Friday, December 23, 2011

Court Date

We received our court date for Monday at 11am! Merry Christmas.










Just Made My Day

So I was reactivating my blog and comments section and I stumbled on a comment that I did not know was there. Shortly after we arrived, I emailed one of our local radio shows, 94.5 The Buzz, and told them I was so glad I had the I<3Radio app on my iPhone because I could still to my beloved morning show, Rod Ryan Show, and still have some semblance of being home. I put in my email that we were in Ukraine adopting.

My mom had told me some of her friends had heard Rod read my email, which got me excited. Then I found this comment. It just goes to show that you never know who's life you might impact or touch just in passing.

It made my day. I would like to share it with you...

Hi Julie! I beleive I was your waitress at Pappadeaux at the beginning of your amazing journey to bring your children home. I was listening to the Rod Ryan show this morning and heard Rod talking about a couple going to the Ukraine to adopt to children with Down Syndrome. Somehow I knew that the couple he was referring to was the same couple that came in to Pappadeaux. I checked out the link you gave to Rod, and sure enough I saw your picture and knew I was correct. When you and your husband came in yall told me your were going to adopt two children and I was in awe then! After hearing Rod tell your story, I was crying. I have several family memeber with special needs due to a genetic disorder. I've always had so much respect and been so awed by their closest family memebers. The dedication, strength, and patience they carry is so awe-inspiring to me. I knew you and your husband were remarkable people when yall were in the restaurant, but I just didn't know HOW remarkable yall truly are! Yall are blessed beyond belief, and I wish the blessing to continue to shower upon you and your family relentlessly! I'm honored to have met two people so selfless and giving. Have a wonderful trip back home! Good luck! :)


Just wanted to share! I hope she comes back and sees this blog post. I cant for the life of me remember her name...might have had something to do with my nerves that day and the beverage I consumed. This was at the Pappadeaux's in the airport before our 1st flight.


I just want to tell her Thank You. This journey we are on has gotten very wild and at times a little hairy since we have been here.


Note on Blogging

Ive reopened our family blog. I will not be reopening or adding anyone to the adoption blog, as I will not be using it anymore. All updates and further blogging will happen on our family blog page, where it should.

I also will have limited posts while in country completing the adoption process. I will update daily of FB with pics if I have any.

Thanks for your understanding.

Saturday, December 10, 2011

An update from Julie


Hello, everyone. Guest blogger, Christie here.

Julie and Cam arrived safely in Ukraine, they have had their referral appointment for both boys and have been in "region" where the boys are now for a couple of days. They have met both boys and were smitten.

This is a Facebook update from Julie, just sent 45 minutes ago. To say this is not want she wanted to share is a huge understatement. Please, respect her wishes for privacy right now as they work through this process and focus on bringing Peter home.

"Hi all. Just wanted to update. Due to circumstances beyond our control, Ty is not available for adoption. This was not known until after we visited him and filed the petition. We are still thankfully adopting Peter and have been visiting him twice a day. He has the best smile and infectious laugh, which I have both of on photos and video. I'll try to upload but our Internet has been very spotty. 
We are very saddened about Ty and thankful we had that one short visit with him. At some point down the road we may share details of the story, but right now we are requesting privacy on that matter. Thank you for all your TP that Andrea requested although she could not disclose it was us." 

Now, here is 12 seconds of pure joy. Enjoy, with love from Julie, Cam & Peter



*I've shut off commenting ability, you may leave your love and support on Julie's FB page if you know here there* 

Friday, November 25, 2011

Travel Date!

Wow!


What a Thanksgiving we had! We went from Hurry up and Wait to OMG, get your bags packed, you are leaving in 9 days!

That's right. We are leaving to U know where to get our boys. Our appointment date is December 6th. We will be leaving on December 3rd or 4th...I am waiting on flight info right now. We have SO much to do in a very short time, but we will get it done. To help with costs of leaving and being gone I have been working overtime and had signed up to work from tonight until Tuesday. I may have to make Monday my last night because Kai has therapy on Tuesday and my mom has to go so that she knows where it is.

We also thought we would have a couple more weeks to fundraise for the remaining money needed for both boys. We have some wonderful wonderful women doing great things for us! Christie Taylor is doing a Scentsy fundraiser for us...you can still go and buy through Nov 30th, great for some Christmas gifts, just click this link: https://ctaylor5477.scentsy.us/Buy?partyId=60752532 Thanks Christie!

Another wonderful momma will be donating to our fund in December, and for that I am truly greatful!

And once again, Patti is doing another fabulous giveaway. Patti is the momma who raised the original $15,000 for Peter is a mere 10 days, right before we committed to him. Patti has graciously added sweet Ty to her current giveaway to help us raise the last $3000-$4000 we need to have all costs covered. To check out her giveaway, click here: http://babynumber10.blogspot.com/

I am very thankful for all of these women and each and every one of you who have given to our cause! And soon you will witness the results of your actions when we bring these two sweet boys home.

The next week is going to be a whirlwind, so I dont know how much I will be on here or Facebook, but I will try as best as I can to update everyone. I cant wait to post the first pictures of our boys! I cant wait to meet them and hug them and see their sweet faces.

Thank you everyone!

Tuesday, September 13, 2011

Rising to the Occasion

On August 25th, I drove my little boy to the pre-school we have waited 3 years to get into.

On the way I had a mild to moderate anxiety attack. Traffic was terrible. If you live in Houston, then you know what I am talking about. And it just so happened that American Idol was having auditions that day as well. I mean seriously, on our first day of school?

The more I sat gridlocked on the freeway, the more panicked I became. I was going to be 'that mom' whose kid was late on the first day of school. We would have to walk in and have everyone stop and stare because we would be disrupting the classroom, I would get dirty looks from his teacher and the helpers...great.

So I frantically began communicating (because I am not going to say I was texting in my car and get dirty comments from you all, besides, we were not moving anyway, but still, I know...)with my husband, who was offshore, that I couldnt do this. I couldnt make this maddening drive back and forth, 30 miles each way, twice a day. That is a 120 miles a day on my car for those of you who do not like math. And about 3 hours in my car a day. I dont like my car that much.

I told him this didnt feel right.
I didnt care that it took 3 years to get in, I dont think he belongs there.
I am turning the car around and taking him back to his old school.
He has friends there.
LaLa is there, they should be together.
Gas was too much.
I dont want to get up at 530 every morning.
And on and on I went.
Until I got there.

The school was beautiful. It was just built and today was the first day the students would be using it. The new, bigger building was the reason that Kai was attending in the first place. It had allowed them to add extra classes to first three rooms. And our room was a last minute add when one of the teachers decided she would like to come back after being out for 2 years raising her daughter. I could kiss Ms. Tracie's feet every day for making that decision.

I exited the freeway and quickly the panic began again. How the hell do I get in there?? There was a huge, chain link fence surrounding the school all along the feeder road entrance. So slowly I drove further and there was a little side street, I turned because I didnt know what else to do. And if you know me, you know I am infamous for getting lost, TomTom and iPhone GPS and all...I get lost. Then I saw the sign that had The Rise School on it with the address and an arrow for parking. Turns out you have to make 3 right turns(thats almost a square for you geometrically challanged people, but I suppose it could be a triangle if the angles aligned right), anywho, 3 right turns and then you are finally in the parking lot of the school. Seemed I wasnt the only one that was late. There were mommies I knew, just arriving with their little ones. Shew. First wave of panic over. Well of course I drove down through the drive trying to find a close spot, which I should have known wasnt going to happen. Then all of a sudden, after taking that 4th right turn, I was on a little street that was taking me back to the feeder road I had started on. Of course it was. So I made the 3 right turns again to get back into the parking lot, now noticing the specialized high school for 'future' medical minded students and then, oddly, a psychiatric hospital. Ah, that explains the very tall chain link fence...back to parking lot I come. I suck it up and park in BFE. And if anyone can volunteer what goes through the mind of who designs these parking spots that are obviously made for a Smart Cars and not Toddler Toting SUVs and then stuffs them in a parking lot for a preschool, next to a YMCA day care, please do. Not to mention the signs in front of the spots that say 20 Minute Parking. Yeah, Ok, whatever.

I get Kai out of the car and carry him until we get to the covered sidewalk. I set him down so he can do the Big Boy Walk into school only holding mommy's hand. We get closer to the entrance and it is like the Grammy's or something. There are people out there with nice camera's taking pictures of you and your little one before you head into the school. We stop for a pose(thank goodness I looked skinny that day!)and then head in. I literally see 3 or 4 mommies I know before the door shuts behind me.





The rest of my anxiety slips away. I find out where his room is, which just happens to be very close to front doors. So I take him in. His classroom is beautiful. Everything is shiny and new. All the toys are new. All the kids have a 3 tiered cubby with their name on it. Thankfully Jessica was there the day before and informed that Kai was not Kia and that he was a boy, so his name was changed on his cubby and the pink decorative paper was replaced with a boy color. I met his teacher. She was great. Then I kind of stepped aside as other parents were bringing their little ones in. Turns out our room was mostly 'new' students that had just gotten in. There were a couple of seasoned veterans in there, one of them being my friend Jessica's little girl, so I was happy to have a mom Ive known since before Kai was born in his room. I actually met her when I was pregnant with Kai and she told me about Rise. I stood back and watched. They had Kai sit at a table with other kids and they brought out the snack cart. Thankfully they had graham crackers, one of the two crunchy things he will actually eat. Some of the kids were crying, some of the mommies were crying. I stood there smiling. I snapped a few shots with my phone and a few with my camera and the teacher was also taking pictures.

He was comfortable. I was happy. This was the right choice.

Sorry, I know its blurry, but I am at work, so I am limited to photos






Wednesday, July 6, 2011

And the Winner is...

Please click on our Adoption blog in the tabs above or here to find out the winner of our Laptop GiveAway!

Thanks everyone for donating!!

Sunday, July 3, 2011

Freedom Weekend Giveaway! Let's get Peter his Independence!

First, thank you everyone who donated and who reposted or blogged and those of you that did both! We need just $783.00 more to fill Peter's grant to $20,000!

Edited to add we have reached our goal of $20,000 today! We will continue to raise money and the left over money will go to another RR child's grant.


Now lets celebrate Independence Day by bringing our son home! This will be his last 4th of July spent surrounded by 4 walls and never a glimpse of any celebrations.

For the final 3 days of our Dell laptop Giveaway, Im going to up the ante and make the donations count a little more for you guys.

A $10 donation = 1 entry

$15 donation = 2 entries

$25 donation = 5 entries

$40 donation = 8 entries

$50 donation = 12 entries

And for every social media or blog you repost this blog entry to, you get an additional entry

Here is what you do:

Click on the Donate button in the column to the right(under Peter's Clock)near the top OR click on the picture of Peter right below that. These will allow you to donate through PayPal and will be Tax Deductible.

After you donate, you come back to THIS post and down in the Comments section, you will leave me your name and how many entries you have(including freebie entries from reposting). I need a first and last name or an email address so that I can find you in the event your name is drawn.

The fundraiser will run until July 5th, 2011. Random.org will choose the recipient of the laptop and it will be posted here on July 6th and then the laptop will be sent to the lucky person. I have already purchased the laptop and it is in my possession in original packaging(I felt safer with it on my actual person)

Here is a link to the post with the specs of the Dell laptop: http://might2save.blogspot.com/2011/06/forever-family-fundraiser.html


What is it for?

To raise the rest of the money needed to bring Peter home. Peter is 4 years old. He has lived his entire life in an orphanage in Eastern Europe. He was not wanted at birth because he has Down syndrome. Peter also has a heart defect that is at a critical stage and needs to be repaired ASAP. He has had some procedures done to hold him over until we get him home and to Texas Children's Hospital where they will be able to repair his heart.

Your $10, an amount you probably spend at the drive thru or by throwing an extra item or two in your grocery cart that you just had to have, like ice cream, may not seem like it will make a big impact here, but I personally witnessed the first $15,000 of Peter's grant raised on nothing more than asking for $10 donations, and it was done in 10 days. We dont need much more for Peter's grant to be full, so we will take what we can get. We know times are tough, believe me, we know. So if you really just cant part with $10(I have been there too), then please take a moment and repost this on FB or Twitter or Blog about it. You just never know who it might end up in front of.

Here is our link to Our Family Sponsorship page on Reece's Rainbow where you can read our story:
http://reecesrainbow.org/sponsorkehm

Wednesday, June 22, 2011

Why are you adopting?

Why are you adopting?

We have gotten that question several times in the last 3 or 4 months. We have heard it from our social worker conducting our home study, we have heard it from friends, coworkers, strangers...why are you adopting when it is obvious you can have your own biological children?

Well, I didnt know it was a rule that you couldnt adopt because you can procreate your own children. I could grow my fruits and veggies too.

I guess it was a shock for a lot of people that are close to us, friends and family and such, because we had never talked with them about adoption. And I guess to those family and friends it seemed much like we had lost our mind and we were jumping into the deep end of the pool that had been cemented over last winter.

Our decision to adopt came about 2 to 2.5 years ago. So, if you do the math, you will see that was shortly after the birth of our first born, Kai. We had Kai and were christened into the world of Down syndrome. It was a scary place at first, full of unknowns and what ifs and it felt like a journey we were on all on our own. I mean its not like our Big Splash into Parenthood was all bells and whistles, balloons and confetti...dont get me wrong, it was a wonderful day, a day we celebrated, but it was full of trepidation. Will he breath OK? Will he eat? Will he go to level 2 or level 3? How bad is his heart? How long will he have to stay in the hospital? I was terrified to have him, only because I knew he was safe and sound inside of me and I had no idea what the future held for my son when he entered this world.

Well, didnt he surprise us all? Came out screaming with his strawberry blonde hair glowing against his angry red skin...he was absolutely beautiful. Absolutely healthy. Absolutely everything we could have wished for. Things went fairly typical or normal for what you would expect with a newborn. We did have that slight hiccup of his 9 hour open heart surgery at 10 weeks old, but all in all, a total of 12 days pre and post op, wasnt too shabby for our little man.

Then the milestones starting coming. Slow but sure. And we were so so so proud of each and every one of them. Our journey into the world of Down syndrome wasnt so bad and scary after all, it was actually pretty awesome. Along the way, I had begun to hear of a website called Reece's Rainbow. Reece's Rainbow is a place where you go and you can find pages and pages of babies and toddlers and even bigger kids that are for adoption, from over in Eastern Europe and China. Reece's Rainbow had started with only children that had Down syndrome but has since spread its rainbow to encompass all sorts of children: children with Fetal Alcohol Syndrome, HIV+ children, CP, and every other conceivable anomaly you might think of.

So, I heard of this site. I ventured to it. Only once. What I saw broke my heart. So many babies. So many children. I talked to Cam later that night about all I had seen. We talked for a long while. We decided that one day we would adopt a child from Reece's Rainbow, one who had Down syndrome. But until we were ready to do so, I would not be going back to website.

Of course we planned and figured it would be much much further down the road than NOW...but like much of life, you dont always get what you plan for. The night I received and opened the email from my nettie BFF, Christie, was the night that was meant for us to begin the adoption process. Just like we didnt choose for Kai to have Down syndrome or Lilah to have a Diva disposition, we didnt choose Peter. Peter chose us. He has been waiting for us for 4 long years. Waiting patiently and without complaint. As soon as I laid eyes on his beautiful face, I knew he was our son.

So now you know they why and the when, but maybe you are questioning the How? As in HOW we are going about this adoption process. Maybe you have seen the fundraisers and the posts asking for donations. And you are asking yourselves, if you cannot afford to adopt this boy, then why do you expect strangers to foot the bill? Look, before I got enmeshed into the world of adoption, specifically International Adoptions, I would see the endless posts and not even really know what people were posting about and why they wanted money. Let me break it down. Every child on Reece's Rainbow has an Adoption Grant. Their grant starts at ZERO. People, many people, I have come to learn, fundraise for these children. And these are not people that are even looking to adopt these children, they are just trying to help out families. Most of the children they are fundraising for do not even have families yet. But by filling a child's grant, it makes the reality of their adoption more feasible for a family. They tell you that you dont have to be rich to adopt, and you dont...after you get passed the initial $24,000 out of pocket.

You will be pretty hard pressed to find many, if any, families in these economic times that have 24K sitting around just waiting for an adoption. And families or people that do have that kind of money, I dont think are lining the cyber hallways of Reece's to adopt 'disabled' children from across the world. Maybe that is me making a stereotype...gasp...that I should stoop to do that, but there it is.

Yes, we could save up the funds and then pursue our adoption. We very well could do that. But, between the ages of 4-5, these children in these faraway lands, are sent to adult mental institutions...so you see, we dont really have that kind of time. I guess had we approached this adoption like we intended, sometime down the road, maybe with the money in hand, and then scoured Reece's Rainbow for our child then we wouldnt have to fundraise. We also wouldnt have Peter. Peter would be long gone by then, and not to some other family's home. Peter would have been one of the lost. Our time to adopt is now. We are fortunate that we had one of those fabulous women/mommies fundraise for Peter just as we found him. That wonderful woman raised $15,347 for Peter in 10 days. She simply has the Midas touch and I would be foolish to think I could raise money like her, but Im doing my best.

And in our fundraising effort, we are also achieving something else...something that is one of my all time favorite things to do. We are spreading awareness for Down syndrome. Maybe not in my typical fashion of helping new mommies and daddies, or the Buddy Walk or the countless other things we do to raise awareness...but we are spreading a special type of awareness. Awareness of something I didnt even know existed. I had no idea that hundreds upon hundreds of these children were tossed aside every single year in these faraway lands because their society deems them unacceptable. Just tossed into these overrun orphanages, or baby houses, some better than others, but all kept very secretive, so you really have no idea what the conditions are where your child is, and may never know.

And from that I get the questions, why are you adopting from over there? Why arent you adopting from here? Well folks, Id love to, but the truth of the matter is there is a 3 year waiting list here in the US to adopt a child with DS. And in my eyes, a child is a child, whether they were born here or halfway across the world. An unwanted child should have no eye of prejudice turned towards him from where he came, he certainly did not choose his parents or to be born in a country where he will be locked away for the rest of his life like he was some criminal. Who cares where my son comes from?

And what they do over there with those children is really terrible. And as Americans we will judge. We would never do that. Nope, not us. For the most part when a family is blessed with one of these surprise bundles of joy, they put on their big girl panties and trudge forward, and then they slowly realize the joy and pure luck of having a child with Down syndrome.

Nope. We dont toss them away here. No, instead we have tests. Lots and lots of tests. Not everyone has them, mind you, hence the surprise bundles of joy mentioned above. I had them. I cant even tell you why I had them. Just because I assumed thats what you did when you were pregnant. I had those tests. Those tests told me that my baby had a 1:5 chance of having Down syndrome and 1:68 chance of having Trisomy 18. But those are just odds and chances. So, we took it one step further, we needed to know. So 9 days later we knew. We knew we were having a boy. And we knew that boy would have Down syndrome. So our plans for our child took a 180 and right then and there started the specialist appointments and research on the internet and finding support groups. How many babies do you know that have a cardiologist before they are born??

But, we are a minority. In fact, I have a number for what we are. We are 1 in 10. I know, lots of numbers. Think of how we felt. 1 in this and 1 in that. I was so sick of numbers by the time he got here. But I think that 1 in 10 is very important. Sounds like a low number, doesnt it? It is a sadly low number. 10%.

Out of every 10 prenatal diagnoses, meaning the parents knew their unborn child had Down syndrome, 9 of them terminate their pregnancies and ONE will keep that baby. 90% terminate. 10% continue with the knowledge that their child will have Down syndrome. So no, we do not throw our children away in orphanages here in the US.

What does that make me? A martyr? No. It makes me a person who goes and does differently what most of society would do...and if you  have known me for any length of time, you know thats just what I do. I just see and do things differently, or a better way to explain it, I do things as I see fit, as I deem right and often times that isnt what the rest of the world is doing.

So, before we get all high and mighty and disgusted with what people are doing half a world away, lets not forget what is happening in our own backyards. I advocate for ALL children with Down syndrome, no matter how they got here or where they are. They all deserve a loving home. They all deserve a light upon them, whether they are in the here and now, or merely what couldve been. And just think of that 3 year waiting list here in America of people waiting to adopt a child with Down syndrome and those 90% that are terminated. Seems kind of obvious doesnt it?

Im not here to tout pro choice or pro life, Im just stating the facts as they are. People dont like to hear the facts, especially if they arent pretty, and thats ok. In my lifetime, if I only change one person's mind, save one child, then I have done my job. I have accomplished what I have set out to do. It all has a snowballing effect and it only takes one snowball.

Tuesday, June 21, 2011

2nd Week of Laptop Giveaway!

First, Thank You ALL who have donated to Peter's grant to help bring him home!


We have raised $944!!! In ONE WEEK!! Thank you!

The giveaway isnt over yet. It will continue until July 5th, so please keep raising awareness by donating and reposting this and dont forget to mention that $10 gets you a chance at a Dell laptop, and every $10 off of that gets you another chance.

Here is the link to the specifics:
http://might2save.blogspot.com/2011/06/day-2-of-our-laptop-giveaway.html

Thank you all for making this a success and helping get our son home!

Wednesday, June 15, 2011

Day 2 of Our Laptop Giveaway for Peter!

We are hosting a fantastic fundraiser to bring Peter home!! All the details are on our Adoption Blog. You can either click on the link at the top of the blog or this link:


http://might2save.blogspot.com/

Thank You!

Tuesday, June 14, 2011

Dell Laptop Giveaway for Peter!

We are hosting a fantastic fundraiser to bring Peter home!! All the details are on our Adoption Blog. You can either click on the link at the top of the blog or this link:

http://might2save.blogspot.com/2011/06/forever-family-fundraiser.html


Thank you!!

Just Pictures

Just goofing around with my new computer trying to get my pics onto it!







Sunday, June 12, 2011

The Ugly Truth

Today is a day I have many words for, but none of them could ever convey the magnitude of pain and anger I felt and am still feeling. My whole body was shaking. Tears were falling down my face as I furiously typed back a response to no one and everyone.

Something inside of me was shattered today. It was the Illusion that my son will fit in, the Illusion that he will be welcomed into a regular classroom, the Illusion that children will pick on him. Turns out its not the children I have to worry about. But when a child does pick on him, I now know where it was instilled in them that it is acceptable to treat him as someone who deserves less than them because he is different. It starts with their self-righteous parents.

Today I learned that a fellow parent feels her child should not have to be in a class with students who have IEPs. For those of you that dont have Special Needs children, a child with an IEP has some type of learning disability, it is their goals for the year. It was stated that its not right that their child, who is already of above average intelligence for the grade they will be entering, should have to be in a class with kids like that. Kids like Kai. Their son is there to learn and get and education and it isnt fair that he will be teaching my son instead of getting his own well deserved public education. This is about Inclusion...Ironically Inclusion seems to bring about feelings of Exclusion, which is more preferred. It was stated that instead of children like my son being put into her sons classroom, her son and all the other above average children should be put in an enrichment program. So they should get more, because they are smarter and have to deal with our S.L.O.W. kids. Perhaps she should get some of her own enrichment.

This above synopsis was from the fingertips of a friend. Someone who staunchly supports Kai and DS and proclaims that knowing him and me has changed their views on people with Down syndrome. Apparently I am doing something wrong, because that is NOT the view I was going for.

I responded to the statement, even though it wasnt written directly to me, it literally had Kai's name all over it. I will just C&P my response. It was written with passion, rage and hurt, a lot of hurt. It came from the shattered heart of a mother who really believed her son would really be accepted by his peers.

Us moms with kids who have Down syndrome are often accused of wearing Rose Colored Glasses...today mine fell off...

My Response:

So they make the 11 smart kids teach the class? Wow, that is kind of unfair. If he reads at mid first grade level then maybe the school should move him to mid first grade because it seems that even if the other 70 weren't below average, he would still fall at the high end of the bell curve since he is beyond the curriculum for that grade level. I was always at the top of my class and I don't recall ever having to teach another student. But I went to school in a time when 'those' kind of kids were secluded from our classes so I guess I don't know the burden of having to have people who were slow or with disabilities sitting next to me, taking away from my education, especially since my education was far more important because I had potential to go to college and have a career and they will probably never be contributing members of society. Maybe you could ask the school to put those 70 students on the Short Bus and send them to a vocational school so they can learn to push grocery carts or bag groceries. And by imposing these different standards on them at an early age they can learn they are inferior and different from others, and they can learn to mask their shame early on, thicken their skin for the real world.



I'm terribly sorry that children like my son encroach on your child's free education because he finally gets a shot at having the same free education. Do the skinny kids get less food at lunch because the obese ones get larger servings?


I'm glad I can find out these kind of things from my 'friends' before we get into the real world. Because if this is how people feel who my son has supposedly made an impact on, then I know in advance to expect nothing from the sea of strangers who don't know him or care to know him. It's also good to know that he has changed how you think/feel about someone like him and opened your eyes to be more accepting as long as it's done from afar and not something you actually have to stand behind because god forbid your child has to sit next to mine and learn so easily and mine will come home and practice that assignment all night and the next and the next until he can finally understand it...


It's funny because since I've had Kai, it's always my 'friends' I catch these glimmers of what people really think. I always assumed it would be the cruelness of strangers I'd have to protect him from, but time and time again my friends and family are the ones. I guess strangers actually have the decency to keep their feelings to themselves. But I know if the people who 'care' about my son say those things, then the others feel the same way.


So thank you. You have saved me from an illusion I would have walked into his school with in November. Inclusion in school is a law, and at the end of the day, that's all it really is...there is no meaning behind it. It's just tolerated because it keeps us parents quiet.






I can also tell you I am shaking as I type all this. I cried through some of it. To you he is nothing more than a burden taking away from your normal child, but he is my child. He is a little boy who laughs and cries. It's too bad you will never see him as that. Maybe I shouldn't have put this all out here, but I'm not going to stand by and be quiet for the sake of not rocking the boat.


I'm done talking and sorely disappointed. I want to puke. I'm signing off for now. I've got to go teach my son how to eat fucking table food or they'll have your kid doing that too.


Today didnt feel Upside Down, it felt Inside Out...with my tattered Mommy flag barely clinging to its pole of raw emotions, left for all to see.

Today I cried. Today I was pissed. Today I saw the Ugly Truth. Today I became an Advocate.

Tomorrow. Tomorrow I will teach him.

Saturday, June 4, 2011

Changes are a comin'

Hi all

Just wanted to drop in and give a little ketchup!

We(and by we, envision me twisting Daddy's arm up and behind his back)have decided to put Kai in Mother's Day Out. Now I know this sounds silly since one of us is always home with the kids, and maybe even cruel to ship our child off to 'day care' when we are home and able to entertain him/them.
After much debate on whether we should try private Speech therapy or not, someone suggested to me that we put him in day care part time for socialization skills and it might just help with his Speech. I thought that was a fine idea and set out looking for the perfect place.
I looked high and low and juggled prices and times, etc and decided that Mother's Day Out would be the best.
A couple of reasons: A) Its Mon-Wed-Fri from 830-1130am, its only $152 a month(instead of a week like most daycares, whether they go full time or part time), and sick kids arent allowed. I like the last one the best. Now before you go and tell me that people still bring their sick kids, yadda yadda, Im aware of that, but because its Mother's Day Out and not utilized so much for parents that are working as it is for parent's that just need to go grocery shopping or, oh I dont know, take a shower uninterupted and maybe shave a leg or two...so the likelyhood of sneaking a sick kid in should be less.
I think it will be a good 15 hours and a well spent $150/month for our son. I think it will do good for him to play with other children and play with toys instead of tossing them all over the place. Its just good for him to be with his peers. I think and hope it will also have an effect on his speech as well. Its also a good segue into PreSchool that he will be starting in November.

That will also free up some one on one time for Lilah and I. According to the 'pediatrician' (one who was filling in for one of ours)Lilah is behind in her speech and when we go back in July for her 15 month check up, we will revisit that problem if it still exists. I think she needs to shove a sock in it. She babbles and screeches and likes to read books with mommy. Im sure as heck not going to worry if at 15 mos she doesnt say 'Mother Dear, Id like to have my chocolate milk now.' Pshaw. Now, had I brought her in and been fretting about delayed speech at 13 months of age, I would have been Tsk'd Tsk'd. Either way, Im not going to worry.

We have a few other exciting things going on in our lives right now too, but I have decided to wait until those things are full in motion before mentioning them aloud.

Hope everyone has a great day :)

Wednesday, May 18, 2011

Buddy Walk 2011

Im excited to announce that our Buddy Walk Team page is already up and going! This year we are going to campaign hard to have a big team walking. We will still raise money, but I want to focus on the importance of being part of a team and sticking by each others side for a cause.


I want to celebrate all of our family and friends that have been on this journey with us who stepped lovingly into the world of Down syndrome and to proudly join all the new, wonderful friends we have made since we became part the Down syndrome family.


Our team name this year is See Kai Run. There is a children's shoe company named See Kai Run and they said that they would be honored for us to walk in with their name in support for Down syndrome. They will be sending us some free Tshirts for Kai and Lilah to wear during the walk(under the Buddy Walk shirts, of course!) and have asked for pictures. I was very pleased to get the response to my request within one day and for the nature of the response.


I will be posting the link to our page at the top of the blog with my other links and you can also click here to go and see our page. We've already got some of our most loyal family and friends signed up and/or donating. So, take the pledge! Sign up and we will see you there on Dec 3, 2011 at Minute Maid Park!


Sunday, May 15, 2011

Finding the key that fits

After much worrying on my part that I would never be able to communicate with my son, never know what he is thinking or what he wants, I think we are approaching a language breakthrough. Now, a breakthrough in our world is much different than the idea you conjure up in your head when you hear the word. There is no marrying of Schr√∂dinger's cat and Einstein's quantum mechanics here. Although my idea of communication versus yours may be very similar to said cat...its both alive and dead until the moment you open the box.


Or in our case, his communication skills are all in there but from any onlooker in a crowd, he appears to have no communication skills at all. And up until last week, we were part of those onlookers in the crowd. I knew that my son could understand me and I could tell his understanding was growing day by day. He responds almost all the time to his name. When I ask him to Come here, he almost always does(as much as any 2 year old will, I suppose) and he understands several other requests. The simple fact that he is understanding and responding appropriately more and more every week, shows that he is learning.


Before I had a child with Down syndrome I never understood the level of complexity that exists for every task that we learn. Because of my son I get to see the delicate flow sheet that is an integral part of every thing we learn, especially the things that seem to evolve naturally as our child develops from an infant into toddler hood. I didnt appreciate this step by step process until we had Lady LaLa. Before she was here, all I focused on was achieving the end result to say Kai was successful or 'on track.' Which, truly, is how any first time parent thinks, or even parents of children that reach all their milestones accordingly. You may see a few of the 'big' steps in between the major milestones, like rocking back and forth on the knees before crawling or cruising furniture before walking...but to the general population, these are typical signs we impatiently wait for and once they happen we run telling all of our family and friends of the impending milestone. This natural evolution is expected of our little ones and we never stop to think of all the mechanics, development, skill, want, etc that goes into each milestone being achieved. We are natural born over achievers, and something is flawed in our genetic makeup when we hit the age of 16 and that seems to turn off :) but thats for another day!


So, like I said, we also gauged Kai's next milestone by the major markers that precede them, which is fine. It meant he would do it, but just because he was cruising furniture didnt mean he would be walking in  X amount of months like typical children. Of course we didnt know that because he is our first. I just assumed that the steps to walking were A->B->C and since he was at B, he would be walking very soon. Well, thats not so. The beauty of having a child with Down syndrome is you get to witness all the in between, minutia that build upon one another to achieve the final outcome. Once you realize that, the anticipation of seeing what the mini-step is takes away from the sometimes grief or sadness that can wash over you as see your child slipping further behind his peers. This isnt something I learned overnight. Kai is 2.5 years old, and I just learned this last week.


I know language skills are broken into 2 major categories: what they understand and what they convey, and I only learned this within the last year when we had our first appointment with the Down Syndrome clinic and he was graded on language in those two aspects. In the last few months he has been understanding a lot of our simple sentences and requests, which is very exciting to us. I assumed the next step would be pointing to what he wanted and maybe some one word utterances. His babbling has returned after a long disappearance since we have been home, which is due to him honing his walking skills and developing his climbing(which he does very very well). Now that those are mastered, Ive noticed a resurgence in his babbling. Kai has, for the most part, been pretty vocal, even if to just repeat one syllable sounds over and over, but the sounds were there. Somewhere along the way, those were not built on when the timing was right...probably due to our life circumstances at the time, and we lost those initial golden chances. Luckily they come around more than once. We have been working on signing with Kai since he was about 6 months old as well. He picked up a couple, but lost those as well. Again, due to outside issues, in my opinion. But we are back on track. We still work on signing, but he isnt a big fan of 'hand over hand' to teach and show him. He is very stubborn and independent. I was beginning to think that he just wasnt going to be able to learn to communicate. That he just didnt have the capability or we were just going to be one the families who had a non-verbal little boy. The thought of never hearing my son call me Mommy just breaks my heart.
So I decided that if he wasnt going to be able to tell us what he wanted through verbal speech or even signing at this point, I needed to find some way for him to at least be able to tell me his basic needs. Even treading into this territory was so sad for me. I felt like I was giving up on him. I felt like maybe there was some other diagnosis we were missing. Or that I had simply failed him. It didnt really matter what I felt, it was my job to somehow find the tools that he could work with to tell us what he needed. There is nothing that breaks and bewilders your heart more than a 2.5 year old that cannot simply point to or tell you what they want or need. Its like the guessing game you play with your newborn when you bring them home, only this one follows you around the house screaming.
I decided to try flashcards. I first bought some from Signing Times, because I intended to still attempt to teach sign and to teach him to speak. I had not given up on him, I just needed another option or solution. I got the flashcards. They were cute. But how am I supposed to teach him what a banana is or an apple is or a drink, cookie, etc based on a drawing on a card? To him that makes no sense at all. He cant equate a cartoon cookie with the Nilla Wafer I put in his hand, or the bottled water on their card with his sippy cup of water. So I decided to make my own cards. I gathered up his favorite toys, some essential items like high chair and bathtub, and threw in some Nilla Wafers, Graham crackers and his sippy cup and took actual photographs of them. I would have used more foods, but table foods is our other problem area that Im trying to solve. Then I printed them on my little photo printer and laminated them.


Over the course of about 3 weeks, I brought the cards to the table with the actual items. I started with just snack time things so if he got upset and didnt want to finish we wouldnt be missing a meal. First we just place the cards on the table with clear baggies of the cookies/crackers on top of the picture. This was my first jab at association with him. I wanted him to learn that the picture he was looking at was the same thing in the baggie. And thats all I did. Just sat them in front of him while he ate the snacks. Then as I pulled them out of the baggie, I would hold the cookie next to the picture. You could see him scan the two and actually look at them both. Its almost as if you could see the wheels turning. The next few times I laid the picture on the table with the bag on top of it and would pick up both bags and let him pick which snack he wanted. He would look between the two several times and finally reach out and touch one, so I would give him one. Then we transitioned to after he picked one and I took it from the bag, I would put the individual item next to the picture so he could see while naming and signing it.
By now you get the picture...it is literally a step by step process. It sounds like it is very tedious and would take forever, but it hasnt. Within a couple of weeks you could hold up just the picture and he would touch one and we gave him that snack. The next steps came all on their own with no prompting from us, which are the most exciting moments!
Last week during Speech therapy we used 3 of his flashcards that were some of his favorite toys. I picked 2 that were absolute favorites and one he liked a lot and gave them to our SLP. The actual toys were behind her and she laid the cards out on the floor in front of him. I had never shown him the cards prior to this, but I think he now understands the association of choosing from them and getting something he wants, even though they were cards he has never seen. He intently studied the three cards and picked up one and handed it to her. It was his ABC drum, one of his favorites. 'J' handed him the actual drum and let him actively play with it for a few minutes. We took it all away and laid the cards out again, different order, same cards. He looked at them all carefully and picked up one and handed it to her...the drum :) This time she was surprised and happy because he was choosing the same item and when she gave it to him he played with it appropriately. So, 3rd time...laid them out...again, the drum...this time I truly believe she was astonished. Mostly because we had only worked on the food cards with him and he had never seen these. J was very excited about his ability to realize that this was the same concept. Sometimes our kids with DS have spatial and conceptual difficulties, but usually do really well with concrete. So, as far as I am concerned, it makes perfect sense. If you give him a picture of an actual item that he is familiar with in his own home, with a little work he will be able to make the correlation and know that it is the same item in the house.


So that was a proud moment. As any DS mommy knows, our 'milestones' dont come one at a time like most typical children, but in clusters. I think it is because we celebrate every step as a milestone because if our child has to learn that and we work with them to get through that flow sheet, you bet we are going to make a big deal about it! Luckily our trend seems to be to teach him the first few steps and he kind of builds on it from there. I know that my son is smart and intelligent. I know that his mind is complex and not simple like others think. If you ever sat with him for a day you would see it too. He is very interested in the way things work and mechanics, whether its stacking things, spinning things(like hula hoops, bowls, etc), tossing a ball back and forth...he likes to watch things go and to be the one to make it happen, and he is good at it. Anyway, I digress...we continue our daily flashcards at snack time, sometimes alternating between working on that and working on trying new foods(where the mere act of him picking up a foreign food and licking it, putting it on his tray to be done with, is a milestone...oh yes, trust me, that IS a feat to not have it hurled to the floor followed by a tantrum that ceases the rest of the meal).
Well, last Wednesday I was at my desk that is right next to their playroom and worked on some stuff. A pack of their Spongebob graham crackers were sitting on the desk. Out of the corner of my eye I saw Kai walk up to the desk and pluck the bag right off...he has never done that before! But I didnt look at him, just kept doing my work on the laptop. He walks around the side of my desk, comes up to my chair and hands me the bag of crackers.


I. Nearly. Fell. Out. Of. My. Chair.


Never has Kai handed me anything, E.V.E.R. Never has he asked for something so plainly and clearly...he wanted a cracker! And it was done with no grunting or upset crying.
My son had just ASKED me for something. Kai had just told his mommy what he wanted, for the first time ever. That moment was as if he uttered his first word ever...and essentially he did. When you wait over 2 years to communicate with your child, this is as beautiful as the spoken word. I was on Cloud 9.


Thursday snack time came. I popped him into his booster, pushed him up to the table and laid out his cards for him. Usually its just the crackers. Today I had the two crackers and his sippy cup. I went to the kitchen for Lilah's snack and came back to sit at the table between them. As I sit down I notice that Kai has one, (and only one)of the flashcards on his tray table. Its the sippy cup. Was it a fluke? I dont know. I wasnt present for the selection, but none of the other cards were tossed on the floor, so maybe it was intentional? On any note, I gave him his cup...and he promptly sucked down half the glass of water immediately. I laid out the 3 cards again and he picked out a cookie one that time. Gave him the cookie, he ate the cookie. Then I just laid out the cards with an actual item on top of the card. This time he pulled the sippy cup again, and again, drank a lot of his water.


To our family this is huge. Our little boy is learning to tell us what he wants and needs. Momma just needs to find out what the heck else she needs to take pictures of. During all of this time his babbling has increased immensely and he has learned to mimic a couple of things I have taught him. And he learns them within a couple of days and then even builds upon those by himself.


So now that my son can look at pictures and be able to choose what he wants, or see a bag of something and bring it to me because he wants it, what is next in our quest to hear his beautiful voice? I wish I knew, but when it happens I will know. Throughout all of this I have learned a lot too. I have learned that yes, you must crawl before you walk, but that there is about 80 steps in between that, and even though I dont know each one, I know how to facilitate and recognize them. He will still naturally learn a lot of the tiny steps on his own, but it is up to me to find the key that fits. I have to find out HOW he learns most effectively and facilitate that so that he can reach his full potential and beyond.


As daunting, frustrating and sometimes reaching the point of hopelessness that Down syndrome sometimes leaves you feeling, all it takes is piecing together the puzzle of your child's mind. This is actually true for all children, and our children should be included in these groups: All Children, Most Children...our children just sometimes have more pieces in their box.

Here are the actual photos that I have used for Kai:















Wednesday, April 6, 2011

Donation Box is Back!

Finally! There was a problem a couple of weeks ago on the RR website and the system was jammed with all the donations pouring in and we had to remove our donation boxes, but they are now fixed!




So now it is back on this blog and my other, so donating should be much easier!


Anyone want to try it out???

Saturday, April 2, 2011

Lilah Turns One

My baby girl has already turned One. How did that happen? It seems just like yesterday I had her at home a few days old, keeping me up all hours of the night and now she is a year old and driving me batty all hours of the day. In her defense, she has about 5 teeth coming in...molars and such.

So we had the small(or so I tried)party at the house...Im getting better at crowd control and kept my promise not to stress over the party and I vowed to be in some of the pictures. I was not in a single picture of Kai's first birthday and I was a crazy ball of stress the whole time. No wonder Lilah is wound so tight.

Elmo was our theme. Lilah loves Elmo. Lilah does NOT love Elmo being disemboweled and candy falling out of his rump with legs hanging askew...good thing the pinata was the pull string type and not the hit it with a bat type. Im sure that would have been more traumatic than it already was.


We had an Elmo cake. Lilah had a cake of her own. And boy did she HAVE it. She may grow up to be a massage therapist. The cake received a nice 10 minute massage, where most of it ended up in her red tutu, the floor and various other strategically placed orifices that only a one year old could find on such short notice. She finally took the plunge and began shoveling the cake into her mouth and actually eating some of it.

The day would not be complete without the opening of presents. Luckily there were several other toddlers there to assist with that. I tried reading the cards, but after we got the same one 3 times, it felt a little silly...not to mention, Lilah isnt a fan of sitting and reading. So the cards are sitting on the end table waiting for me to go through them. I remember lots and lots of clothes, and nice chunky puzzle(of which Lilah has gnawed most of the animals heads), and some make noise toys. All toys make noise these days. Trying to find some that do not is virtually impossible. I think its a conspiracy between the toy makers and the battery bunny to keep each other in business.


I do believe there was some eating of burgers and a bath for Lilah and removing balloons from toddlers mouths. I think Kai even got a roundhouse kick to the head at one point. All in all it was a great day. A day to be remembered.


I was a little sad that her 1st year has already come and gone. Then I told myself I would not lament over time gone, but enjoy every day with each of them and the stage they are in(this was of course before the non-stop crying and pant leg hanging began this last week). Which is why I am posting about a birthday party that happened a week ago...from work at 1230 in the morning.

Here are a few pics of the days events


Birthday Girl




Lilah's Tutu


Elmo

Balloon Herding


Balloons gone Wild

Sporting Lilah's Ride









































Tuesday, March 22, 2011

Blogging for AJ!

Many of you tell me I was your 'first' or I helped you in the beginning. Well, Christie was the one that helped me. I know you ALL know her...everyone does. She needs us. Her son needs us.


AJ is already in an institution. His mommy, my BFF, is working desperately to save him and get him out of there...every day is a day lost for AJ and all his skills and knowledge he has learned. It is likely that his days are now much more bleak than we ever thought the baby houses, or orphanages were.



Please help Christie and her family bring AJ home. Christie brought Peter to us and we are now trying to help bring AJ home to her. Christie and I were deeply connected by our two boys long ago on a little site called BBC and our friendship has flourished since then. It has mostly been Christie helping me through those tough days in the beginning when I didnt understand why working with Kai for 2 months straight on sitting yielded absolutely NO results and I declared my hatred for Down syndrome...Christie gently in only the way Christie can, told me...You know how much therapy I do with Joseph a week? NONE. I play with him. I play with all my kids. Wha?? I was stunned. You mean to tell me you dont spend 40 hours a week propping him over a drum to make him sit? LOL...So the ME in me let go a little, OK, a LOT, and I did what this crazy woman from Kokomo that I had never met told me to do.


I.Played.With.My.Son.


In a month he crawled. Another whatever he sat...out of order, of course! But it all went well from there. Weve had a few bumps, like food textures, but eh, we will get over them. Christie taught me how to let go of the anger and see my son as he was...a little boy. And once I did, my fire was lit. And will stay lit for my kids and for hers. The momma bear in me would come out just as strong for one of her boys as it does for my kiddos...so I will help her raise money to get her son home. If we didnt know each other I would not have found Peter and who knows how long it could have taken her to find Alexander in her plight to find someone for Peter?


Please please...if you are here to donate to my journey to bring Peter home, I ask you to give the money to AJ. AJ is in dire need to get home. Peter is too, but much of his grant is raised already, so please take your money to him. If you feel strongly about it, give most to AJ and the rest to Peter...give enough to at least qualify for the great giveaway of the iPad that Christie is sponsoring! Just click HERE and go see for yourself! Alexander needs to come home now!


This is the last picture of AJ before he was sent to the Adult Mental Institution...I hope that smile is still there.


Photobucket

Monday, March 21, 2011

World Down Syndrome Day 3-21

Why 3-21? Because there are 3 copies of the 21st chromosome! That's why.


Usually today I would blog of FB about all the great things DS means to me and how awesome Kai and how much he has changed our lives, but this year I decided to pose the questions to others. I asked on FB for people to tell me how knowing Kai and our family has changed them or if they have known before having Kai, how he has changed me, from their perspective. I liked it a lot, and loved the answers. So for my blog today, I am going to post all the replies. Call me lazy, but Im working my 3rd night in a row and cant see straight, so this is my feeble attempt.


Also, if you would like to leave a comment here with an answer, that is fine by me as well.


Happy Down Syndrome Day!!


Julie Everett Kehm




So, instead of me telling you what having Kai and DS means to me today, I'd like you to tell me how knowing Kai and our family has impacted you. Or if you knew me prior to Kai, how has it changed me.




Rea W Can I say how much knowing you and Kai has changed my life and the way I view people??



19 hours ago · LikeUnlikeJulie Everett Kehm ♥ Rea



I hope to see lots of comments when I get up tonight



19 hours ago · LikeUnlike · 1 person



Page M Oh wow...not that you were not a wonderful person before, but you have blossomed as mother and advocate for children with Down's Syndrome. You have an unmatched passion for your family and he is the glue! As you have siad so many times yo...u found your calling and your passion. I think Kai and your family have open the eyes of so many people that may have not known much if anything about DS, and shown them what wonderful world it is with them in it. I have never judged a book by its cover, you know that about me. Everyone has a battle they fight whether it is noticable or not. BUt I see Kai accomplishing things way beyound what is thought normal for him.....and you are the driving force for that. So maybe these other mothers can look at you and Kai and see....their are no limits to your child...only the one you impose! Love you guys with all my heart! You have made people see that Kai is just a little boy, like everyone else....his DS is no differnet than having red hair or green eyes. It is part of him and a wonderful part at that!





19 hours ago · Cathy H-T You were one of the first moms I "met" after having Lily who had a prenatal dx. I couldn't believe how strong you were, knowing you were carrying a child with Ds. If you ever had any doubts, you sure didn't let it show. I so admired that...still do! Have a beautiful World Ds Day and give Kai a hug from Lily and me!!



19 hours ago ·Cathie A-T You have always seemed to embrace Kai (and the dx)!



19 hours ago · Anna B-T Dear Julie, you guys have have helped me see that we are not alone in this world. That we are all more alike than different. Oh and that I am thinking of Kai as a future husband for Ellie :-P



19 hours ago · Teresa P Julie, you're a true inspiration to any mother. Your strength and will power to provide Kai with the best of th best and active approach to make the world better speaks volumes of your character. Even though we have never met in person... You have changed and created a new look on DS for me ♥



19 hours ago · Christie Taylor well since he has been born I've gotten the new best friend , a sister , a shoulder, someone willing to walk a mile with me, a momma bear whose always got my back. and the best part is I got all of those even though we have never met face to face I love you julie



19 hours ago · Jo M MY dh & I decided to NOT have any tests done while pregnant with Joseph. No matter what the out come we loved or baby for whom ever he is and wil grow to be. Joseph is normal and could not imagine feeling any differant about him.....although he is currently stuck under a glass table & cant figure out why he can't stand up. Lol!



18 hours ago · Elissa F-L Wonderful idea. Can I steal it? I don't "know" you guys, but I have loved following your adoption journey and seeing what a wonderful family you are.



18 hours ago · Kristin M I would have never met you if hadn't been for Kai having DS! And I am so glad we met : )



18 hours ago · Cameron Kehm Before Kai: Julie didnt like me very much, she worked all the time and we never spoke. After Kai: Julie didnt like me very much, she workes all the time but now we speak! She asks me stuff like ... Really??? WTF???? and OMG???? Because of Kai I now have a dialog with my wife, even if its one sided!!! LOL LOL Being Seroius: I watched the woman I love turn into a mother and wife I respect and become stronger than I think even she ever thought she could become. I love you and our chrildren with all my heart!



18 hours ago · LikeUnlike · 1 person



Stacey L What's so nice is watching how u have changed so much over the years. You went from not wanting any children at 18 to be a great mom that has taught me so much about endless love for her family. U are a great mother and a wonderful person. I never knew so much about ds until u taught me. Peter will be so lucky to have u for a mother!!



18 hours ago · Carey M-D Changed me? Saved me is more like it! I thank God for you every single day!



17 hours ago · LikeUnlike · 1 person



Danielle A Seeing how strong you and your Family are, Makes me want to be a better person/mother/wife! Forever greatful to know you and all your wisdom you bring to everyone. Your Family is absolutely Wonderful, and Kai has everyones Heart. ♥



17 hours ago · LikeUnlike · 1 person



Jennifer P Julie, I've never met anyone like you. How lucky Kai and Lilah are to have you as a parent. No matter WHAT the issue, you are a crusader for them AND any other children that might be affected. Yes, DS is the big leader when it comes to y...our passion and fight, but you will do this for anything. Defective toys don't stand a chance staying on the market. Websites run by ignorant minds will change their way of thinking. Mothers & fathers who feel scared or unprepared walk away from you with STRENGTH, PASSION and overwhelming love and acceptance. Knowing you, I have learned SO much about DS, and I have honestly never met or known anyone with DS. I never had the chance to know how I would have reacted or what I would have assumed about any person I would have met with DS. And now, I am fortunate enough to have met you and have learned to open my mind up more about not only DS but in many different types of life's situations and experiences. Sorry so long. ♥ xoxo

Tuesday, March 15, 2011

Out On a Limb

Originally posted on FB on December 12, 2010


I try to help new mommies when I can when they get a surprise at their baby's birth. Its a fine line and I usually dont cross too far until tests come back. For reasons I dont know, I went all out this weekend.



I encountered a possible 'new Mommy' at work this weekend, Friday night. I knew they were testing. From the doorway of her room in the NICU I can tell she is going to be one of ours. I smile on the inside only, as I look into the face of her momma who didnt know, who still doesnt know for sure...but has that lost look of despair, hope and undying love. Im the only one who sees this look and recognizes it for what it is as I walk in to remove a ventilator to make more room for Daddy's recliner. They are spending the night in her room.


You see, they were about to go home with their 1st born bundle of joy and she decided that she needed to let them in on a secret before they left. She had a little 'blue' spell eating. We are all familiar with that. I know I am and not just from working in the NICU, Kai had an AV Canal and Coarct. So instead of home, she was whisked away to our NICU. Reading through her chart I realize that from birth and every record of an 'exam' there is noted slightly upslanted eyes, protruding tongue, low set ears, yet no one Dr or nurse said anything. As soon as she is brought to the NICU the same features are noted and then they immediately discuss with the parents the possibility of Trisomy 21 and they would like to do genetics testing.


As I am leaving the room I look at Mommy and see that far away look, not really looking at anything or even really there and I ask her, 'Mommy, are you OK?' 'Yes' she says.A few minutes later she comes out of the room and asks for the restroom. She is pointed to it and we go about our work. About 10 minutes later Daddy sticks his head out of the room and the nurse asks, 'Do you need something Daddy?''I was just checking on my wife...'


I am standing across from the restroom door. We realize its been a while and we rush to the door and knock...'Mommy? Are you OK?''Yes, yes...Im just splashing water on my face.'I know then that she is in there crying. She doesnt want her husband to know. We always have to be so strong, us women. Makes me remember back. She opens the door. The nurses still dont know what's really going on. They ask, 'Are you dizzy?''Oh yes...yes...a little...' she lookes up at me and I see the red rimmed eyes.They rush a chair over to her and sit her down in it and are about to attempt vital signs and such that you would do for a woman that just had a baby 3 days ago. I dont know what overcame me, Ive never been this bold before...but I just stepped in between all of them and her and put my hand on her shoulder.


I just started rambling. I didnt even tell her what I was talking about or anything. I told her It WILL be OK. It's not like you think. It's not what I thought. Its so much more than you can ever imagine, its a love deeper than you will ever know. I said, 'I can say this because I know, my son is 2 years old and he has Down syndrome.' I can honestly tell you that 6 months from now you will wonder why you were sitting in this very chair crying...and you may think Im a nut-job standing here telling you this, but you will see...I promise you. By now my voice is actually quavering and my eyes filling up and so were hers, but I can see that I broke through that cloud, that fog and was really talking to her.She said it was so hard because they were about to go home and now she is scared because the baby wont breathe right when she is feeding and she is afraid she will hurt her somehow.(At some point I notice all the nurse had scattered away to leave me with her.)She said it doesnt matter, its harder not knowing what is causing this problem or that there may be no answer as to why she is having this issue. She said, she is already here, I already love her.


I kind of had to regain my professional composure at this point...because there is no 'diagnosis' yet. I told her not to get ahead of herself. They dont know anything yet and to just take it one day at a time. She will be the same baby today that she was the day she was born that she will be 10 days from now, whether she has 46 or 47 chromosomes. She.Is.The.Same. She wont be any different, but you will. But dont worry, there are hundrends, thousands of us out there and we stick together like you wouldnt believe. I told her she will never be alone in this if that is what is for their family. She asked some about Kai and I told her what a joy he is and that he did have OHS at 10 weeks old and has done beautifully. By now her tears were gone and she was smiling, her husband finally made his way curiously down to us. She said, 'Im fine, Im just talking with Julie here...'


I asked her if she was OK to get up and go back to her baby girl and she was. I told her that whatever the outcome, do all the same things you planned; breastfeed her: and it may take a while...lots of mommies with any baby can have difficulties; love her, show her off proudly, have the same hopes and dreams for her because ALL of that is still possible. I told her Good Luck and Congrats and off she went to her room.Last night was my last day there, so I asked another coworker that if her tests came back for Down syndrome to give her my name and she could find me here on FB, if she wanted.


I have always wanted to help people, thats why I chose the medical profession. But I always felt there was more, something deeper more passionate within me...I wanted to make a difference to someone. After I had Kai it became very apparent what my purpose and passion is, but its a delicate process. Its difficult to find that balance of showing others, including the parents, the joy and excitement of a baby with DS and not disregard the feelings of sorrow and loss that they are feeling as well. I am so thankful to have Kai in my life, he has opened my life up to a happiness I never knew existed.