the guy going to college or the guy who started his own crazy sock business?” You’re right, individuals with Down syndrome have come a long way, but people, when these stories make the news, that means it’s rare, uncommon. To be clear, I love Greyson with all of my being. As a matter of fact, although I love all my boys equally, Greyson has a very special place in my heart. With or without the extra chromosome, my love for my son would remain the same, have no doubt. I’m just honest enough to admit that his life, our lives would be a lot easier without that extra chromosome, so yeah, there is ONE thing I would change about my son. My phrase would be “I would change one thing about him for the world”, because if I could, I would.

Source: Ok, I’m going to say it…..even after a friend suggested I not. I’ve been sitting on this one for awhile. To say it out loud would surely offend some, upset others so I’ve kept quiet. Well I’m going to keep it real folks. I was having lunch with another special needs mom a few weeks ago. We were talking about our children with special needs and she said “I wouldn’t change them for the world.” I responded with “I would.” She looked stunned, her mouth actually dropped open and said “You would?!” I said “Hell yeah, I would.” She said ‘You’re the first person to ever say that.” She then said “I would too.” I hear people say all the time about their child with special needs, specifically Down syndrome, “I wouldn’t change him for the world”or “I wouldn’t change anything about him”. Maybe these parents actually mean it, maybe they believe they were given the child they were meant to have, extra chromosome and all, the whole God doesn’t make mistakes thing. I promise you folks, you will never hear me make that statement because if I could change it, I damn sure would. If I could have Greyson’s extra chromosome surgically removed, we’d have already done so. Why would I want my son to endure the things he is going to endure all his life, things like difficulty communicating, taking longer to learn things, possibly unable to drive, possibly unable to reproduce, may or may not be able to live independently? Who wants that for their child?! I can hear people now, “Oh, but individuals with Down syndrome have come a long way. Did you hear about the guy going to college or the guy who started his own crazy sock business?” You’re right, individuals with Down syndrome have come a long way, but people, when these stories make the news, that means it’s rare, uncommon. To be clear, I love Greyson with all of my being. As a matter of fact, although I love all my boys equally, Greyson has a very special place in my heart. With or without the extra chromosome, my love for my son would remain the same, have no doubt. I’m just honest enough to admit that his life, our lives would be a lot easier without that extra chromosome, so yeah, there is ONE thing I would change about my son. My phrase would be “I would change one thing about him for the world”, because if I could, I would.

Ok, I’m going to say it…..even after a friend suggested I not. I’ve been sitting on this one for awhile. To say it out loud would surely offend some, upset others so I’ve kept quiet. Well I’m going to keep it real folks. I was having lunch with another special needs mom a few weeks ago. We were talking about our children with special needs and she said “I wouldn’t change them for the world.” I responded with “I would.” She looked stunned, her mouth actually dropped open and said “You would?!” I said “Hell yeah, I would.” She said ‘You’re the first person to ever say that.” She then said “I would too.” I hear people say all the time about their child with special needs, specifically Down syndrome, “I wouldn’t change him for the world”or “I wouldn’t change anything about him”. Maybe these parents actually mean it, maybe they believe they were given the child they were meant to have, extra chromosome and all, the whole God doesn’t make mistakes thing. I promise you folks, you will never hear me make that statement because if I could change it, I damn sure would. If I could have Greyson’s extra chromosome surgically removed, we’d have already done so. Why would I want my son to endure the things he is going to endure all his life, things like difficulty communicating, taking longer to learn things, possibly unable to drive, possibly unable to reproduce, may or may not be able to live independently? Who wants that for their child?! I can hear people now, “Oh, but individuals with Down syndrome have come a long way. Did you hear about the guy going to college or the guy who started his own crazy sock business?” You’re right, individuals with Down syndrome have come a long way, but people, when these stories make the news, that means it’s rare, uncommon. To be clear, I love Greyson with all of my being. As a matter of fact, although I love all my boys equally, Greyson has a very special place in my heart. With or without the extra chromosome, my love for my son would remain the same, have no doubt. I’m just honest enough to admit that his life, our lives would be a lot easier without that extra chromosome, so yeah, there is ONE thing I would change about my son. My phrase would be “I would change one thing about him for the world”, because if I could, I would.

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Reminder: There’s TWO little ones in the house

I originally named this blog, Adventures with Greyson. well because there wasn’t a Gavin yet :).   Then after Gavin was born, I decided to change the name to include him as well.  I did this for several reasons:  one, to show we have a life outside of Greyson’s diagnosis and two, Gavin is just as important to our family, to this blog as Greyson.  Since Greyson has been with us, his future, and the uncertainty, has consumed me.  I’ve shared these concerns many times so no need to bore you with them yet again.  A fear I’ve had about Gavin, however, is him being pushed to the side, that his brother’s needs would take precedence…..and i feel it has :(.  Greyson is a needier child, jealous of his brother and any attention he may get.  To be clear, Greyson is still a wonderful little boy :), he’s just doing what every two year old does…..wants to be the center of attention :).  I’ve noticed myself gravitating towards Greyson more because he is the one who cries for me first, reaches for me first, or, in general, just wants/needs more attention than Gavin.  Looking back, I feel this isn’t fair to Gavin, that he is getting short changed just because he is a more even tempered, happy go lucky kid and is content to be “in the background.”  How do other parents handle this?  How do they divide their time with two differently tempered kids?  Starting today, I am going to alternate who i go to first.  It may not seem like much, but I want both boys to feel they come first, just every other day lol.

I want to spend the remainder of this blog telling you about my wonderful Gavin Jensen.  Gavin is the cutest darn kid. He is a sweet little boy who, even at 4:30am lying in our bed, can still make us laugh.  He is full of big, toothy smiles.  His laugh is infectious.  I mean did you see that video of him laughing?!  ADORBS!!  His demeanor really is “chill”.   His brother could hit him on the head with whatever object he has in hand, yet Gavin still watches him with a smile on his face.  (later though, not during the hitting ;)).  He still follows his big bro around the house.   In case you wondered :), I love both of my Gs equally and BOTH of them make our home complete!  cute model

but since this blog is about Gavin, can i just say again how freakin’ adorable he is?  🙂

starting with a smile and a wave

many years ago, probably 15 years or more, i was over at a family friend’s house who had family visiting.  in that visiting family was a little girl with special needs.  she was about nine years old if i had to guess and was non verbal.  i remember very clearly that i felt very uncomfortable around her.   i remember my sister interacting with her, yet i stayed off to the side, never acknowledging the little girl.  why?  i have no idea, maybe i was ignorant, immature, and/or unsure how to interact with her, who knows.  fast forward to today, now i am a parent who has a child who has special needs herself.  one of my biggest fears for greyson is that he will be made to feel he is different, that he isn’t worth attention from others, that he will be excluded from classmates’ birthday parties and play dates.  i keep reading these stories about children with special needs, mostly autistic, who are excluded from play dates, birthday parties, and social events in general.  oh, i am sure there are exceptions to this or maybe these stories are the exceptions (here’s hoping anyway), but it got me to thinking.  i have this strong desire to do something, that i want to make sure every child with special needs is included in some way.  while i know i can’t do this for every child, i can do this for every child that i encounter.  i never want a child to come home from school and tell their parents that they didn’t get an invitation to greyson or gavin’s birthday parties, play dates, or sleep overs.  i don’t want a child to ever doubt their worth, i don’t want them to ever feel alone, excluded, different.  i feel like this is my purpose….i just don’t know how i am going to achieve this yet, but step one, next time i encounter a child with special needs, i WILL acknowledge them, even if it’s just starting with a smile and a wave.

If I Could Go Back To The Day

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If I could go back to the day 18 months ago when I received what I deemed the most devastating news ever, that my newborn son had Down syndrome, I would say “girl, you shed an extreme amount of unhappy tears on the day that was supposed to be one of the happiest days of your life and you will regret doing so, will actually feel guilty doing so.”  If I could go back to the day, I would tell myself “just wait, you are going to experience a need to protect like you’ve never felt before.  You will fully understand what the term “mama bear” means.”  If I could go back to the day, I would tell myself “just wait, Greyson will ALWAYS be able to turn your frown upside down.”  If I could go back to the day, I would tell myself “Greyson is going to teach you patience, empathy, and compassion, the likes you didn’t know you possessed.”  If I could go back to the day, I would tell myself “be warned, you are going to realize your special needs son is special, but not because he has an extra chromosome!”  If I could go back to the day, I would tell myself “don’t stress about what his future holds, cherish his preciousness NOW.”  If I could go back to the day, I would tell myself “don’t read the crap on the internet about Down syndrome and what “they” say will happen.  I assure you future self, Greyson is going to amaze you with his ABILITY!  You are going to use the term “quick study” when referring to your little man.”  If I could go back to the day, I would tell myself “i know you are going to worry about what strangers whisper/say about your son, but you will become oblivious to those around you.  You won’t look for the looks, the stares. Actually what you will see are strangers who are smitten with your blonde hair, blue eyed baby boy!”  If I could go back to the day, I would tell myself “just wait, you are going to be so proud of your son and excited when he reaches each milestone.  You are going to become his biggest cheerleader, proudly touting each and every accomplishment.”  If I could go back to the day I got Greyson’s diagnosis I would simply say “you, with the love and support of your family and friends, got this!  You are going to be fine.  More importantly, HE is going to be fine, …..actually better than fine!”

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jerk

it happens and happens often, greyson james prefers daddy to me, mommy, the one who carried him for 9 LONG months and pushed his big head out of my little vagina (insert jokes if you must). daddy walks in the room and it’s as though his savior has walked in, he gets the biggest damn smile on his face. sure, greyson james lights up when I take him out of his crib, but that’s just because I have rescued him from his mini prison. sure, he reaches for me when I take him out of his exersaucer, but that’s just because I rescued him from that confinement as well….or maybe he thinks he is about to get fed :). if daddy and I reach for him, he goes to daddy, the almighty, wonderful daddy. would I prefer him to shun his dad, flip him the bird? wellllll….ok, I kid. I now know what the saying chopped liver means and feels like though, lol. all kidding aside, well mostly kidding anyway, I do think it’s wonderful that greyson has such a great daddy and that greyson realizes it too…..but damn, could I get a little of that bright smile WHILE daddy is in the room too?! jeesh! daddy tries to make excuses for being the preferred one, why greyson doesn’t reach for me when daddy is holding him (he’s tired, he’s blah blah blah) and while I appreciate the effort, I also know deep down he is smiling smugly. jerk 🙂

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any suggestions?

when I first started adventures with greyson there was only greyson, little brother gavin wasn’t in the works yet :). having a blog that is dedicated to greyson seems unfair to his little brother. I don’t want gavin to ever feel second best in our household. gavin is just as important to our family as greyson is. when we decided to have another child my thought process was it will be good for greyson. he will have someone to follow, learn from. his sibling will also have this back should the need arise. while I still hope for that, it isn’t gavin’s purpose in life nor his responsibility. if he chooses to be a “big” brother, great! if not, that’s ok too. my only real hope is that they are very close as brothers, thick as thieves as the saying goes. I hope there are many adventures with greyson and gavin, with and without me! 🙂 adventures with greyson’s name will soon be changing, as soon as I can think of something cute and clever that incorporates both kiddos and that wordpress accepts. Any suggestions?165

I’ve become THAT mom :)

I’ve become THAT mom and I have the car decal, t-shirts, and will eventually have the tattoo and license plate to prove it. I’ve become THAT mom, the mom who wants the world to know that yes, my son has Down syndrome so if I’m out and about wearing my t-shirt and/or with Greyson James and you have questions, ask away. I welcome the chance to spread awareness, better yet acceptance. I welcome the world to see Greyson for who he really is, not for what he has: the little boy full of smiles and laughs, the little boy who really does make a bad day good. Although having Down syndrome doesn’t define him, I’m okay with him being the poster child for it. I really think he could change minds, change the perception….and that’s my goal. Yep, I’ve become THAT mom! 🙂

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