Staring...

Lets be honest...we ALL do it...we all stare...whether we mean to or not. We stare at things or people who are...well, different. Different from what we are use to, different from what we know, different from what the "norm" is....different from us.
Well today I learned a little something about staring...
The kids and I were in a store today and I noticed a woman with Down syndrome walk by. And as it happens now when I notice some one with Ds or any other disability for that matter, time sort of freezes in that moment....everything slows down and zones out and I will glance around to see what other peoples reactions are... listen to what they say, how they look, how they respond. As this woman walked by I noticed another woman off to my right just staring at her, well staring is not the right word...she was gawking! She was watching the woman with Ds as though she were a freak or something...as if she were SO very different from a "normal" person she just wanted to see what was going to happen next, even though all this woman was doing was WALKING...just like everyone else in the store!!! It made me angry....really angry...and then it hurt. As I looked down at Russell who flashed me his most charming grin...it hurt. It hurts because I know full well that this is exactly how some people are going to look at Russell....MY Russell.
Times like this, where I get a flash into the future I often find myself fighting back tears....and I get scared. I cannot bare the thought of anyone gawking at Russell....and then I thought some more...
As angry as I was at the tactlessness, insensitivity and rudeness, of this woman who was staring...I wondered how often I have been guilty in the past of the very same hurtful behavior. The thing is that the woman with Down syndrome did not see this woman watching her, she was unaware...and this woman knew that. She stared because she knew that she wasn't being noticed by her....BUT...she didn't know I saw, that I noticed. She didn't know that she was hurting me...or perhaps hurting any family members of this woman who just happened to be a few steps behind. The thing is, is that you never know who is watching you, or who will be hurt by things you do....even if it is just staring at some one who looks different. You never know if some one in that persons family, some one who loves them beyond words, is watching you and your reactions, seeing your snickers and laughs, seeing you make fun of them, or simply just gawking at them like they are some unsightly creature.
People with disabilities have minds, they can think, they can feel, they can hurt, they can be embarrassed, they KNOW when they are being made fun of. They have feelings, just the same as all of us. They want to be treated with respect and as equals....NO ONE wants to be stared at!!! And even if you think that that person does not feel your stares...don't think for a second that some one else seeing you doesn't feel it for them. And another thing to keep in mind...is that these people who look or act different, these people with disabilities....Well they were once this...

Some ones beautiful innocent little baby.

Escape from the Bumbo!!

Ok Mom, I will do the bumbo seat for a little while....

I said...a LITTLE while...I'm done now...

Get me out of this thing!!

Hmmm...how should I do this???

Think...Think...Think...

Well, lets start with this tray...

I'll just get this pesky thing out of the way...

Uh oh....Busted!

But...I MUST get out!!

Oh, wait a minute...feet!!

Much easier without the tray!

Oh, yeah, I was in the middle of something wasn't I?? Escape...

Just about....

Ah well...Pretty sure this is as far as I am going to get....For now!

Getting past the guilt...

Last night was a hard one for me. Every time Russell turns another month older I am happy and excited as I think of how far we have come and all Russell has accomplished...but then the thoughts of his birth creep in...and I get sad...and I cannot seem to shake the overwhelming guilt I have about that first week after he was born....and last night for some reason it hit me harder than it usually does.
All day yesterday I thought of Russell and when he was born...about what was happening this time nine months ago....what I was thinking, what I was feeling.
It started in the morning, as I wrote my post on his turning nine months. I kept looking up at the clock and thinking "this time nine months ago, I didn't know yet...I hadn't heard the words Down syndrome, yet."  Then as the clock got closer to 11am I thought "now, now is when the Doctor came in, now is when everything changed" and I could close my eyes and still see her examining him, slowly, carefully...I can feel my heart beating faster....And then this was the time when they took him away, to the NICU....And then for a few hours in the afternoon I lose track of time and what went on....And my next memory was late afternoon early evening, and I was still crying not wanting to move from my bed...wanting to just disappear, having desperate thoughts going through my mind, thoughts I don't like to admit to...I wanted to just get out of there...out of that situation, I remember the words "how do I get out of this" running through my head...and what I meant was...How do I get out of being Russell's Mom....
Oh God how painful that thought is to admit out loud...I know there are so many Moms out there who will just not understand or comprehend that thought or that feeling...but I don't care if you judge me...I don't care if you don't understand what I went through...I just don't care....I always loved my son, and I know that to be true...but the amount of shock and disbelief and overwhelming sadness is one I cannot describe or do justice to with words...its impact was so profound that it did makes those thoughts happen.....and it was a part of this whole process of accepting Down syndrome, it was a part of the healing that eventually came....I cant change how I felt then, I cant change the fact that those thoughts did run through my mind not matter how brief they were...and that's where the guilt comes in....
My most difficult time on Russell's monthly birthday comes in the early evening. And as I sat and rocked him last night I thought of "this time nine months ago, I wouldn't even walk down that hall to see you" That one hurts me the most.....I didn't want to see my son. I didn't think I could walk down that hall to face what was happening...I was still in such shock, I knew if I saw Russell that this bad dream I was in was suddenly going to become very real...and I desperately didn't want that to happen. As I sat and held Russell watching him fall asleep in my arms, it brought tears to my eyes thinking of how could I have possibly felt that...how could I have not wanted to go see my own son...how could the feeling of "I don't want to be his Mom" have ever existed, even for that briefest of moments....Oh Russell how I wish I could take those thoughts back....How I wish those feelings had never, ever been felt. I always loved you Russell...But in those first hours after finding out I shut down...I didn't know what to do........I barely knew how to breath....
Remembering my Moms words "Jen, its not his fault"...kind of snapping back into reality and thinking with horror that people around me might be taking my shock and grief and unresponsiveness as I didn't love my little boy...I remember keeping my head down as my Mom said those words...I didn't say anything to her, and  weeks later when talking about it all she told me she thought I hadn't heard her....but I had. I had heard her and those words hit me harder than anything else did during that time.
Later that night Brad and I walked down to the NICU and I did see my son....its strange though, I cannot remember exactly what I felt when seeing him for the first time after...I almost remember not feeling anything....just being numb.
I am sad that I have to have these painful memories. I am sad that I cannot ever think of Russell's birth without feeling the pain of those first few days...without feeling the guilt I feel as a Mother....Does it ever go away....that guilt....will it ever just be gone or will it always feel this way? I just wish the guilt was something I could move past....

9 Months!

Nine months ago today my little boy entered this world, became a part of our family, and completely stole our hearts!

Nine months ago today, about an hour from now, at 11am, I was finding out my precious little boy had Down syndrome.

My heart broke when I heard those words. I was so afraid. I was so sad.

But my heart has healed in these past nine months, I am not as scared as I use to be, and I can honestly say I am not at all sad.

When Russell was born we didn't know what health issues he faced and that was scary for me....the not knowing...the uncertainty of what our lives were going to be like from here on out was frightening... But test after test was done and one by one they all came back perfect...

We have been blessed with a strong, healthy, handsome little boy, who has grown in leaps and bounds over the past nine months. Russell brings happiness and joy to our home...Our family just would not be the same without him.

When I look at the top picture in this post it makes me sad, because I remember the ache in my heart during that time...But this picture makes me smile, Russell makes me smile. Nine months has seen us all grow and change. Nine months has brought us peace. Nine months with the most amazing beautiful boy in the world has been more wonderful than I ever imagined!

Happy Nine Months Russell! I LOVE YOU!

Sickness, injury, and guilt...

This has been a rough week...very rough....It started with Russell getting sick....a weird sickness we cant quite figure out, we are not to sure what it is. It started with him having a high fever for two days, he was just cranky and sleepy and wanted to be held every waking second....Then he got a rash all over his body.

We took him to the Doctor to see what was up...the Doctor thought it might be measles, but there are so many different viral infections out there that all pretty much have the same symptoms it is hard to tell exactly what it is for sure. So we were told to just keep an eye on him make sure he keeps eating and stuff, keep him away from other babies and pregnant women and see what happens. So all week he has been VERY fussy and cranky, not throwing up or anything so that was good, just a fever that would come and go.

So last night was the WORST!!! Russell woke up at 11pm and stayed awake crying for the next three hours! We couldn't figure out what was wrong with him or what he wanted. Brad stayed up all night with me trying to comfort Russell...Brad is the BEST father...I am so very blessed that he is and always has been a very hands on Dad. Brad took turns holding Russell and standing and rocking him. We finally got him settled down and asleep....

Brad left for work around 4:30am....And here is where the second half of the story begins.

I wake up this morning to three messages on the machine....Brad is at the emergency room, he got bucked off his colt this morning and was waiting for X rays on his shoulder....sigh...then the guilt set in.

I feel HORRIBLE! I feel like it is all my fault. Brad stayed up last night to help me and I knew he was exhausted this morning. I should have just taken Russell out to the living room and dealt with him myself last night...But I was afraid Russell would wake the other kids, I was so tired myself from dealing with everything all week by myself that I let Brad help me...I shouldn't have. I just feel so bad right now.

Brad has a separated shoulder...a little different from a dislocated shoulder. It will take a few weeks to heal, and even then it may never be as strong as it was before. Its one of those injuries that is kind of always going to be there. The Doctor doesn't want to do surgery, as sometimes it seems to make an injury of this sort worse. Brad will just start doing physio therapy and hoping it heals good on its own.

I love Brad so much, he has just been the best father and husband anyone could ever ask for. He drove down from camp last night to be with his family and to see his baby cause he knew Russell was sick.  He came down even though he would have to wake up at 4am to go back up to work...he stayed up with me and Russell to help even though he knew he would be very tired the next day. Brad is one of the most selfless people I know....and I love him. Its hard to see him in pain and think it is my fault....sigh....

So its pretty much been a shitty week for us....Just one thing after another lately. But on the bright side Russell is feeling better  :)  and his spots are clearing up! So hopefully things get better from here....

Wordless Wednesday: Funny Faces!

And sometimes he is just so DONE having his picture taken! Ha ha

Random late night thoughts...

When I sit and hold Russell I often look down at him and just marvel at how absolutely perfect he is. He has the cutest chubby cheeks, big brown eyes that just sparkle when he smiles, perfect little hands and the sweetest little feet and toes...he is just perfect in every way.

Since having Russell I notice that I will just have the most random things go through my head...things I never really thought about before, until now...

Some random thoughts like these....

You know when you are talking with parents who are expecting a baby and you ask them if they are hoping for a boy or a girl....the usual answer you will get is "oh we don't care, as long as its healthy"....sigh...that NEVER use to bother me before, until I had Russell....and now I stop and wonder, is Russell considered "healthy"?? I mean when a person uses the term "healthy" they are really saying "well as long as nothing is wrong with it"....right?? I mean that's what I always meant when I would say that about a pregnancy....I remember after Russell was born, we waited a few weeks until we actually told most people that Russell had Down syndrome. While Russell was in the hospital I didn't want to talk to anyone about anything...so we waited. We just told people he was there because he was born a little early, because for the most part that was the truth....anyway...so people would congratulate us and say "well, at least he is healthy, that's all that matters" And my heart would sink a little...because I knew he wasn't the "healthy" they were referring too....and that hurt....It hurt a whole lot....and it still does....

It hurts when I look down at Russell as I am rocking him to sleep, and I am overwhelmed at how much I love this little boy, and I think of how some people would not want him...that on finding out he had Down syndrome some Mothers would choose to abort him because he is not the "healthy" they wanted...I even wonder about how I would have felt if I had found out during an ultrasound...would I have loved him right away, or would I have been so scared that I would have struggled about how I felt about him?? I really do thank God I found out after Russell was born...for me that was the best thing...because I held him first and loved him instantly...and from that point on nothing mattered, not even Down syndrome.

But just the thought that my beautiful little boy may have not been wanted by some one else because he had Down syndrome, makes me sad. It makes me sad to think of how if he was born in a different country he would be institutionalized by the time he reached five years old...because believe it or not in many countries that is exactly what happens to children born with Down syndrome...and it is horrible and tragic. It is sad because these are the most beautiful children, the most purest of heart and soul you will ever find...and they are treated as though they are less than....or not as worth as much as another.
It still hurts to think of these things...and I know many of you are saying "then don't think about them"...but easier said than done...when you actually live it and love someone who has Down syndrome, you do kind of have these random thoughts creep in out of nowhere, and you DO think of them....

There are still words that I have trouble reading or hearing...mental retardation...I know its a medical term and it is used to describe specific mental delays...but to me, those words stab my heart every time I read them...to this day it hurts to know those words apply somewhat to my son...special needs...these words haven't really sunk in yet, I have a son who is special needs...its a hard one to swallow at times because it doesn't yet feel real...and healthy...because I know what healthy means when people say it, and I know Russell is not the "healthy" they are thinking of.
Russell having Down syndrome does not bother me, but some words and phrases do for some reason, I don't know why, maybe because it is still all so new....maybe in time these things wont bother me at all...

I know this post doesn't make a whole lot of sense and I am kind of just rambling...I know most of these things I shouldn't care about or think about...but the truth is I do, I do think about them, and I do care about them....I guess sometimes I get sad because I see Russell's beautiful soul, his perfect little body and his wonderfully amazing spirit....and I am afraid no one else will see it...no one else will see him as perfect, the way I do....as "healthy".....I am afraid for him to be treated as less than. I just wish more people saw the beauty of Down syndrome, the way I have...

And that's all the random thoughts I have tonight because I can hear my kids down the hall making a racket and they are STILL not in bed...so they are about to hear some random thoughts of a different sort!!!

In the country...

Bet you don't see things like this in the city!! Ha ha...

The girls got kicked out of their pool so Daddy's horse could get a drink....

Daddy stopping in to say a quick hi after just bringing some cows in over the hills with the crew...

Daddy and his little cowboy :)

(Russell's first time on a horse!)

Not all negative

I started this blog specifically to share my feelings and struggles as I work my way through this world of Down syndrome...In the beginning I needed to write, I needed to just say what I was feeling, what I was scared of, what I was struggling to understand or feel....I needed to write down everything in my heart whether it was good or bad...writing has helped me moved past things, work through things, understand things. And although that is generally what I use my blog for, personal therapy, I want and more importantly need for people to know that not everything is a struggle, not everything is hard when it comes to Down syndrome and accepting it...There are very real and beautiful things in this journey I have just begun.....

I have never struggled to love Russell. Never.

The very second Russell was placed in my arms, I loved him, with a strong, powerful, unconditional love.

Down syndrome could not, and did not change that.

There is so much beauty in Down syndrome and I am afraid most people do not truly see that. And it might just be the case that unless you live it, see it, feel it, you perhaps may never really get to know the true beauty of it. What other people may see when looking at my son is a cute little boy who has a disability...What I see is pure

PERFECTION.

I cannot look at Russell without being amazed at how beautiful and perfect he is. I cannot see him smile without smiling myself. I cannot hold him without feeling his beautiful energy pass through his little body to mine...The calm and the peace that just radiates through him to all those around him.

There is a happiness and a joy and excitement in our home that was not here before. As we move at this slower pace in a world where the small things are suddenly the big things, in a world where there is time to stop and enjoy the moment...in a world where you don't take that moment for granted...in a world where things are simpler, purer, and just simply more beautiful...I am thankful for Down syndrome and how it has blessed my life. And even though it is not always easy and the sailing is not always smooth, the truth is...

Down syndrome IS beautiful!

He knows the drill...

Ok, these pictures crack me up every time I look at them. Lately whenever I get the camera out Russell instantly puts on this great big fake smile...Its just hilarious!! Its like he sees the camera and knows he has to smile! He just knows the drill, smile and Mom will go away! Ha ha

Isn't that just the funniest thing!! Ha ha, I didn't even know it was possible for a baby to give a fake smile...but let me assure you this IS a fake smile! Man, do I ever love this little boy!!

Another thing Russell has learned to do is scare the crap out of me!!! Russell has recently learned to rock himself while sitting in his little chair. He hangs on to the sides and then bounces himself up and down and makes it rock...I didn't know he could do THIS though...

The little stinker!!! I caught him the other day almost tipping himself over in his chair!!! Guess we cant leave the room anymore with him sitting in here!!

more alike than different

More Alike Than Different....

Words that have always brought me comfort...words that I know to be true...but yet somehow, someway, the "different" tends to creep in and take over my thoughts, my feelings, my emotions. And I don't even understand why?? Why do I let it take over?? Why can I not seem to eliminate the "different" from my thoughts...from how I treat Russell??

This post is kind of a jumbled mess, but I needed to do it, for myself...for when those times where "different" is present in my mind I can reread this and remember...More Alike Than Different!

My latest obsession when it comes to Russell's development is sitting...Russell can sit, but why isn't he sitting straighter?? I have worried about this and have been anxious about it and cant wait to ask our PT for advice on it...Its just something that has bothered me, I have wondered if I am teaching him to sit wrong, or does this have to due with muscle tone or what??

So one day earlier this week as I sat obsessing, I thought I would just drag out the old photo albums and look and see if I had any pictures of my other kids when they were learning to sit...and I did. The pictures above are not the greatest quality because they were older pictures and had to be scanned on here, but you can see each child in them, learning to sit.

Raistlin is at the top, he was 6 months old...Amy's picture is next, she was 7 1/2 months old.

Then comes Neleah, 8 1/2 months old....and last but not least, Jordy also 8 1/2 months old.

Do you notice anything about the pictures??? I did instantly, as I flipped through these photos...they were the same. Every one of my children learned to sit the same way...leaning forward, kind of hunched over, EXACTLY the same as Russell is doing!!

It brought me to tears as I realized....More Alike Than Different...Russell IS more alike than different!! He is learning to do things exactly the same way my other children did, but I failed to realize it until I looked back...I was so ready to think he was different that Down syndrome was making him do things in a different way, that I didn't realize that really he is not different at all!

It was an important moment for me in all this. It was a very big realization. Russell IS doing the things his siblings did, in the SAME way they did them and at the SAME time. I have always believed the words More Alike Than Different...but I never FELT them before....they had never before moved me the way they did after I finally, finally, realized them to be true.

The hardest thing for me in all this is I know full well that I am going to get to Russell's first birthday before I know it...that I am going to sit and think back on this year of all the sadness and worries and anxiousness and fear....and I am going to regret so much. I know I am going to regret being as worried and obsessive as I am about his development, I know I am going to regret wasting so much time being scared. But even knowing that I cant seem to change it....Its hard. Its hard to not worry, its hard for me to be a "go with the flo" type of person. I was never like that before, and since having Russell I have struggled to change that about myself. And just like everything else its a process and it doesn't happen over night. All I can say is that after realizing what I have this week...after seeing one of the major things I have been worried about become nothing to be worried about at all, I think I can lay a bit of my obsessiveness to rest. This one small thing, finding these pictures, it has changed me. It has changed how I am going to deal with Russell's development in the future. I need to be the one to start treating Russell...

MORE ALIKE THAN DIFFERENT!