Honesty

I am one of those people who can face just about anything in life as long as I know what to expect. Tell me, prepare me, teach me. Things may be hard, but at least I'll be on familiar ground. That was one of the hardest things about Micah's diagnosis with Down syndrome. Nobody could tell me anything. There is no "normal" with Downs. I wanted to know when to expect him to walk, and was told somewhere between 1 and 5 years. I got that kind of helpful advice with every question I asked, and thus began my lifetime of living in the world of the unknown.

I find this very frightening. And yet, I've learned to live with it as the norm. I think this is also part of the reason we celebrate like it's our last day to live when Micah reaches milestones that happen naturally, just several years later than other kids reach them. When he learned to climb the ladder by himself to go down the sliding board, I was horrified and thrilled. (I had every right to be horrified. It lead to scaling 6' chain link fences.) And there are all sorts of everyday, non-events that we cheer uproariously for. Because in Micah's world, it's a big deal. Who knows if he reached that milestone early, late, or on time? We stopped worrying about those things a while back, and focus on the fact that he succeeded.

But there's the area of speech that I apparently haven't released my hold on. I still have this notion that my boy will talk to me someday. He'll tell me about the dreams that he has, how his day was at school, what his best friend's name is, and what he wants to be when he grows up. I believe it'll happen. And yet...

My boy is 5. And he has no speech. The few words that he has aren't used on a daily basis, and are so hard to understand to those not in his immediate circle. If you use your heart, and your imagination, you can sometimes make out what he's trying to convey. But most of the time it's just happy babble.

Lately, he's been telling stories. And this breaks my heart like nothing else can. He goes on and on, in a normal voice and not his usual yell. He makes elaborate hand gestures, and sometimes has to reach over and touch me. And I don't know what he's saying. I'm hoping his Voice Box helps with things like this, but in all honesty how much of a story can one tell from pointing to pictures?

Today I talked to the therapist that evaluated Micah for his Box. She's officially on my list of Best People Ever. Honesty goes a long way in my book, whether or not it's what I wanted to hear. I asked her if she thought there was any other reason that Micah wasn't talking yet, and she cited apraxia. We've thought this as well, but there's nothing we can do about it until he can verbalize things. But is there something else? Am I right in pushing so hard? She referred me to someone who may be able to help with my quest for words. And then as we were both being honest and open with each other, I asked the question that I've been afraid to ask for 5 years.

"I know that even for Downs he's late speaking. And I also know that he's well within the normal parameters. But he will talk someday, right?"

In a simple answer, she confirmed my worst fears. The ones that I won't even allow myself to think.

My boy may never talk.

I can handle this, too. I do what I have to because I don't have choices in these things. But I didn't realize how much I wanted it to happen. How much I needed it to happen.

Did you hear the shatter of my dreams? My world has stopped once again.

40 comments:

Burgh Baby said...

I'm so sorry that you even have to have a shred of doubt in your mind. I have to believe he will talk, maybe not perfectly, but he will. Pick up those dreams, ma'am.

Regardless, Micah is perfect exactly the way he is.

utmomof5 said...

Oh sweetie -- my heart is breaking for you. Don't lose faith yet, many more things may yet happen. God made Micah the way he is for a reason. He may have made him able to talk or he may not have, either way he is perfect!!

the planet of janet said...

listen to burgh baby mom, my sweet.

and even if he doesn't use words, your boy speaks to you every day.

Melissa said...

I'm with BBM, believe that he will talk and do what you can to fight for it.

If for some reason Micah doesn't talk at least you will have done everything you can to make it happen.

(((hugs))) my friend, I wish I could say something that would make you feel better.

Allison Says said...

What Burgh Baby said.

And even if he doesn't, he's still an amazing, perfect, human being. He's so sweet and beautiful and wonderful and happy.

::hugs::

jeri lynne said...

Thru words or a device your precious angel will have words..or he will wait till your on the potty and run up and hug you and say I love you..don't give up hope..did you hear that? it was my heart shattering with your world crashing..

Debbie in CA : ) said...

I told myself I was taking a break from the blogospere . . . helps that my feedreader seems to have become a dastardly dude and refused to update (and ate most of them when he did . . . I heard him burping). So when I dashed on here for a quick "look up" of some info I peeked my feeder and noticed you had posted (as usual, so regularly), so I stopped to have a look.

Needless to say I just threw away my no-blog resolve, but I simply had to embrace you with a comment (and a virtual hug -- "O"). I know this all too well. My two special boys traded milestones that would never be . . . talking, walking, you know -- all those "normal" things. I have wept an ocean of tears over "what-wonts" as much as "what-ifs" and I can tell you it is normal . . . BUT IT HURTS TO LET GO!!!!! (But let it go, you must, sweet friend.)

When we cast aside the trappings of the world and FULLY embrace the sovereignty of God and His ideal and wonderful plan for Mr. Micah or Mr. Matthew or ... we will be free to live in full joy. I need not explain that I have yet to attain that after 20 years!!! But, I am hopeful and I make progress moment by moment, little by little.

So, let the tears come (God catches each one), and when you are done rest and replenish, but know that you will go on with a fresh burst of energy once you've recovered. Just be prepared to fall again . . . but remember you won't stay down. I PROMISE! I've got my hand out to help you up and back on your feet; and I'm just one of many, and when you add us all together we're a speck compared to the mighty hand of God.

Speech is not just a collection of words. Storytelling is a fabulous step toward communication. Micah has lots going on in there. That's the GREAT news! Also, Stephen Hawking has done a fairly adequate job of addressing the mysteries of the universe with a talking box. I'm not giving up on Micah or the steady advance of technology. (Hey, you never know what my Rachel may come up with next.)

Okay, I've filled up your comment box again, so I'm off and off the computer -- 'Til next time ~~

Love to you and yours,
Debbie

Becoming Mommy said...

"telling stories" though sounds like a step in the right direction...the one that leads to speaking. Inflection, pattern, and gesticulation are all part of the speech process so I'd imagine those are all mini-milestones.

Karen said...

Oh Karen.......I'm sorry. I understand your pain. Have a good cry. Let all the fear out, then go hug your sweet son and you will realize that everything will be just as God has planned it. There is always peace in that.

Flea said...

Karen, I'm sitting here with tears streaming down my face. Till I read Debbie in CA's comment. Know that so many of us hurt with you and love you and your family. She's so right about all of us together being a speck in comparison to the hand of God. But cry and let it go.

And becoming mommy makes sense. Isn't story telling a huge step on that road to communication? Especially if this is something new for him?

The Sports Mama said...

I have faith that when Micah does eventually speak, no matter what "language" he uses, it will be to you. You, who is his biggest fan. You, who are his staunchest ally. You, who is his unflagging believer in the unbelievable.

You, who is his heart.

AZ Chapman said...

I think Mich can talk . It sounds like he wants to I hope y hear his voice hugs

Jenn said...

Aww, I have tears.. I wish I knew the right thing to say,but really who does? Just know the day you tell us all, what he does say to you we will all be almost as happy and excited as you are to hear it!

Karen Deborah said...

What I hear in this message is how you all celebrate Micah's milestones. He's trying very hard right now with his stories and hand gestures. Even though I haven't met him I see the light on in his face. Let God reveal the plan one moment at a time. Each unique and different moment and keep celebrating what he CAN do!
The plan may be different but Micah is bright I believe that. I believe in miracles.

Trannyhead said...

You poor thing - it really is an up and down roller coaster with him, isn't it? But then again - isn't it an up and down roller coaster with all kids?

I'm thinking about you ...

Colleen said...

What a punch in the gut. I'm so sorry. But you're right...it was better that she was honest with you, even if it wasn't what you wanted to hear.
That being said, it doesn't mean that it doesn't hurt any less. But it does make it easier to mentally prep yourself to continue the good fight after the shock and pain let up a bit. So here are some hugs, and my shoulder (perfect to cry on, lean on, and/or punch on), and we'll continue our prayers because behind that sweet smile of his is a whole bunch of words ready to come out.

Lots and lots of hugs...

OHmommy said...

Oh, Karen. My world just stopped right along with yours. I don't even know what to say, girlfriend. I can't even imagine. I am adding you and your family to my prayers because there is hope. HUGS. And even more HUGS.

Michelle said...

Oh, Karen! How heartbreaking for someone to force you to think about crashing your world down upon you. Many of the commenters are right that he talks and communicates in so many ways with you already -- I still remember your joy at his first "I love you" -- but I know what you mean by talking. And the uncertainty of it all is the part that is the hardest, whether you give up on a dream (that may or may not come true some day) or keep hoping against hope. Regardless, it's painful, and I can only hope that some other joy or victory will come your way soon and remind you of all that he has succeeded in. And remember how much he got out of the box at trial and how quickly he took to it. There is *something* in there waiting to come out. It just may not be quite the way or the message you've dreamed of. *hugs* and prayers to you, knowing I have nothing really of comfort to offer besides that.

Leanne said...

Hugs.

Don't lose hope.

Aimee said...

Hugging you from the eastern half of the state . . . Don't let go of your dream too quickly, maybe just loosen your grasp a little.

JennyH said...

I still have faith in him (and Max!). You know, Max wasn't really talking much at age 5 either. OK, he still does not talk a lot but he does have several words and seems to add new sounds/words on a regular basis now-a-days. Max never really tells me stories like Micah does. I think Micah is doing great just by doing that- at least he is trying.

Cathy said...

For years we struggled to get my cousin to speak. We finally gave up with speech therapy and decided to try just teaching sign language (generally easier to learn anyways) It was awesome. She went from using three to five words ONLY to a vocabulary of over 100 signs which allowed us to better understand her and communicate. She is now 14, speaks (not very clearly) but now signs thousands of words (I think unfortunately now that I am 28 I am no where near her and thus only know the original 100 or so words.)

Bluepaintred said...

oh man, that bites!

But, it's never hurt ANYONE to keep hope in their heart.

kari and kijsa said...

Sweet friend,

You are truly wonderful and you are the very best of mothers. Know that you are in our thoughts and prayers. May God surround you with peace and comfort and blessings.

blessings, kari & kijsa

imbeingheldhostage said...

**(((HUGS)))**

No words, just hugs.

Karen MEG said...

Karen, this was a heartbreaking post.

Micah is a perfect little boy; and even though the therapist was straight with you that talking may not happen, it's still a big question mark, he may indeed at some point.

In either case, he does communicate with you as is clear from the loving posts that you have captured here.

I'm glad I read the post above. It was beautiful.

VDog said...

Oh Karen. I understand the uncomfortable feeling of the unknown. Just sucks.

But you have a beautiful little boy and I know that you will get through all of the challenges with grace.

(((HUGS)))

Andrea said...

I think Micha wants to talk. He wants to comunicate. COme on, he learned how to do the "L" sign on he forehead, he will be able to communicate with you. Have you tried getting him to watch the movies, "Signing Times." Or baby signing times? Those are simple sign language skills that infants do and maybe that will help Micha communicate with you. Just a thought.

I am sorry that you are feeling so down. But I think Micha wants to talk and he will. Keep up your great work.

Karen said...

I just want to say that never ever give up hope. Honesty and realism is great but will never take the place of hope and miracles.

God Bless you! Micah is so lucky to have you as his mother and from everything i have read about him you are lucky to have him as a son. he sounds like a gem with or without speech.

HalfAsstic.com said...

Oh honey, I would give anything to be able to make this all easier to bear. To make your dreams less breakable. I am so sorry for this and all the constant struggles you go through day to day.
Meanwhile I will pray too. For Micah and for you and your family.

Don Mills Diva said...

Karen - I am so glad I read the above post first so I could see how down you felt before you wrote something so uplifting.

Your faith is an inspiration.

Laski Gal said...

Karen.

Micah is so blessed to have you just as you feel so very blessed to have him.

Whether words fall from his lips or not . . . he will always tell you stories, you will always know his heart.

And, YOU will always be his voice.

Poltzie said...

I'm sorry Karen. I cannot even imagine how that must feel to hear. Luckily he has a voice in you!

Michelle said...

I've not been in your shoes, in that situation, so I won't pretend to say I know what you're going through, but I can imagine that it was difficult to hear. Just remember that was her opinion, professional and honest as it was, but no one can predict what Micah will or won't do...there is still reson to hope and believe that in same way Micah will find his voice.

SuburbanCorrespondent said...

Ouch. But I would keep on hoping. What else can you do?

Have you tried signing?

Beth from the Funny Farm said...

Continue to celebrate all of the other milestones while keep on working with him and speech.

Cecily R said...

I don't even know what to say. My heart hurts for you. And for him.

But I choose to believe he'll speak. And like the others who have said it, even if he doesn't, he is perfect. I truly believe his little person is already worthy to be with God...his life here is a gift to everyone who he touches. And because of your blog, that's a heck of a lot of people.

Debbie Yost said...

I know that fear all too well, but have not heard it. I am so sorry it was said to you. I hope one day Micah will prove her wrong. It is good to be prepared and to find other ways to communicate with Micah, though. I will continue to pray for his speech and if that is not God's will, for another way that you and your beautiful boy will be able to communicate.

caramama said...

Oh Karen! I'm so sorry that you had to hear that! Big hugs to you!

Vocal speech is one thing, but he has been communicating in other ways. So that's a big thing, right? I was also wondering if you have tried signing with him.

Even though you were obviously ready to ask the question and hear an answer you didn't want to hear, I also know you won't give up. You will keep trying and see what you can overcome together! Good luck!

Irene said...

OK, first off, I want to tell you that I am a terrible blog friend. Terrible. I stick way too much in my reader and then realize I have hundreds of unread posts. I get overwhelmed, so I close the whole thing out. And I miss out on things like this.

I am so sorry. You know, really they HAVE to say that he may never talk. But they do NOT KNOW. You have such a dedication and love for this little boy. And he has such an intense urge to communicate, that I just KNOW he will someday. Yes, it is later than most. But he will.

I am not sure if you talked about this before, and I am sure it has been explored, but has signing worked at all? They tried it with Caroline a bit, but she is much more delayed than Micah. I feel guilty not pushing signing more, but I really feel it is a huge long shot. I remember someone asked me if Caroline uses her hands for purposeful action. Yes, she reaches out for things, plays with toys etc. Then she is capable of learning signing.

Anyway, as I said, I know that has been explored, but I don't recall if I ever read anything about it.

Well, please take care, keep hoping and definitely keep praying. And never ever ever give up! (I know you won't.)