18 Months!

Dear Russell...

Today you are 18 months old.

Its hard to believe it has already been a year and a half since you came into our lives...You have come a long way little buddy...

We loved you from the first day we met you...And that love has just grown stronger everyday since...

You are doing so many great things...Crawling everywhere, getting into any and everything...

You are CRUISING now!!

You will walk along a couch, or in your crib and playpen, and I cant tell you how proud I am when I watch you. I know how hard you worked Russell, you amaze me everyday...

You are taking steps now when we hold your hands!! I am excited every single time I see you lift your leg and bend your knees...You have big stomping steps and it makes me smile every time I see you do it.

I cant even imagine how I will be able to keep up with you once you are running around...But I cant wait!

You adore your siblings...

Every morning you crawl to the boot room to watch them gather their stuff up to leave for school...And you say "BYEE" to all of them and blow kisses and wave...And then you stare out the door and watch as they go up to the bus...And you get sad. You miss them during the day.

And every day after school I stand you up to the front window so you can see when the bus comes...And you see the kids coming through the yard you get all excited and bang on the window and say "Hiii"

You are a dog lover now...You have mastered that fear...

But you are still terrified of horses...So we work on that fear next!

The thing I dread doing the most with you...Bath time!

You have always hated bath time...You spend most of your time trying to climb out of the tub...But lately you have settled down and learned to enjoy it...

A little video of you signing and saying BATH...

I love hearing your little voice as you attempt new words, its very exciting to hear you trying to talk!

Russell there just are no words to tell you what you mean to us, to our family.

You have opened our eyes and our hearts...We are forever changed.

And all because of you and the special little spirit you are.

You are meant for great things Russell...I know it.

I am so blessed to be your Mom. I love you so very much.

Happy 18 months!

A post for Me

Tomorrow Russell turns 18 months old. He will be a year and a half!!
I cant believe it has already been a year and a half since he has been in our lives. Time has just flown by...Kind of makes me a little sad.
I have been a little emotional lately...I wrote in my last post how its been hard on me to feel so vulnerable when it comes to Down syndrome...To feel so weak.

So I felt I needed to do a post for me...A post to show myself just how far I have come in all this...Because as weak as I feel some days...I know I really have come a long way.

*In the beginning I didn't feel like I was strong enough to be Russell's Mom. I didn't think I could do it...Whatever "it" was...I didn't think I had enough inner courage and strength to go down this path.

But I AM doing it...And I AM strong enough. And its not as hard as I thought it would be...

Because loving Russell is not hard...Its perfectly easy :)

*In the beginning I felt like I didn't even know how to be a Mom to Russell. I was scared that Down syndrome was going to make him different than my other kids...I felt I had to hold him different, feed him different, play with him different...I felt like every one knew how to parent Russell better than I did. I felt like the Nurses, the Doctors, the Therapists, all knew my son better than me...

I was wrong. Russell is MY son and I know him best. And I have learned to fall back on my instincts as a Mother. I have learned Russell is no different than my other kids, and everything about caring for him is exactly the same.

* The first few months I was terrified every time Russell sneezed or coughed, or his eyes didn't seem to focus, or he seemed to "zone" out...I was paranoid of him having seizures, of him not being able to see, to hear, to understand. I rushed him into the Doctors more times than I can count just being scared to death he didn't seem right, or I thought he may be sick. I thought his body was different inside because he had Down syndrome. My Doctor would always take time to reassure me that everything inside Russell was the exact same as the other children. Nothing was wrong with his body, his heart, his lungs...Anything.

He is a healthy little boy and Ds doesn't affect him.

Now, I don't panic when Russell has a cold, or isn't feeling good. I don't rush him to the Doctors anymore. I realize that Russell actually happens to be one of the healthiest kids I have!! He is very rarely sick. I don't panic about the Down syndrome...I finally get that Russell IS the same inside. The extra chromosome didn't make his body different health wise than the other kids. And I realize that we are blessed Russell has no health issues because I know many other kids do.

* I use to cry at even the mention of Down syndrome. I remember not even being able to make it through a sentence without tearing up and pausing to keep from bursting into tears...

Now it doesn't phase me and I talk about it all the time! Sure there is the odd conversation that makes me emotional, but not at EVERY mention of Ds. It is just a very natural part of our lives now.

* I use to be scared to death every time we redid Russell's blood work and six month check ups. I swear for the first year I held my breath every single time, thinking this time will be the time when everything finally falls apart, when we finally find something wrong with Russell.

I have now learned to let that go...Nothing is wrong with Russell so I can stop waiting for it...He is fine. And if one day he is not, if one day his blood work comes back showing somethings wrong...We will deal with it. But until then, I need to not worry myself to death about the what ifs.

* I use to obsess with Russell's Physical Therapy...And I mean OBSESS! I worried NON STOP all day long if I had done enough...Had I worked with him enough in every area...Did we waste to much time just playing? Was he not doing this or that yet because I hadn't worked with him enough...Or was I doing it wrong? Was I missing something...Was his slower development MY fault.

Oh man, did this ever take me a LOOOONG time to get over. But I did. I have finally realized that Russell is NOT a project. That he doesn't need to be "worked" with all day long. First and foremost, he needs to play, he needs to be a little boy...And nothing I do or don't do is affecting his development, its not slowing him down. He is going at his own pace and steadily moving forward. We do enough PT and OT, and I am not worried anymore.

And that feels good, really good.

*I use to worry also about Russell's future, about school, about what he will do or be in life. It scared me badly to let my mind go that far ahead in time. Its was painful and difficult for me to see older people with Down syndrome...I just couldn't think of the future without crying...

Now the future doesn't scare me. I almost laugh now when I think back to that first day finding out Russell had Ds...To how my first thought was...That's it, life as I know it is gone...he will always live with us, always need being taken care of...Never be independent...I laugh because its so not true. He will have a job and he will be independent...I just know it, everything in me tells me this is true.

And if its not?? So what!

I could care less if Russell lives with us forever. He is Russell, we love him, and we would LOVE to always have him close!

* I use to be scared that the kids would be ashamed that their brother had Down syndrome..That they would be embarrassed.

How wrong I was! They couldn't be anymore proud of Russell than they are right now! Every single thing Russell does amazes and thrills his siblings...And they tell everyone their brother has Down syndrome, because they are proud of that, because that's what makes Russell who he is.

* In the beginning I thought Russell was my punishment from God. I thought this is what I got for every wrong thing I did in my life. I was angry with God.

Now, I cant even believe that thought crossed my mind. I cant believe I thought God punished me and then abandoned me. When really all he did was give me this incredible gift. He chose me to raise this very special spirit...He chose me because he knew I would love and protect Russell...And even though I didnt realize it myself,  he knew I had the strength and the courage...And he knew, in time, I would see all this.

I would see Russell was a gift. 

There are so many things I didn't mention in this post, because really there are just to many to list. I know I have come a long way in this past year. I have overcome many fears, I have learned and grown in ways I never imagined. There are still many things I wish to be able to overcome in the future and move past...

And who knows, maybe this time next year I will be posting that I have finally been able to move past those things.

All in time...

For now, no matter how slow the progress for Russell and I...It is progress and I am proud of both of us!

What I hate about Down syndrome...

Is that it makes me weak.

I have always prided myself on being a strong person.

I guess you could say I have a more dominate personality than most people, I am not what you would call a push over. When I am mad or upset, you will know it, and you will probably learn some new words too!

I'm pretty opinionated...Over the years I have learned that sometimes, whether I am right or wrong

(but for the record, I'm mostly right)

I just need to keep those opinions to myself. I guess that comes with maturity...That not everything you think needs to be said out loud.

For some reason this took me YEARS to learn...And then YEARS more to actually put into practice!!

Being strong doesn't always necessarily mean being outspoken...Sometimes being outspoken is just being plain rude, and being strong is knowing when to keep your mouth shut and walk away...

A lesson everyone could benefit from learning right!  Anyway...

So this is how I have viewed myself for years...As a strong person.

And then along came Down syndrome.

And it changed me...But not in a way I like.

The day I found out Russell may have Down syndrome I was brought to my knees, for the first time in my life I felt completely beaten down. Completely crushed, broken.

A part of me didn't even want to ever get back up again. I was devastated...After making it through that first week...That first heart wrenching week, the devastation left...But in its place I was left with, Vulnerability. Weakness. Fear. Any, and Every thing could bring me to tears. Any time we hit the smallest bump in the road when Russell was in the NICU, I was once again brought to my knees.

And I hated being so weak, so emotional, so open, so readable...So exposed.

And I have to say that this is what I hate most about Down syndrome.

That weak feeling.

I just don't feel like me anymore. Yes, I have changed in many good ways. I am more open and tolerant, I am more accepting and aware and sensitive to issues...And sometimes yes, it is good to be emotional about things around me...Its just I don't want to be EVERY time, about EVERY thing.

Its difficult for me to know that this one thing can drop me at any given time. That when it comes to Down syndrome I am not strong.

Down syndrome is like a Roller Coaster.

It has high, highs...And low, lows.

And it can dip and turn at any given moment. You cant always see that bend in the corner before you hit it...And you feel unprepared and shaken up when it does hit...

I have been thinking about this since last week. That one post I wrote about finally allowing myself to just let things slide that bother me...The comments...The stares...The unintentional hurts...

I felt good after writing that post...I felt free in a way...Free from those emotions...

And then a few short hours later I was watching TV...Damn the rain!! Had it been nice outside the TV never would have been on! Anyway...A woman on some stupid talk show I cant stand in the first place, said some hurtful things about people with disabilities, and Ds specifically. It crushed me. I started to shake and cry. I turned the TV off and paced the room. I was so upset. So hurt.

I was back to square one...Again.

The thing is how do you learn to tune those things out? How do you teach your heart not to feel that blow, that initial pain? How do you learn to not let it absolutely kill you inside when you hear someone talk of your child like they are nothing, insignificant, unworthy of respect and kindness? How do you learn to let these things slide by without even feeling them?

I feel like maybe some of you Moms have the secret to all this...because there is a peace and a calm and happiness surrounding these Moms who are ahead of me in this journey, that there must be some sort of secret!

For me right now, as much as I try, the stares bother me. And when it happens all I can think is how much worse it will get with each passing year. And there is nothing I can do about it. I feel a desperate need to toughen up for Russell's sake, before he grows up. Before he notices these things hurt me so deeply.

For me its the comments on facebook...Damn facebook, really does anything good come from that wretched social site! I hate the status updates from all the ignorant jerks who don't think before they speak...I hate the jokes about all the "slow" kids...Or "your so handicapped"...I hate all the people who "like" those comments...I mean really?? You "LIKE" this comment, why? Because its so witty and intelligent? Its so respectful and considerate of others?? People "like" that stuff!

And how do I teach myself not to tear up when I read these things...After all, my kid is the "slow" those people are laughing at. My beautiful, precious baby...Is a joke to some people.

How do you make yourself be immune to these things? To not let it break your heart,

EVERY. SINGLE. TIME.

I don't know how. And it makes me angry...It makes me angry it has power over me. I don't like feeling weak. I don't like feeling like a ton of bricks  is hitting me when I hear or see something that pokes fun at people like my son. I desperately want to be stronger, the way I use to be. I don't want to constantly feel like I am back to square one all the time...

Like I am just starting my journey all over again.

A lot of Moms I know have written about how they feel they are finally home again, home from "Holland" now, and they are at peace... And I'm so jealous...It kills me to admit I am not there yet...

I am not "home" and I don't know when I will be.

I miss home.

Of course, don't get me wrong...I DO see all the beauty Holland has to offer, and I don't think about that trip to Italy I missed out on this time around...Holland IS lovely...

But I still miss home.

Wordless Wednesday...Our House :)

One Step Closer...

We are one step closer to walking!!

And one step I realize means months and months from now...But it IS a small step towards walking all the same.

Last week Russell side stepped for the very first time along side of the couch in the toy room! The girls came running in to the kitchen clapping and yelling and pulling me to come watch...And sure enough, there was our boy side stepping along side of the couch! It was one of my proudest moments. A moment that made me tear up...One step closer...We are one step closer!

What is this video...15 seconds long?? But this short video clip has me in tears every single time I watch it. Because Russell worked so very, very hard for this milestone. Months and months were spent on all the things leading up to this. He needed to build his strength, in his arms, in his legs, in his sides. He needed to learn balance, he needed courage...Russell is not a go-getter, he is not what I would call driven, he is not fearless. Russell is a very cautious little boy, he takes his time, if he is scared or unsure he will not attempt something...So along side of all the physical work Russell did he had to get there mentally as well...

And he did.

He had to learn to crawl, he had to learn to get up on his knees and be able to hold himself there, he had to learn to pull to stand...

And he did it! He did all of it!!

I am sitting here trying not to cry as I type this. This moment has meant everything to me.

I have often sat and day dreamed about what it is going to feel like the day I feel Russell's small hand slip into mine as we walk, both of us, down the road here...To the river...I can close my eyes and see it...My little boy toddling along beside me, holding my hand.

I know I have written about this before, but I have flash backs to that first day in the hospital, finding out Russell had Down syndrome...How desperate, crushed, and scared I felt. I remember closing my eyes and trying to fast forward time, and I thought of spring time here on the Ranch...I thought of my boy in a pair of coveralls and a baseball cap...Walking beside me...And I remember crying and thinking, if I can just make it to there, to that point in time, I will be ok. I just wanted for Russell to be healthy and happy and to be able to run and play...And its all happening, slowly.

I am blessed because my boy is healthy, and he is happy...And there will be a spring where he does run around and play, in a dirty pair of coveralls and a baseball cap...And I cannot wait for that day to come, and you can bet your ass there will be a picture of it posted right here!

And for now, I am just thrilled that we are one step closer!

(On a side note...Anyone else having issues with Blogger today?? Mine is acting stupid and I cant comment on any one's posts!! Hopefully it starts working again soon!)



The Blogging World...

Before I had Russell I had never even heard about a blog before...Never even knew they existed! I came across them late one night a week or so after Russell was born...He was still in the NICU and at nights when the house was quiet and everyone was asleep, I would sit up alone at my computer looking up every and anything I could about Down syndrome.

At first all I could find was all the medical facts...That looooong list of everything that could be wrong with Russell. Then I would look up anything that would tell me this was all a mistake...Maybe the tests were wrong...Maybe he only had Mosaic Down syndrome so he wouldn't have it that bad, lol, it all sounds so silly now, but yes, I looked those things up.

And then I would search for pictures of children with Down syndrome...What did they look like? Could you always tell that they had it, or could it be so mild that maybe Russell would make it through life without anyone really knowing...Ha...Again silly I know.

And while looking up pictures, I came across blogs. And it was the blogs that saved me. I remember sitting up for hours on end reading, crying, and feeling a hope I had never felt since receiving Russell's diagnoses.

I saw that life went on for these families, I saw that they were happy, they were "normal" and that their children had blessed their lives...I saw that everything was going to be ok.

I debated at first on whether or not I even wanted to start my own blog.
I mean sharing what you think or feel and your lives online is a little bit scary. I debated on whether I wanted an open blog or not. And as I was deciding all I could think was that if everyone had a private blog, where would I have been in this whole Down syndrome process?? How alone would I have felt...How guilty about some of the feelings I had had in the beginning not knowing others felt the exact same things. How much comfort I took in seeing how families embraced this journey.

I knew I wanted an open blog...It was like returning the favor other Moms had done for me. Thinking that maybe one day another Mother just beginning her journey would take comfort in our lives...In our blog.

I know some people don't post pictures on their blogs or use their real names, because that is kind of a scary thing too. There is just so  much out there in this cyber world to be wary of. I post pictures because that's what comforted me the most when I read other blogs. These children with Down syndrome didn't look scary or ugly or deformed...They were children and they were beautiful. I don't want what might happen or could happen to hold me back from all the good that can come with sharing our lives with others. That's not the way I want to live. I don't want fear to control me.

I follow a lot of blogs, and I follow different ones for different reasons.

I have to be honest, at first I started following blogs to see what other kids Russell age were doing. I wanted to make sure Russell wasn't falling behind...I wanted to make sure I didn't miss anything other Moms were doing in OT or PT with their kids. I followed blogs to be able to compare Russell to others.

And that is the LAST reason I follow blogs now. I don't compare Russell to other kids anymore.

The blogs I follow now I follow because I have made true friends from them. I follow them because I feel connected to them in a very strong way. I cheer on all the accomplishments their kids make, all the milestones they meet. And I get just as excited as when Russell makes progress. Because with Down syndrome, you feel like ANY kid with Ds is your kid. You feel protective over them, excited for them...You love them.

I follow blogs because I feel connected to the Moms. We help pull each other through tough times. No one understands how we feel better than each other. Because we are not judged or looked down on for our thoughts or feelings, because usually at one point or another they have felt the exact same things.

I follow some blogs because they make me laugh. They are Mothers who have children with Ds but they don't always blog about it. They just blog about life in general...I follow some blogs because I feel their kids are Russell's little friends. I have "known" some of these kids since they were just a couple months old. We have shared so many first with each other...Rolling over, sitting up, pulling to stand, crawling, first birthdays...And I cant wait to see into our futures and what things our children accomplish.

I follow some blogs because they have older children. These Moms are ahead of me in this process and there is a peace and calm about them that I so admire. They have so much knowledge and experience that is just so valuable...They are the Moms who when they read a post where I am struggling they say they understand, and that things will get better, and that I am doing a good job and they are proud of me...Words like that pull a person through, they touch you in a way nothing else can. And I know I can talk to any of these Moms and they will help me anyway they can. And the other Moms who are at the same point in all this as me, relate, encourage, and understand you. All these Moms share my highs and lows. They make this process easier, smoother, and a lot more fun.

The Down syndrome community or "club" was one I did not for a second think I wanted to belong to. I didn't want to meet or talk to other Moms who had children with Down syndrome. I didn't understand why people thought I would want to. I think in the beginning I just wanted to be left alone. I didn't want to be in a "group" or anything like that.

But now it is something I take great pride in...Something I feel blessed to belong to. A group where you cannot find greater support and encouragement. Its a tight knit community and we all look out for each other. It is something I have never quite experienced before. It really is a beautiful thing.

 So thank you to all the Moms out there who have helped me this far, who have emailed and commented and "liked" all the things that have been so huge in Russell's life up until now.


And to all my friends and family who read every now and then and follow along, who let me know they are excited about the progress Russell makes and the milestones he hits. Every time one of you "likes" a status I post about him doing something new it brings me to tears...Just to know you guys get it, how big a deal it is in our lives, that you care enough to be a part of our journey, to learn about Down syndrome...And show your support. This has been kind of a mushy post...But every once in a while people should tell others what they mean to them, thank them for just being there and caring...
So that's what this post was about :)

Your support has meant the world to me! And little Russell too...