31 for T21: A Down Syndrome Family Photo...and Elvis is in the HOUSE!

The 30th day of October is quickly coming to a close, in fact if I don't type my little heart out it will soon be midnight...leaving one day left for blogging for Down syndrome Awareness. My attempt at 31 posts over the course of the month came very short this time around but I attempted...and I had fun reading everyone's posts and meeting new friends along the way!

....In fact, "meeting friends along the way" is what I want to end my 31 for T21 attempt with. In the last 3 1/2 years I have met some really truly amazing families....families I would have never have met had Reid not shown me. Families near and far.... down the street, the next county over, across the US, and internationally. I love knowing these families, I love seeing their little almond eye shaped beauties and knowing immediately that we share an unspoken bond that comes from a very deep emotional place within us because of our children who share that extra chromosome. It is extremely encouraging to me.

However, as I am walking deeper into this journey I am realizing that it is not just encouraging to have each other to go to and to glean from but it is vital. Without going into detail in this post we had an issue arise a week ago where a parent had/has concerns about Reid being in the "typical" preschool class with her daughter. As we have been sorting through this big ugly bump I was able to call upon so many of those "friends I've met along the way" for support, advice, and resources. It was vital...especially those first few days where this became a very emotional issue for me. Those friends helped equip me with resources, and tools, and special needs laws to help me navigate this appropriately.

I call that friendship...but my friend Kele calls that family. She wrote about that here. She even went on to create a "Down syndrome family photo" shown below. Can you see little Reid in there? ...he is next to one of his best gal pals! I love that as I scan her picture I can name so many of these kiddos...had you told me that I 'd be able to do that on the day he was born I'd have told you you were bonkers.

Your family photo might look a little bit different, maybe you've connected and clicked with different people...or maybe you haven't connected yet with others...and if that is the case I would really encourage you to reach out and to find a network of other families who also have a child with Down syndrome because I truly believe we are each other's best resources. There is a huge resource here on the internet of Down syndrome parent bloggers but I would also encourage you to find and connect with people in your immediate area because it is also good to connect in the flesh...and to begin to develop friendships for your child with other extra chromosomally kissed kiddos as well as their other friends.

...When things have calmed down and we know how things are going to play out with preschool I will blog about it because we are learning some really important lessons through it that I'd love to share. Until then....check out the king himself!

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Elvis.....................is in the HOUSE!!!!

a sneak peek into Reid's Halloween costume

This was Reid's big finale pose!

31 for T21: More Alike Than Different

A CHOCOHOLIC!!!!!!!!

I have read in many books and been told on more than one occasion to, "Remember that your child with Down syndrome will be more like you, and your family, than different"...How is this for "Like me"??? A chocolate addict after my own heart. Reid, you and Mommy are going to have lots of fun!
The entry above was from my "archives" and was actually the 3rd post I ever wrote...back in August of 2008. Awww, he's changed so much. He can even say chocolate now though it sounds more like chockitts.
In the vain of more alike than different I wanted to share our last year's entry in the National Down Syndrome Congress' More Alike Than Different campaign... I had actually forgotten we had even submitted it until we recently received our poster.

Hmnn, I'm having a hard time getting the image bigger but the poster says...

Who Loves to Read More, You or Me?

My name is Reid and I love..... to read! I love big books, little books, train books, truck books, pop up books, and especially.......giggle until you fall over books!

Yup, that's pretty much him!

Kids with Down syndrome are indeed more alike than different...

31 for T21: Ride 'Em Cowboy!

These pictures just make me giggle!! Reid's preschool brought in a pony for the day and apparently Reid wanted NOTHING to do with it. But, the photographer was very patient from what I understand and was able to get these two shots....and I am so glad, these are such a treasure to me!

Man, my little cowboy has sure grown... in the pictures below Reid was wearing a onesie that said "Little Cowboy" on it at about 8 months. The first one in this set makes me laugh because of what you can't see, the photographer was making all these crazy sounds and flashing toys for Reid to respond to and Reid...well, he wanted nothing to do with him. I think maybe Reid was ticked at the way the guy positioned his little hand on his ear and made it all bendy...the look on his face is like, "Seriously dude, after what you just did to my ear...you ain't getting nuttin out of me after that!" ;) ... I just love his fuzzy hair in this picture though....oh and Luke's hair (that was back in the day when his hair had to be absolutely perfect or he would get so mad if even one little hair was out of place). I'm sorry but I just have to say it, it's a mom's prerogative...they are so stinkin cute!!

31 for T21: Harder Than I Thought....

Well, I have debated and debated about whether or not I should blog about the documentary I referred to in the last post. I am intentionally not going to put the name of the movie in this post because I don't want my blog to bring people looking for the movie..... because I do not want anything I write to be taken the wrong way or to be offensive in the least.
But, if I were to be completely honest I had a harder time watching some parts of the documentary than I thought I would. I think because I have "arrived" so to speak in the baby and toddlerhood aspect of parenting a child with special needs...."arrived" in that I am here and it is not scary like I once feared while laying in that hospital bed post diagnosis. It took me awhile to get my legs about me but I did and I am here and it is all good. However, I realized while watching the documentary that I am still a little nervous about Reid's future. That surprised me. I guess while watching I was reminded that we will always have hills to climb and that made me a little sad. Not that I didn't already know that but it hit me in a very soft spot....the spot where moms ferociously want to protect their children and ferociously want to ensure that their child has every opportunity to live out their dreams.
Honestly most days I forget Reid has Down syndrome, it is really quite a non issue over here and when I look to Reid's future I guess I subconsciously have expectations of him being able to hold a job and able to live on his own with buddies and I would love for him to find someone special to share his life with, that is a definite prayer of mine...all of those are. But, while watching the documentary I saw a very real reality for two families that was a little bit different from what I imagined and I had to come to terms with that may be our reality as well. Maybe, maybe not. But I had to sit with my feelings for a bit and I kind of felt like I was back in that new place again of processing what all this means for us, for our family, for Reid, and for his future as I did in the early stages.
What if he does always live with us...what kind of living arrangements will we need? What if he is able to live on his own, could we afford to buy him a place to live in? He can always work with Toby in the coffee roasting facility, Toby would love it, but what if he doesn't want to? Will he question why he doesn't have his own family? ...and all the other "what ifs" began to rest heavy on me. But, I know what the truth is and the truth is one day I will have "arrived" in that future stage as well and I will look around at my surroundings and I will say the same as I do now..."I am here and it is all good". But, it is a process mentally and emotionally and sometimes things weigh more heavily on your heart than other times. This happened to be one of those times.
Then the very next day, as life does these things sometimes... a song came on the radio that I had not heard in a long time. The very song that played in the car ride home on New Year's Eve 2006 as we were bringing our newborn home from the hospital for the first time... a song called "Take My Hand" by The Kry. As I sat and listened to the song my mind went right to the vision of all of us strapped in the car that New Year's afternoon, quietly pulling out of the parking structure and hearing the words being sung on the radio... I remember asking Toby if he was listening but I knew he was as I saw the streams of tears running down his cheeks. So, here I was now almost 4 years later sitting in my car mulling over the movie and up comes that very song again. I had to smile because it was such perfect timing for a perfect reminder that no matter what, no. matter. what. the future holds it will indeed be okay, we'll figure it out.
This was an appropriate song for our initial car ride home to start our new life back in 06... and it was an appropriate song for me to hear again this week.... (pause the music at the bottom of the blog before clicking on the song Take My Hand)


Take My Hand (Lyrics)
I know there are times
your dreams turn to dust
you wonder as you cry
why it has to hurt so much
give Me all your sadness
someday you will know the reason why
wih a child-like heart
simply put your hope in Me

Chorus:
take My hand and walk where I lead
keep your eyes on Me alone
don't you say why were the old days' better
just because you're scared of the unknown
take My hand and walk

don't live in the past
cause yesterday's gone
wishing memories would last
you're afraid to carry on
you don't know what's comin'
but you know the one who holds tomorrow
I will be your guide
take you through the night
if you keep your eyes on Me

take My hand and walk where I lead
keep your eyes on me alone
don't you say why were the old days better
just because you're scared of the unknown
take My hand and walk where I lead
you will never be alone
faith is to be sure of what you hope for
and the evidence of things unseen
so take My hand and walk

just like a child
holding daddy's hand
don't let go of mine
you know you can't stand on your own

31 for T21: Will Reid get married?.... maybe

Okay...so I'm totally stinking at blogging all 31 days...but I'm still going for as many posts as I can.
But...real quick...almost forgot this is on tonight..actually right now 8:00 HBO

31 for T21: Our Children are Gifts....no matter how they're packaged

**Please note that you should pause the music at the bottom of my blog before viewing the Gifts video below......and it just may be necessary to have tissue near by!! ;)
I love the beauty and sweetness that oozes from this video...and the song, oh my goodness it gets me every time!! I first saw this about 3 years ago...and as I just re-watched it it made me smile to myself because as I saw these beautiful faces again I realized that I KNOW so many of these kiddos now.... thanks to their beautiful moms and dads who I have had the privilege of meeting through our blogs!

31 for T21: Will He Look Like Us?

Neither Toby nor I knew much about Down syndrome before Reid was born. I actually made him promise he would not start any research until we were both ready. I felt really strongly that I did not want to know Down syndrome.... I wanted to know my son.
Probably the only piece I really knew previously was that there were facial characteristics associated with Ds and this lead me to wonder if Reid would look like us... would Luke and Reid resemble each other?
Well, a few months back one of my brothers commented on this picture of me at 3 that was sitting on my moms bookcase and how much it looked like Reid. Well....I declare he was right. Perhaps it is the longer hairstyle but I do believe he looks a lot like me. That makes me happy, I love how genetics leaves a footprint of who we belong to!
And what about these two?..... look at this side profile and tell me you can't tell they are brothers?Have a said lately how much I love these two??
In an effort to aid in Down syndrome awareness below is a list of facial characteristics commonly found in individuals with Ds.... though an individual may have only a few or all of these.
Almond-shaped eyesSmall noseSlightly flattened bridge across the noseSmallish ears, positioned slightly lower on the head, with a small fold at the top of the earMouth may be smallSlightly protruding tongue, due to low muscle tone and or shallow roof of the mouthTeeth may be smaller Flattened back of the head
** I have to put a little input in here though because I don't know why but I had a hard time typing those above. One in particular...the slightly protruding tongue. As I have scoured blogs and spent time with Reid's buddies I have not seen kids with protruding tongues unless they are really tired...heck I'm sure I even do that when tired! ;) But, I point it out because our children are born with low muscle tone which contributes to the tongue finding its way out onto the bottom lip on occasion BUT.... our children receive early intervention via occupational, physical, and speech therapy that those 10, 20, 30 years ago did not receive so you do not see this characteristic like we once did.

31 for T21: The Itsy Bitsy Spiders...Got Talent

The Itsy Bitsy Spider not only went up the water spout.......but he also ROCKED the house, at least this house.






I had to laugh out loud yesterday when Reid came proudly marching out of preschool sporting his new spider hat!

31 for T21: I Would Choose My Son a 100 Times Over

In my last few posts I shared our story of finding out about Reid's diagnosis of Down syndrome...and though beginning this journey was indeed scary and it was indeed emotional and it was indeed not what I had anticipated for my son .............I would choose him over and over and over again extra chromosome and all! I would, I would absolutely choose this journey! I would choose to know this life that he has opened my eyes to. I would absolutely unequivocally choose him.
It is startling to me though that my choice is not statistically in the norm. Over 93% of these babies are aborted. 93%....wow, that is a staggering number. That is a number that tells me there are a lot of misconceptions about these amazing little people who grow into amazing adults who have much to offer to this world.
Absolutely, I would choose this precious gift of mine.....all. over. again.

31 for T21: A Conversation Between The "Me Then" When We Just Learned of Reid's Diagnosis and the "Me Now"

I previously posted this back in December right before Reid turned 3. As his birthday was approaching I began to realize just how far I have come in this journey which inspired this post.... I wanted to post it again during Down Syndrome Awareness Month in an effort to hopefully encourage someone whose child is newly diagnosed or to give a windows view into those first raw moments of hearing the words, "Your child has Down syndrome".

When we received Reid's diagnosis three years ago on the day of his birth 12/28/06, I wanted so desperately to know about things that were absolutely impossible for me to know at that point...I wanted to know if we were going to be okay, if he was going to be okay, would he die because of his heart defect, when would he walk, would I love him the same way I loved Luke, how was this going to affect Luke and what would their relationship be like, will he have friends, will he be invited to birthday parties, would Reid be able to go to the same preschool Luke went to, would I always be sad that he had Down syndrome, how would this affect my extended family, why me, why us?
Back then there was just no way I could have had answers to any of those questions, the only thing I could do was put one foot in front of the other and trust that all would be okay as I inched forward and learned about this new world I was placed into. However, now that I am three years out I have some of that knowledge I was craving for. If I had been able to have had a conversation with the "Me Now" back in those first few days or weeks and given myself a pep talk or straight answers knowing what I know now...it would have looked something like this.
The Me Then: They just told me Reid has Down syndrome, this has to be a mistake...I keep waiting for the doctors to come tell me they just checked the blood work and there was an error, but no one is coming in here and telling me that, everyone looks so sad. Why aren't they telling me it is a mistake??
The Me Now: Cheri he does have Down syndrome, in a few weeks you will have some tests run to see if he has a type called Mosaic but the answer is no, he has the traditional form of Trisomy 21.....but it is okay, you are going to be okay, I promise you. People in the hospital are quiet and seem sad because they don't know how to respond, and they are trying to let you digest the news I suppose.
The Me Then: But, no one has even asked us his name or congratulated us other than family
The Me Now: Sadly, you are going to find that most of your new friends you will be making who also have a child with Down syndrome experienced this same thing when their child was born, it is another thing you will have in common. But, you are feisty and though you can't imagine it now at one point you will speak with hospital staff to make sure things change. In a few months a book is going to be coming out called Gifts written by moms who have children with Down syndrome and how much their children enrich their lives....your mother-in-law, feisty in her own right ;), is actually going to become the "Gifts Fairy" at the hospital she is a labor and delivery nurse at....she purchases these books in bulk and keeps them in her locker and makes sure families are given these when a child with Down syndrome is born there....she wants to make sure no one has the same experience you had and wants to make sure these families know right away what blessings their babies are.
The Me Then: A cardiologist just came in the room and said they were going to take Reid down stairs for a chest x-ray and echo cardiogram...what is going on?
The Me Now: You will soon learn that nearly 60% of babies with Down syndrome are also born with a congenital heart defect. Your cardiologist is amazing and is going to take good care of Reid....he is going to come back in here and tell you that Reid has two holes in his heart and a defective mitral valve. What this means is that Reid will need heart surgery to correct these. Reid will need to have surgery when he is 7 and a 1/2 months.....and don't freak out on me but he will actually need a second heart surgery just before he is two as there are some complications with his mitral valve....but he comes out of both surgeries just fine. At this point I can't tell you if there is a third but he is doing great and no longer requires any heart medicine.
The Me Then: How is Toby going to handle this?
The Me Now: Cheri, seriously how can you even ask this...remember it is Toby that you married, the man with the biggest heart you have ever met. Toby is already 5 steps ahead of you in accepting this. Do you remember when you were dating and you were sitting out front of your house in his big red truck...and you asked him where he ultimately saw himself in his career in the coffee industry and he responded by saying he wanted a coffee roasting facility where he could employ people with disabilities? Well, today with Reid's birth and diagnosis a new course has been set and that dream is realized for Toby and your family in Maranatha Import Export and very soon he will be able to bring on their first employee with special needs. In a few days from now you and Toby will discuss that dream and how amazing it is that that was on Toby's heart long before you two even knew you were to be married let alone know that Reid would be in your future. Toby will whisper to you, "We need to move forward with that dream, because Reid and his friends need jobs some day". You will both cry and hold each other, but deep inside you both know that something bigger than you is being set in motion.
The Me Then: What about Luke...will he be disappointed that his brother has Down syndrome? Do we tell him right away or do we wait?
The Me Now: Luke is so amazing with his brother, he is perfect for Reid. You and Toby decide not to tell him for awhile, actually you don't tell him until right before Reid's first Buddy Walk at 9 months. You were afraid it would burden Luke and worry him, in a way I think you were protecting him by wanting him to love Reid wholeheartedly before you gave him the news....but even if you had given him the news earlier Luke would of still felt the same way about Reid....absolutely crazy about him! In fact Down syndrome doesn't bother Luke in the least, he actually acts like he has met a movie star when he sees someone else with Down syndrome and shouts out to alert you....umm yeah, you might want to talk to him about that one. ;)
The Me Then: What about our families, how do they handle it?
The Me Now: Well, let me put it this way, when you first bring him home from the hospital and a neighbor tells you they heard the bad news about Reid's diagnosis your father-in-law steps in and says, "No, there's no bad news here, this little guy found just the right family and we all have a lot of love to give him". And that is the case, your families love him and are excited with each new milestone he achieves. Early on your family asks you what they can do, if they can bring dinner, if there is anything you need... and you decide that what would help you the most is if they each read the book Babies with Down syndrome so they all had a resource on Down syndrome and knew what you were dealing with. You purchased the books and gave them out as late Christmas presents. You had the book too, but your mom is amazing and when she came over one day she brought something up she read in the book and you realize she is way farther ahead than even you. And your mother-in-law, she sees to it that you are stocked with every book on Down syndrome out there and purchases the most beautiful sign language cards and kit to get you started for when you and Reid are ready. No, no need to worry about your family...you have the most incredible extended family and support, not to worry a bit.
The Me Then: Will I always feel sad?
The Me Now: You will feel sad for awhile, you will actually feel a lot of very tough raw emotions and my best advice is to let yourself feel them, it is a natural part of accepting this diagnosis for your son. But, I have to tell you that you are mostly feeling these things because you are scared and don't know what to expect for yourself or for Reid. But no, you will not always feel sad. In fact, you will find yourself saying at one point, "If I knew then what I know now I would not have shed a tear". As I am writing this to you with knowledge of three years under my belt I can confidently tell you how much you love and adore this little guy and there isn't room enough for sadness. Though you feel so sad about his diagnosis now, you will soon see that his extra chromosome becomes a non issue....he is such an incredible blessing Cheri. You are about to gain a new perspective on life as a result of this diagnosis, you are about to become a stronger, more loving and compassionate you....a better you.

The Me Then: One thing that is making me sad is the fact that Reid won't go to the same preschool that Luke goes to....and we love it so much. It makes me sad that Reid won't have the same experiences as Luke.
The Me Now: Again, your assumptions are based on the unknown, remember you don't know a lick about Down syndrome yet! But, good news is.....your little Reid does go to the same preschool Luke did. You actually shared with Luke's preschool teacher right after Reid was born with tears in your eyes that he won't be able to go there, her response to you was, "You never know....". She reminds you of that on the first day of school as Reid wandered in to sit with the other kids and she gave you a big, "See, he did it hug".
The Me Then: When I look at him it is hard for me not to see the Down syndrome, will I always feel like this?
The Me Now: In about a month you are going to meet a family who also has a child with Down syndrome. Their child is a few years older than Reid and they will tell you that there will come a point that you will not even see the Down syndrome. You come to find this to be true as well a few months out, in fact you find it amazing when people come up to you at Disneyland or the grocery store and mention they have a neice or nephew or friend with Down syndrome and you wonder how they knew to say that to you.
.....I need to throw one other thing in, there comes a point where you find such beauty in Down syndrome, the features that once scared you you find absolutely adorable. In fact, I am not sure when this occurred but even though Reid's nickname is Bubbas you always greet Reid with arms stretched out and by saying, "Hiiiiiiiiiiiiiiiiiiii beautiful!!!!!". No, you don't see Down syndrome, you see Reid...and an absolutely beautiful little person that you feel so incredibly lucky to call your son.

The Me Then: Is all of this my fault? Reid was an invitro baby and I am feeling so guilty that maybe I brought this on?
The Me Now: Cheri, no invitro had nothing to do with it. It is a genetic fluke that can happen to anyone. However, you come to believe that he is not a fluke at all. Do you remember going through the process and praying that if you were to get pregnant that God would choose who you were to have....you trusted then that He would choose the child you were to have and you have to choose to believe that now as well. Your infertility specialist confirms this to you in a few days...you ask her the same question and her response will be to you that she can't explain why he made it and not his twin who you carried early on. She told you the only way she could explain it was that he was suppose to be here.
The Me Then: This isn't how I pictured my life, I don't know how to be a parent of a child with special needs.
The Me Now: No one pictures this for themselves and chooses it....at least not at first. Cheri you will fall so in love him with that you don't care about his extra chromosome and you wouldn't want to change a thing about him. You will be so in love with him and his friends that it will absolutely break your heart when you learn that babies in other countries born with Down syndrome are cast aside, put in orphanages and institutions where their outlook is grim if not adopted. Seriously, you who is laying here so heavy hearted and worried would choose this again, you'd choose Reid and his extra chromosome all over again, and you'd adopt every baby out there in those orphanages if you could. And, interestingly enough most of the people who adopt children with Down syndrome already have a child with Down syndrome....so you are about to learn what others parents already know, these babies are not burdens as society may indicate they are beautiful souls with so much love and life to give to this world.
The Me Then: Will I love Reid the same way I do Luke?
The Me Now: Cheri, I completely understand that question because I think it is more common than not to wonder if you could ever love another child as much as you love your first....but if you are asking me that because secretly what you really want to know is if his extra chromosome and the hurdles he will have to overcome will in some way inhibit you from loving him as much as Luke........then without hesitation my answer to you is, No, no way, you absolutely love him every ounce as much as Luke, so much so that at times it takes your breathe away. Your little Reid, the baby you have in your arms who is just hours old is actually going to teach you so much more about love and depth and beauty than you can even imagine at this point, but trust me.... he is an amazing teacher, and ohhhhh soooo cute!

The Me Then: Will he be invited to birthday parties?
The Me Now: Yes. The truth is he is actually invited to more parties in his first three years of life than even Luke was. He is also really popular around Luke's friends....when you are out on the playground after school picking Luke up, Reid tootles along and gets hellos, high fives, "knuckles", and hugs from so many of the kids. He gets a lot of positive attention and this little ham of yours eats it up.
The Me Then: I will really be okay with this?
The Me Now: Yes, so much more than okay.....go snuggle your new love and take a deep breath. The road you are embarking on some might call the road less traveled, but the ones who have gone before you will tell you, as I am confirming now, that it is beautiful..... enjoy the view!