When the Silence hurts...

This past week I have been feeling a little ache in my heart when it comes to Russell's speech. When he runs over to me and starts jabbering away excitedly and I can't understand what he is trying to say...Oh God how that hurts. How it hurts to stand there and watch his little mind working overtime trying to form words that just won't come out...How he tries desperately to tell me something but it just doesn't work for him. 

Lately I have found myself in tears when these moments happen, and in my mind I swear and curse Down syndrome for taking the gift of speech from my son.

The older Russell gets the deeper this ache becomes. It's not fair that my son can't tell me what he wants, how he feels, what he is thinking. I never thought I would have to dream of the day where I could have a conversation with one of my kids. I never dreamed I would spend long days with one of my children in silence. 

There are no words really to describe what I feel at times. I know with Moms who have children with Down syndrome I don't even need to try to describe this ache in my heart...They already know.

In front of friends and family I feel I wear a mask to hide the deep pain I feel sometimes as I watch Russell try to communicate. I guess sometimes I feel like as his Mother I need to take on every negative emotion that comes with this journey by myself. That I need to let everyone else just enjoy Russell and play with him and fuss over him...But me...I feel like I need to take on the fear, and the worry, and the heartache that sometimes comes, alone.

I know that sounds silly. I know I have a great support system with my family...But that feeling of doing this alone for some reasons has always been there. And I really think it all stems back to that very first day after Russell's birth...

I was alone when they told me Russell had Down syndrome. I sat on that Hospital bed taking the biggest blow I had ever felt in my entire life...Alone. I faced that moment of the deepest pain I had ever felt, by myself. That was the beginning of this journey. It was just me and my son...

And for some reason that feeling of it being just me and Russell has never left. It's like I can share all the amazing things that happen, all the highs and incredible things we experience with Russell...But the lows, I feel I need to lock in my heart and take them on alone.

So I sat thinking last night about all this. About that ache I feel when I watch Russell try to say something. And I figure there are two ways I can handle it. The first being I can let this ache grow into an unbearable pain that consumes me...I can dwell on that silence I feel daily...

Or,

I can take a deeper look into what that silence brings me, and I can be thankful for it.

So what does this silence give me?

It gives me a deeper connection with my boy. One that would not be there if there were words.

I know every inch of my child's face, every little detail. I know every expression, every movement...Because I have to. Because it all means something...I have to watch for subtle changes in him because that's how he tells me without words, what he is feeling...

I know my sons eyes better than I do anyone else's...Because they speak volumes...

Because when I look into his eyes, I don't need him to say words. I just know.

I have a bond with Russell that is stronger than it would be if there were words. Because if there were words I wouldn't have to dig deeper, or be as in-tune with him.

So I am thankful for the silence because it brings me closer to my son.

And when that silence is broken with a new word the joy I feel is indescribable...Each new word is celebrated...Treasured...And never taken for granted.

So I dream of the day I sit and have a conversation with my son, because it will happen. I know it will. It's the waiting that is hard. But I think of that moment and I know that the ache I feel now will all have been worth it...It will make that moment, when it finally happens, all that much more sweeter.

I am going to add something in here real quick. I know I have a few newer Mom's reading my blog, and I realize that the feelings I shared here may have made some of you sad or worried about the future. I remember feeling the same way when I read words like this from Mom's ahead of me on this journey too.

The thing is this. We all blog for different reasons. For me, it is about documenting the journey I am on with my son. I write to share our experience, the whole experience..Not just the good. Not just the happy...

All of it.

 And so that includes the times where it's not so easy. The past few years have been the most amazing of my life. I have learned more in three years than I have the past twenty. But, the truth is there are times where my heart takes a hit. The truth is I am not always a fan of Down syndrome. The truth is I am not always strong, upbeat and positive, and I share that on here, because it's real, and it's life.

As we all know when raising a child with Special Needs, there are intense highs, and there are some low lows. It's all part of it. I write from my heart. I write what I feel even if those feelings are hard for others to read. I do not write to inspire other Moms or comfort them on their journeys, because while we each have the common ground of having a child with Ds...Sometimes we are on different paths. Each of us take our own road...And it is up to each of us to find our own sense of peace. We can be there to support each other, but we can't always smooth the path for others even if we want to. That is up to us alone.

Each of us is on our own journey...

 And this one is mine.

I will leave you with this old video...I watched it last night and it cheered me up. Reminded me that the highs are always so much higher...And this boy is a blessing to our home.

Two things I don't need to hear

 So there are two things about Russell I hear pretty often from strangers or casual acquaintances that I just don't need to hear. And these things are not a huge deal but they rub me wrong all the same because they just don't need to be said at all. 

The first goes along the lines of this...

"He is not very affected by Down syndrome is he?"..."He's seems to be a very mild case." "He is so alert, I can tell he is high functioning."

Now while I understand people mean well I just don't need to hear this. It bothers me. It bothers me that because Russell has Down syndrome people think that automatically gives them the right to assess his intelligence. That people think they need to comment on how well he functions, or how smart he appears to be. I mean think about it...How would you feel if it was your child?

How would you like it if every time you took your child out some one felt the need to discuss how intelligent they are? It's kind of rude don't you think?

 Again, I am not talking about the people who actually know Russell, because I talk with people about his development all the time and I don't mind hearing their observations at all, because they know him. It's when people who have never even met Russell before say they can tell he is "high functioning". Especially when they say hi to him and he just sits there staring at them saying nothing back, and then they turn and tell me they just know he is a "mild" case. Um, really? He didn't even respond to you so how on earth can you tell how smart he is?! And while I am on the subject I hate the word "case"....Russell isn't a "case" of anything, he is a human being. I don't like that word being used to describe him in any way.

So when someone who has never met Russell blurts that statement out it annoys me. It feels like they are trying to be overly nice or something...Like they are trying to comfort me in some way by telling me my son is a "mild" case. When they go on to say he doesn't seem to be very affected by Down syndrome I just have to take a deep breath. He is affected and he is not a "mild" case. He has delays and there is no shame in that. We don't try to hide it, or ignore it, or pretend it's not a big deal.

I guess it bothers me that Russell will go through life with people feeling the need to comment on what he can or cannot do. And for me, I just want people to know they do not need to tell me how smart my son is because it really doesn't matter either way. 

The second comment...

"He doesn't look like he has Down syndrome", or "You can barely tell"

Ya, so, these are not compliments. When I hear these words they actually make me sad because what I hear you saying is that it would be unfortunate if he looked like he had Down syndrome...That people with Down syndrome are not very nice looking...Or it would be a shame to be able to tell he "had it". It comes off sounding like it is something we should try to hide or be ashamed of, or feel bad about.

Russell has all the typical features that come along with Down syndrome. He looks like he has Down syndrome because he has Down syndrome! And we are very proud of him and how he looks. He is beyond handsome. We love every single feature that makes him who he is. 

If you want to comment on how he looks and pay him a compliment...Tell us he looks like his brother, or his sisters, or even his Dad. But don't tell me he doesn't look like he has Ds. I find it extremely insulting...For my own son, as well as my friends who have kids with Down syndrome. We are proud of our children. We don't care if people can tell they have Ds. Down syndrome is mingled in every single cell of their body...It is a part of who they are in every way. And they are beautiful.

So those two things...I just don't need to hear them. I don't need comments on my sons intelligence and I don't need reassurances that he looks ok. That's all.

Eating issues

Russell's eating issues...It's kind of hard to explain. The thing is I think some of his eating issues are actually my issues that have over time become his, and that kind of makes me sad. To explain further...

Russell rarely bites his food. Why? Because I cut everything up. I have done this since he was very small. I am terrified of him choking. And I realize every Mother has this fear...I use to be nervous when my other kids ate certain things at Russell's age...But with Russell my fears are very different. They are quite extreme actually. I would have to say I am way overboard on my fears of something happening to Russell. To the point where I baby him too much. Like still cutting up his food. 

I still break up his toast for crying out loud! And it wasn't until just this past week where I started giving him a banana without cutting it up as well...And it took everything in me to remain calm as I watched him slowly eat it. I was a nervous wreck.

Yup...These are my issues not Russell's. And because I have that fear of him choking it has made it so he has that fear of taking a bite. He will slowly take the tiniest bites because he is unsure of what to do. And that's my fault. But we are working on it...

I started breaking his food up years ago when I noticed he did not chew. What he would do is stuff his mouth full and shove it to the roof of his mouth...Then he would kind of just swish it around and mush it up and swallow. No chewing. That scared me. And it was tricky because the roof of his mouth is unusually high, so it was always hard to tell how much food he had in there. I don't know, I have always been nervous watching him eat. He does chew now though, but still not terribly great.

Russell rarely, if ever tries new things. And I am not sure when that started or why, so I don't blame myself really on this one, he is just extremely picky. When you offer him something new he will instantly seal his lips and turn his head...He will not even try to taste it. I am getting tired of him living off of bananas, eggs, toast, cheese and pudding. He eats what ever we eat for supper, because it is cut up...But those things listed above are pretty much the only things he will eat any other time of day. He absolutely will not try anything crunchy. No crackers, no cut up fruit, nothing like that.

The funny thing is he will pretend to try something. If he sees Zane eating a cracker or something he will want one too, but he pretends to eat it. He will carry it around, put it to his lips and lick it, but will not bite. Although, I should say slowly, very slowly, we are making progress there as well. 

The other day at Nana's she handed Russell a donut. I thought no way will he eat that because it's not one of his "regulars"...But he did. I was shocked...And pretty excited! So I am hoping as we continue to keep offering new things he will one day start branching out and trying more things. 

Russell has always had pretty low tone in his mouth area. Funny I never thought about the muscles in the mouth, cheeks and tongue until I had Russell. I never thought about the chewing and swallowing process. But as we have worked with Russell over the past few years we have learned a lot. It's surprising how much work is actually involved in eating!

Russell has just recently mastered the straw. And for those of you with kids with Ds you know this is a big deal! It takes a lot of muscles to work the straw, and it is also very important for speech. He needs stronger muscles in his mouth to be able to form words properly.

Anyway, for a while I noticed Russell was not drinking from the straw properly. He would do it the easiest way possible...Instead of having his mouth around it tight the way it should be it looked more like this...

Or he would actually wrap his tongue around the straw and suck...Which wasn't good because it wasn't strengthening his muscles at all. The thing is Russell knows this is hard for him. Especially when we use something like a juice box with a smaller straw. He has to work all that much harder. When I would get a juice box out he would instantly run to the counter and point to his cup. He would want me to pour the juice into his cup because it was easier for him. *sigh*...

And as a Mom sometimes it sucks to have to make your child put in that extra work. Sometimes I felt bad for him and would give in and pour it into his cup. I don't do that anymore though because it doesn't help him. He needs me to push him a little harder for his own good.

Now he doesn't complain when the juice box comes out. And now he has that proper formation with his lips...

Sometimes I feel a little down about Russell's eating issues. When I see a Mom pass their kid a sandwich or a kid Russell's age sitting and eating some goldfish...I just think damn it, why can't it be that easy for Russell? Why doesn't he want to try new things? How long will it be this way for? How long can we keep giving him the same things over and over?

It's a waiting game. I can't force food down his throat. I can't make him sit for hours on end until he eats something, because he won't. I have to wait. I have to wait until he is ready to do this.
 And I guess that is ok. I mean if this is our biggest problem right now I should just be thankful. I know others deal with much more severe issues surrounding eating.
It's just Down syndrome you know, it gets to you sometimes...That something as simple as eating takes therapies, takes extra work, takes all that much more effort. It doesn't seem fair. Ah well...Like I said, this issue is minor compared to some of the other kiddo's out there so I shouldn't complain.

So there it is in a nut shell. Any advice for getting him to try new things?

On being a Mom

Sometimes I forget...

Sometimes during the hustle and bustle of daily life...The waking kids up in the morning and rushing them around so as not to miss the bus, the endless cleaning and cooking...The diaper changing and nose wiping...The heart to heart talks with teenagers trying to figure life out, to tending to scraped knees and stomach bugs...The driving kids into town for baseball practice or sleepovers...The mountains of laundry...The saying goodnight and "Get into bed!!" for the millionth time...

I forget...

I forget that being a Mother is the greatest blessing I have been given. One that has filled my life with more love than I think I deserve. And this morning I woke up with a full heart and feeling so incredibly  thankful...Thankful for the six beautiful little people that are mine.

The little boy who made me a Mom...

You never forget that first moment...The moment you suddenly become someones Mom. 

I will never forget the night Raistlin was born. I will never forget the feeling of awe I felt as I looked over at him for the first time...Hearing his cry...The words "I'm a Mom", running through my head feeling more like a dream than being real.

And now I can hardly grasp the fact that my little boy will be 16 next month. I am so proud of you Raist. You are just the young man I dreamed you would be. You have one of the kindest, gentlest hearts I know. You have the best sense of humor and are just an absolute joy to be around. You are strong, and loyal, and trust worthy. You are a fine young man. 

I am proud of you. And I love you.

My first born daughter...

I named you Amy because it was short, and simple, and sweet. Just like you. 

Seems like it was only yesterday that you were this tiny little girl sucking your thumb dragging your blanky around. And what seems like over night you grew into a beautiful young woman. You are full of energy and spunk. You have a laugh that is absolutely contagious. You light up a room when you are in it. People are drawn to you...You are an incredible young woman...And I am proud of you. And I love you.

My little Nephew...

Austin...Your name alone makes me smile. You are the sweetest boy. You have not always had the easiest life, and yet you have managed to keep your sweet gentle spirit and that great big smile. You have an incredible enthusiasm for life. You are unique in so many ways...And where some may consider your kind loving soul as weak...I know the truth about you. You are one of the strongest people I know. Where many would have crumbled and hardened inside...You stand tall and you shine bright. 

I am proud of you. And I love you.

Neleah Rose...

To know you is to love you. You are an amazing little girl. You have the most calm and loving soul. You are beautiful inside and out. There is a warmth that just radiates from you and touches all those around you. You are thoughtful, and kind, and always ready to help. You are sensitive to the needs of others in a way many people just are not...In a way that comes from deep within. You have a heart bigger than your body.

I am proud of you. And I love you.

Jordyn Mary...My little wild child...

You have been the center of attention since the day you were born. You bless our home with noise and commotion, silliness, laughter and love. You have a personality all your own. You can be the quietest little wallflower, or the loudest little fireball. But always on your own terms. You are full of exasperating awesomeness. You're my little wild and free beauty, Jordy.  I am so proud of you. And I love you so much!

My baby boy...My very last little one. My amazing little surprise blessing.

I almost don't have words. 

You have changed the very core of who I am. Everything about you is a blessing. You are full of strength and determination. Your little body may not run as smoothly as others...But your spirit Russell has a great strength and power that makes up for all you may struggle with physically. You are who you are for a reason. You are destined for greatness in your own way, I know it. And I am honored to have been chosen to be your Mom. I am fiercely proud of you. And I love you.

Being a Mom to these six kids is something I am deeply thankful for.

I want to remember as we go through the busy daily routines of our lives, that these days are going by fast. That there will come a day where we won't all live under the same small roof...That I won't always be telling people to clean their rooms or do their homework...To get their butts out of bed, or to go to sleep already! That the house won't always be noisy and full and messy. That one day no one will need me to give them a ride into town, or tell me about their day when I pick them up. 

There will come a day where instead of wanting five minutes alone of peace and quiet...I may wish for five minutes of conversation over the phone...

My kids are growing up, and these simple everyday moments need to be treasured. And these little people who call me Mom, who have the power to drive me to the brink of insanity...Are the same people I cannot live without.

Mid week update

We've been pretty busy the past few days spending all our time outside enjoying our summer weather! It's crazy, because this time last week we had a bit of snow and it was nasty and cold...And now here we are just days later and it's as hot out as it is during mid summer! It's like we skipped spring completely! I can't even remember the last time it was this hot in May! It's strange to be in shorts before the leaves are even out on the trees! Not that I'm complaining though...

So on the weekends we like to drive around on the Ranch. We throw the kids in the back of the truck and just drive. I never get tired of these views. Being able to drive through the country, not a soul in sight, not a single sound other than the birds. It's pretty amazing.

There are a million different lakes in this area. We are surrounded by them. The Ranch keeps little boats and life jackets at some of them for people to use if they feel like going out on the Lake. 

Brad took Neleah out on the boat, she was thrilled!

Look at the color of the lake, just amazing...So beautiful.

Jordy was too scared to go out on the boat. She has never really been fond of boating, and I don't think the  recent drowning of those two boys who went canoeing on the lake the other week helped her fears of the water.

They actually just found the boys bodies on Monday morning. They were still quite deep down in the water. I am glad they were able to find both boys together though. Hopefully now their families feel some sort of peace and can start the healing process...I know I will never look at the lake the same ever again. It's one of those events that moves you in a powerful way, and you just never forget...*sigh*

Russell did not go boating either...

He had better things to do...Like throwing rocks for the dogs...

Jordy spent her time looking for frogs...

Russell loves riding in the back of the truck. I do too actually :)

Other than that we have just been messing around outside...

I always think it's funny when the horse comes over to see what the hell is going on...lol

I am slowly getting use to Russell "Non-Hair"...Yesterday was the first day I could look at it without wanting to cry...*sigh*...I chant "It will grow back" more often than I care to admit to! Ah well...

And that's all I got for now. I keep meaning to do a more Russell update oriented post, but I always get side tracked...So I'll get to it soon.
Right now I have an angry eight year old banging on my bedroom door waiting for me to go on a bike ride with her because...I promised! So I'm off!