Tuesday~October 20th, 2009
It was about this time last year that we found out Asher would need a brain shunt for hydrocephalus. I’ll never forget that phone call, when at the beginning, I couldn’t process the severity of his condition, what the nurse was saying, and I thought it meant a mother’s worst fear could be happening to our family. But it wasn’t. It was hard and scary, and of course watching him go through brain surgery at the age of one was no walk in the park for any of us, but it wasn’t my worst fear, and I’m thankful for that every day.
Now Asher is Mister Good-To-Go, waking in the morning and taking inventory on his household,
“Bruddow go?”
“Your brother isn’t up yet, honey.”
“Tia go?”
“The dog is on her bed.”
“Oh.”
“Daaaddyyyy!!!” He runs at him and throws himself in for a hug.
He’s pure unsolicited joy, that Ash Man.
He’s joy even though he’s had to deal with some kind of medical issue or emergency since the day he was born. Yeah, the day he was born. I’ll never forget that either. How he drank and drank my overabundance of milk that comes way too quickly, then spit up and spit up and spit up until he aspirated and ended up in the NICU, tubes being forced in, screaming, me standing to the side, helpless and wishing I could breathe for him still.
It was as if he wanted to climb back in the womb and start over, since the very beginning. He was mad with colic, the kind that lasted nearly a year, and we just couldn’t blame him. Every little and not-so-little thing just seemed extra difficult for him. Reflux, a digestive system that just didn’t work right, a botched circumcision…you name it.
Everything that could go wrong, seemed to do exactly that.
So when I take Asher to appointments, I’m always a bit prepared for the not-so-good news. Yesterday this meant that I sat with an eye doctor while she tried to help me understand that his eyes don’t work very well. She used a lot of big words that I couldn’t focus on because my two boys were throwing raisins around the room and grabbing the doctor’s um…chest. I took in what I could, wrote down the big words, and came home to call one of my closest friends who happens to be an eye doctor. She spoke English instead of Doctorese and I mostly understood.
In short, Asher needs glasses now so his right eye won’t stop working completely. Basically, it’s not really doing much, so the risk is that his brain will tell it to stop working. It needs exercise. He needs glasses (which will be the cutest thing I’ve ever seen in my whole life, I’m pretty sure.) He has some other issues with eyesight, including severe astigmatism and something else I don’t really understand yet, to be honest.
And so we’ll help. We’ll get him his glasses. It could be so much worse. I’m so glad we know so early, just like we knew just early enough about his hydrocephalus, before any permanent damage was done with all that pressure on his brain.
I guess I’ll probably never, as his mother, understand why he seems to always get the short end of the stick. It seems like it’s just like that for some people, and sometimes it makes me angry and other times just sad. But the thing is, he’s the happiest little person you’ll ever meet, so mostly I just feel a peace under all the negative emotions that I’m supposed to feel.
Everything big and small that he goes through is shaping him to be the very best version of himself. He’s always had an old soul look in his not-so-perfect eyes, andI gotta tell you, I’m looking forward to being a witness to how his wisdom and resilience will play out in his life.
He’s absolutely perfect just as he is.
This post is a part of Bridget Chumbley’s Trust and The 12 Days of Libbie at Vanderbilt’s Wife
{ 64 comments }
As the father of a daughter who's suffered from diabetes since the age of four, I know the pain of your child suffering all too well. But I've also found that there is a joy and a love of life present in her that's missing from other children her age. Which only proves to me that suffering has a larger purpose. The more it carves into us, the more joy we can hold.
I love your words, Heather.
Billy,
I love YOUR words…
"But I've also found that there is a joy and a love of life present in her that's missing from other children her age. Which only proves to me that suffering has a larger purpose. The more it carves into us, the more joy we can hold."
YES. THAT.
Hey Mama. Just wanted to tell you how much I admire the peace and perspective that seeps out of you here. Squeeze those little cheeks for me, because he sure is a cutie pie.
There is so much love here. From you, from him. Also, little kids in glasses is one of the cutest things ever.
I so agree with C. Kids in glasses are just completely adorable!
I love kids in glasses. Seriously that whole Jerry Mcguire movie did it for me.
It is hard, especially when you love them so much. I find myself just wishing they'd get a break already, theyre just small innocent souls.
Noah has worn glasses since he was 2. He's 8 now and really doesn't mind and has the best attitude about it- he really has had the best attitude about everything that has ever had to be done to him. Which still breaks my heart, even more.
Steph
Lovely post. What a sweetie! I'd love if you'd link it up to my 12 Days of Libbie carnival if you have a minute and do that sort of thing. :) I'm celebrating kids over there this week!
Asher will be the better for it, and have an ability to bless others' lives because of his own hardships. But he is so delightful! And he will be adorable in glasses. Especially the goggle ones. :)
There is no such thing as "the short end of the stick"
You will see his blessings when you look for them. In fact, I can tell you already do.
Heather- my wife and I adopted two beautiful kids whose bodies had been exposed to great amounts of drugs and alcohol in the womb. It's been an interesting fight and struggle, but like you say, we know the joy too. It doesn't always make sense, but we've seen our little girl, who experts didn't have much hope for, thrive and flourish. We've been prepared for anything and amazed at the results. All that to say, I know a little of what you're talking about… :) Thanks for sharing.
Ez is the same way, he is so happy despite all he has been through (minus the roid rage) it really makes you appreciate the simplicity of life when you can look at through their eyes. Best of luck with the glasses! And he will look adorable!
It is hard to watch our children suffer. Life is hard for Asher, but think of the amazing compassion and empathy he will have for others because of it. He probably doesn't even realize that his life is difficult, it is just his life.
And you're right…he will look DARLING in glasses.
You are amazing, it must be so hard to not be able to make all the ouchies go away. But I like to think he is just getting all the issues out of the way now so when he grows up he will appreciate life so much more because he had to take a bumpier road.
He's a lucky little boy to have such a caring mother!
I love Billy's line: The more [suffering] carves into us, the more joy we can hold.
That's exactly what you are saying in this post, Heather. Asher is a delight, maybe because he's endured so much. And you delight in him because you've walked the path at his side.
He'll look ADORABLE in glasses, by the way. I'm sure you'll post pictures, right?
Yes, enjoying your blog very much! I love the grace and ease with which you write about Asher and his condition. I've never blogged much about my Henry's hydrocephalus, although I did post recently about his three day stay in the PICU due to a strong seizure – wasn't easy. And on that note my Henry does not have glasses, but two of his three siblings do, so there is still hope! Thanks for your words.
Be Well!
Why IS it that everything seems to happen to the same people? And these people always seem to be the cheerful, resilient ones?
Hmmmm. There may be something to that.
He will, no doubt, be the cutest Noggin in the whole wide world. Glasses on a baby are just ADORABLE. Betcha any money his brother will want some too.
Tiny little kids with glasses are really the cutest thing ever. I know it is a bummer but already super adorable Asher is going to be really super adorable Asher with glasses.
I think I had a similiar eye problem when I was a kid. The muscles in one eye were weak and they feared I might loose sight in it completely. I wore special glasses for 2 years to correct the problem. Now I don't even need glasses at all.
Your Asher and my Rachel's Seth are so much alike with their medical situations! You guys have twin babies! But both are happy and thriving and that makes me happy! :)
Your post is a blessing to me today. I have wondered during this year, a year of many medical downs for our family, about the twists and turns that these happenings took to land in our laps. But thankfully, caring for our children does not leave too much time to dwell on those questions. And what spare time we do have is devoted to seeing the beauty in our perfectly imperfect children. I don't know why one daughter was diagnosed with epilepsy this year and why the other one is having her second heart surgery next week. But I do know there are gifts in these situations, like your adorable little boy in his glasses, and those are worth it all.
Amazing post and commentary alike. God bless Billy for the most perfect response ever written. It is so true that these children (my son included) seem to be overflowing with an abundance of joy, love and exuberance, touching all who know them in a very special way.
He will be absolutely the cutest little boy with glasses EVER! Big hug.
I am sure just like everything else in his life he will take this with stride and handle it very well.
Asher is going to be ADORABLE in his glasses. I had to wear bi-focals in elem school- how cool is that?!
The photos with the glasses are darling…I think little man is going to look extra precious with a nice pair of his own. :)
Your positive attitude and love for your son is touching…and very refreshing.
God really loves Asher that he helps you guys find this stuff all in time. And I agree, kids is glasses are awesome. I bet he'll be so excited when he sees the world the way his eyes were meant to.
Dear Heather,
Asher is just the cutest in those photos. he willlook adorable in glasses. I have no idea why some kids get the short straw but i know that they will definitely be rewarded in heaven. Those that pull the long straws have to work harder at being "good" to get their rewards ;o)
xx
Oh, honey, you and Asher have been through so much – I totally get the feeling of 'unfairness'! I am just sitting here praying for you & your little boy.
Everything feels possible through your eyes, Heather. As a mom, I feel like I can face anything when most of the time I run around in worry over what might happen.
And then I see how you handle everything with grace, love, and acceptance. You find peace and then I find it too. Your soul is a compass, Heather. Don't ever stop being a northern star.
I'm so glad Asher is doing okay. Glasses, while of the devil (I speak from experience) aren't the worst thing. Mine have almost erased my astigmatism (amazing!) and I like to think of them as jewelry for my face. Something new to change things up.
Wow. I hope things go well with his eyes. He's so darling.
I'm just crying here. It's all good.
I don't look at it as Asher getting the short end of the stick. He's a special child. He will show you someday soon. Look how much JOY he's given you. And seriously. Glasses? I might die from the cutness that he will be!
You hang in there, little mamma. We're all watching you with hopeful hearts, as always.
Oh, and he is a doll!
It's true. "short end of the stick," not really a good choice of words. I guess it just feels like that sometimes.
He's gotten the very long end in many things, even his noggin trials and everything else that could be seen as negative.
He's just plain lovely all around, that boy.
Heather –
J has battled stuff since birth too (she's 3 now), and I'm always amazed that every little thing seems harder for ME than her. She is SO full of joy, love and empathy, and I have to wonder how much of that comes from her experiences. Maybe if her health was different, SHE would be different.
I can honestly tell you that I know how hard it is for the mama, though. If you ever need an ear or a shoulder, I'm just an email or tweet away!
P.S. He'll look ADORABLE in glasses, and, you might want to check out @amomtwoboys blog: (http://amomtwoboys.com) and/or talk to her. Her little boy has gone through eye issues, including surgery and glasses.
Heather, this is such a wonderfully written post.
Your little guy is precious!
BTW… I can't think of a better example of 'Trust' than this… you should post it on the blog carnival!
Thank you so much Psych Mamma, I've always thought the world of you. And amomtwoboys did offer advice/help via Twitter. I love the support and encouragement to be found here. Love it. Thank you.
I have a baby son who is 11 months old, and who has a medical history longer than the rest of my family's put together. He had major skull surgery at 5 months old (I can so relate to the surgery drama!) and then spent a week in the PICU with complications. The surgery was a failure, so we'll be facing another major surgery sometime after the first of the year. We once made the rounds of three hospitals, two ER's and an ambulance in one day. You know you've spent too much time int he children's hospital when you're in the ER and know the names of the attending physicians!
But despite all of that, my son sounds much like yours. he is a happy, peaceful soul. There have been many times where I have ached for all that my poor son has had to endure, and all the hurdles that are undoubtedly ahead of him. But looking at all of his struggles, I can't wait to see what kind of a man he is going to grow up to be, because I have a feeling that kids like my boy and your boy have special missions ahead of them.
I am glad that he is happy, and that his problems have been correctable.
I understand how you feel I think. Henry is my child with the struggle. And Henry is the happiest boy I know. He is so wonderful, just as he is. (though he is sometimes too loud!) I wonder if he would be the same way, if he didn't have the challenges he had. That probably sounds wierd. But I do wonder.
Asher is going to look incredibly darling in those glasses, let me tell you. And I think Billy's words up there are right on. Suffering does have a bigger purpose.
Anything I can say will sound redundant and most likely insincere-so I will just say that I relate to an extent, and think he will be adorable. more adorable.
Glasses – a way for your little Asher to see more clearly as he seeks to learn and grow. What an adorable boy you have there. I just want to hug him. He is perfect.
:0) I remember that appointment well!
I'm here to give you any support/advice/hand holding you need! It IS a minor thing, in the grand scheme of things, but I totally get how it's also NOT.
I have ideas/suggestions on glasses! Feel free to get in touch! meghanATamomtwoboysDOTcom
xoxo
Meg
Sometimes I think that we are born with the ability to accept the little bumps in the road, and then somewhere along the line we learn to let them get us down. But being surrounded by positive, encouraging role models can often delay that disappointment or even stave it off altogether. So yes, Asher is a fortunate little guy.
Hi…I just hopped over from the blog carnival and I loved your post today. I have two daughters and my youngest is now 19. She will sometimes laugh and ask why did she get all the bad genes? She has the bad eyes, the bad teeth, the bad back (scoliosis)…she wore a back brace 23 hours a day from the time she was 12 until approximately 16. And she amazes me. So funny and so very full of life and just takes what comes her way with a wonderful spirit. And people love her when they meet her. God has taught me so much through this girl. Your little one is adorable -glasses will only make him more irresistable…wishing you lots of good health as he grows!
What a beautiful, humble, honest post. I can tell by your words – your gorgeous, but unfluffed words – that you are madly in love with this little guy and that you have immense confidence in him and his future. What a lucky little lad to have such a nuanced, appreciative, intelligently loving mother. And, yes, he will be the cutest with those little glasses. No doubt.
You two were meant for each other. He is lucky to have you for a mama and vice versa. Oh gosh, he is too cute in the glasses.
:)
TEARS running down my face! I love your Asher! I just know that he will persevere through all of these trials and come out smiling on the other side!
Asher sounds like such an amazing little boy :) I'm so glad you can look at that fact, and be at peace with the rest (or as much as you could be, I can't even imagine).
Just an amazingly humble post. I'm going to have to stop reading them though (kidding!) otherwise I'll go broke on tissues…
I'm glad that he has that spirit and take it in stride attitude! He's a gift, that little one. He most definitely is a gift.
He sounds like an amazing happy little boy. Reminds me of my friends son, and the stuggles he goes through just blow my mind – and she has to stand by and go through and learn every new illness and understand it all… but he represents pure joy to me.
You are a fantastic mom.
Beautiful Post Heather. :)
What Billy said. Oh yes, exactly what Billy said.
And I'm so glad you have a friend who's an eye doctor! I was going to offer Neil's services in answering questions because it helps SO much to talk with someone who has the knack of explaining things!
my brain is very tired, so even though i can't say it prettily, i love this. i love how his joyful self shines through his pictures and your words. i love the optimistic tone that embraces right where he is & makes the most of it. which sounds like an awful lot of good in one little boy. =)
you are my kinda mama.
ps–just bought clayton this shirt. they can be BFFs now. =)
Heather, I love your Asher. It's totally irrational, but there it is nonetheless.
His outlook must come from you. I admire your courage and willingness to see the good in otherwise not so good situations. He is going to be PRECIOUS in glasses. Just precious.
Of COURSE he's going to be adorable in those glasses! But what I see here in abundance is a gift, pure gift…joy. I think that's how God sometimes compensates for the hard stuff.
My little sister is one who also seemed to get the short end of the stick, from day one. She suffered an intrauterine stroke, damaging her left brain. The right side of her body was partially paralyzed, she walked with a limp, she couldn't use her right hand, she had some learning disabilities…and she wore glasses. But like Asher, she had the gift of joy. She still does. If you met her you would never know she had any disabilities. At all. She compensates so beautifully. And her life just brims over with joy because that is in her nature. She is still the one we all flock to, the one we love to be around, because that joy is infectious.
I'm so grateful that Asher has that gift. And that he shares it with you.
It is so hard not being able to JUST MAKE IT ALL BETTER so they are not hurting.
But then we can't and they surprise us with their joy.
It's almost a holy surprise.
Wow what a story!!! I am sorry and happy for you, because your right he will bring so much to your lives!!!
Asher is going to be so cute in the glasses! You have such a way with words, Heather. Thank you for sharing.
Asher is going to be the cutest little bug ever with glasses! I'm so glad that he's doing so well :)
It's such a blessing that you keep discovering the problems when you do–and that you've been able to keep that underlying peace through it all. Asher was sent to you as a mom for a reason. He needs you.
Hopefully this will be the LAST challenge. But you're right – glasses will be adorable.
That boy of yours. I feel for you Heather and all that YOU have had to endure….the worry of a mama. Nothing worse.
But all of what you describe to us is Asher's journey and he is who he is because of everything he is and has gone through and will endure. And I know you wouldn't change a thing. Who would with that smile on that precious face? He is edible.
And you? Are. awesome.
The youngest son of a friend of mine got glasses at that age and he was so so cute with them! He was the only one to wear glasses in the family so when I went to visit wearing mine, he attached himself to me. So sweet.
My point is, he'll get used to them. And he'll be so stinkin' cute! Not that he isn't already. YOu know what I mean. I hope.
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