I have to admit something.
I don't really know very much about shunts.
This contraption is IN MY CHILD'S BRAIN, and I don't really know much about it at all.
I know that we have the very best pediatric neurosurgeon, and I know that he puts me at ease every time we see him. I know that the shunt is a valve, opening and closing depending on the amount of fluid in Asher's brain. And I know the shunt can malfunction for a number of reasons, but I don't really know what all of them are.
I've never googled "shunt malfunction."
I was too scared.
I've been pretending that ever since Asher had surgery, he's...well... fixed. Or at least a part of me is pretending that. Of course, when he vomits or seems exceptionally tired I think about a malfunction, but that doesn't happen very often.
For the most part, I try not to think about any of it at all.
I only know the basics, which I shared here. So when I sat across the table from a friend last week (one who knows full well what it's like to have a baby with medical issues) and she asked the very best questions, I couldn't answer most of them. I sat there feeling a bit silly for not knowing the answers. Of course, that wasn't her intention, it just happened and it got me thinking some ugly thoughts at first...
...What kind of mother doesn't know the answer to these questions? Why wouldn't I have educated myself as entirely as humanly possible? What's wrong with me?...
But on the way home and over dinner with another friend the next night (yes, I was very social last week), I realized that I've been going through my own personal "stages" this past year.
I figure every mother handles this sort of thing a different way. I've simply passed through some stages of denial and fear, and that's kept me from needing or wanting to know more. Whatever the reason for it, I know all of this not knowing has served a purpose for me. Maybe it has something to do with my sanity because if you don't know, I'm quite easily overwhelmed. I'm a strange dichotomy, all of this angst and peace at exactly the same time, all the time.
The thing is, I don't want to know that some malfunctions are life-threatening. I don't want to know that sometimes the malfunction won't even show up on a cat scan and that means it could get worse with no one knowing. I don't want to hear that having hydrocephalus is painful every day. I don't want to think about what's taken from Asher's quality of life because of this condition.
This is my boy. I want him to wake up in the morning without a headache. I want him to play sports without being scared that something will go terribly wrong. I want him to sit in class one day, thinking about what his teacher is saying and not about the pressure in his head.
I want him to have a brain that works the way that it's supposed to work, without help from a device.
But maybe that's not what I need. Wanting something that doesn't exist is definitely part of denial. I don't think I need that part of denial anymore.
Because part of sitting with this without thinking about it much, just letting it be, has allowed me to fall in love with Asher just exactly as he is without muddying the waters. He is not medical jargon to me. He's simply my Asher.
So I didn't want to know and maybe I still don't. Yeah, maybe there's a part of me that will always hold hands with denial, and I think that's okay. But now, since I'm ready, my other hand is starting to reach out toward acceptance, and it's good.
49 clicked right here to comment:
I am thinking about you today. I hope is doesn't rain thrusday. if it does, maybe we can go swimming at the community center instead. Asher (and Miles too) are so much fun! and I like talking to you to. I think I would be the same way. Sometimes not knowing is what you've gotta do.
P.S. my mom follows your blog now too.
Accepting anything other than what's "normal" can be hard. You have to take baby steps. You are doing what you have to, to make sure he's taken care of and that is the first step/stage. Continue on that path. The rest will come.
As you can imagine, this so spoke to me. I have been the one to dive into all the medical jargon and google-ing...and Mike has been the one to just let it soak a bit. And then, after some time has passed, we sort of switch roles a bit...and hopefully, our girls have been the beneficiaries of this parenting 'style'....I love that you have taken the time to simply love and come to know this little guy. All those pesky medical details can follow. You've put an amazing foundation of love in place--
Hugs and blessings!
what you say is all to true for me as well. the less i know, the less i worry. . .the less i worry, the less i let something other than God consume my mind.
be blessed heather,
amy (honestly)
This was such a good post. You brought out feelings I had some 18 years ago. My son was born with a heart defect, one that would not "heal itself". I am actually so glad that there was really no internet back then b/c I would have been on! and I think I was able to deal with it all much better "not knowing everything". He still has the defect, we actually learned last year (with science getting so much better) that it is worse than originally thought all these years..yet he is healthy and thriving.....that is what I need to know!! Thanks for sharing this!
I am very similar to you in this Heather. - Sometimes we just need to step back and love them for them. Not obsess about shunts and surgeries and brains - just get to know their unique laugh and the way they relate to their world.
I think we know enough. We know when to take them in to get checked out (uh...pretty much whenever they aren't acting right...) :) We know the basics to keep them safe. And I think that is enough.
What sweet pictures of Asher!! Adorable.
Glad you can enjoy Asher as Asher. We all have our own forms of acceptance and coping--if it's working for you, then no worries! Take it as it comes, and in the meantime (and after), love your babies to bits and pieces. They are precious.
I think, no I know, that I would be the same way as you. I wouldn't want to know. It would be too hard for me. I would just want to love them and hug them and hold them and cuddle them.
He is so adorable!!
I think all you can do is just live, and live fully. You can be in denial and you can be in the know... But the important thing is that you are a good mommy to a really awesome little boy. That's pretty darn special thing. :)
Knowledge can be a good thing, but only if you're ready for it. It's good that you understand yourself well enough to know at what pace you can move through these stages and still be all there for Asher.
i have a very dear friend that is an analyzer and a researcher. sometimes i think they (she and her sister) give themselves anxiety attacks from the information overload.
but they are VERY well informed parents. i'm glad you found your balance. peace is priceless.
i don't think it's denial at all! i think it's just living life the way it is now and loving it. loving asher!
(peace and angst at the same time - we really were separated at birth)
I just wanted to say that you're so brave and gracious and kind and he's lucky to have you as his mom. I sometimes think not knowing things is better too...
Ignorance is bliss, but knowledge is power. When you're ready you'll learn more about it and it will change the questions you ask and the details you watch. But no matter what stage you're in, you'll do the right thing... because that's just the kind of mom you are.
Don't you think that sometimes, not knowing all the details of the things you can't control can be its own kind of peace? And knowing that you love your boys is the most important knowing.
I think this is true for many things in many of our lives. Denial, or keeping ourselves away from certain information, is not always a bad coping mechanism. It can actually be quite useful. When it comes to our kids, we should know what we need to, but not necessarily more. Sometimes knowing more is just too much, I think, and can make us crazy.
Btw, I've been reading your words and just never commenting, here or anywhere else. I just wanted you to know I'm still here:)
I too think knowing too much can be overwhelming and kind of unnecessary (at least for most people), but to be honest, there are things I DO need to know that I haven't taken the time to learn. I'm ready to learn those things now though, and that feels good.
All I can say Heather is that I am sure what you have gone through is a process for most Mama's. I am glad to hear that you are ready to move on. That is a blessing from God, ya know! He helps us move on when it is best for us! Just enjoy Asher! He is adorable!
Heather, so much of your blog strikes home with me, every single solitary time I read you. Right down to the 'talk to me Goose' :)
I am definitely one of those moms who allows herself the space to live in a measure of ignorance (rightly or wrongly). But I agree w/ your comment above - there comes a time when you do need to educate yourself so that you can gain a different sort of peace: the kind of peace that comes with knowing that you are prepared & knowledgeable should the worst happen.
I hear ya, and it's totally understandable. Knowing my own freakish control issues, I'd go the other direction and learn way too much and scare myself unnecessarily. But we each do what we have to do to handle the situations we're in and cope with them. You'll find out what you need to as you can. You're a great mom.
Stages, that's the core of it, isn't it? If you'd rushed out and researched the topic like mad that very easily could've pushed you over the brink, and you may not have been able to be the mommy you've been able to bless Asher with. To everything a time and a season, and what a beautiful thing it is to recognize that and live it. I'm glad for you.
The heart, as much as the mind, protects itself from painful things. You didn't run or hide from Asher's medical treatment. You took him to the best possible doc in a 3 state area. But you walled off your mind from unnecessary information that could wound you all. That's not denial my friend, that's fine parenting.
I just told a friend today my favorite quote is, "make time for quiet moments as God whispers and the world is loud." You've been listening to the whispers... and heard just fine. Keep your chin up, those sweet boys of yours are blessed to have you.
Hugs,
C~
You have amazing intuition; you will know when the time is right. You are taking care of your darling boy beautifully. The picture of Asher walking across the red railed bridge is breathtaking. :)
aw hugs!! If I researched everything that could go "wrong" with an adoption or with my kids one day I'd be a mess. Sometimes, you just need to pray for the best.
You know what you're doing, and when or if you want to learn more, you will. I'm sure your intuition, gut feeling, tells you what you need to know for now....
And it's wonderful to have a little guy like Asher to love, just the way he is!
And a very sweet Asher he is. :)
Praying for you, friend. Crying for you, friend. I think preserving yourself and your sons from more mental anguish isn't such a bad part of denial.
I'm sorry you all have to walk through this... you, your hubby, Miles and Asher.
oh my sweet heather. it all comes with time. and as they grow and you have less ability to control their environment and monitor their every move, it does help to learn more and accept reality. i know that sounds hilarious coming from someone who is totally in bed with denial.
you have taken such excellent care of asher thus far, and i have no doubt you will be his biggest and best advocate until he can do it himself. which is another whole stage... passing the responsibility on to him. ugh. no need to turn you into the basket case that is yours truly.
I am just the opposite. I have to know everything. I want to know everything. The good, the bad and the ugly. Then and only then can I begin to cope and understand.
Wow, we have way more in common than I realized at first. I have a child with medical issues, and while I spent the better part of her first year obsessing over them, lately I have let go. Every day she is more Greer and less "that ailment". A little piece of it dies with each new day of her life. Do you feel that way, too?
I think it's a good thing....the way we look at it. Denial, maybe. Faith, surely. Love, absolutely!
I have a little friend with a shunt....she is 9 and has had a rough go of it this year. I am very close to her and her mom. I know how hard it must be, but I'd be happy to hook y'all up. Just let me know.
Sometimes denial and not knowing are so much easier. I totally get that. Take it at your own speed. You're doing great Heather.
You don't WANT to know everything and you don't NEED to know everything. That is why we have doctors. You are doing things the exact way I would.
Oh Heather - I so understand this. I have a stack of books about sensory issues kids sitting next to my bed and I have only managed to read one. And that is probably the most simple issue that Oliver has! It's the one that I can really educate myself about and help him, but I don't like to think about it any more than I already do every day. I want the school and the neurologist and the psychiatrist to just tell me how to fix things these things. I hate research and technical jargon and long medical explanations do not stay in my head longer than five seconds. Maybe we just have to take things one piece at a time. The big picture is just too overwhelming.
By the way - one of my grade school friends went through the exact same thing as Asher and I never knew about it until recently when my Mom mentioned that she almost died as a baby. So he really may be "fixed." His grade school friends will never know that he had a shunt inserted in his brain or that he was ever different in any way....
I understand the not wanting to know. I'm sure I would be the same.
I wonder if you could ask the wonderful doctor to recommend some books or something. I don't think google is a great place to start in your case... Too much fear mongering on the internet and so much of it from unreliable sources.
Your little guy is adorable! What concentration in that first picture(I love how engrossed little kids get when they're enjoying an activity).
Hugs.
When it comes to my medical conditions (yes, I have a few)I read every single thing I can. But if I were the mom? I think I'd be exactly as you are. I understand 100%.
I think there is nothing wrong with not knowing everything. The internet is always full of dangerous maltruths. You need to care for yourself and be able to live without worrying every day.
You are a great mom.
I relate to this in the oddest way that might not make sense to anyone. But in a way this is so similar to what we're going through with our oldest son. This sentence in particular rang true for me: "I've been pretending that ever since Asher had surgery, he's...well... fixed. " I could say with equal candor "I've been pretending that ever since Josh went to the wilderness, he's...well... fixed." I know he's not out of the woods yet, but the fixer and the nurturer in me needs everything to be okay.
I guess what I'm saying is I need room to hope. Even if that seems like burying my head in the sand sometimes. It's that hope that allows me to keep going. To mother.
I have a an adult child with a disability and learned years ago that it creates a cycle of grief that doesn't end. Most of the time I am fine with my daughter and we just do what we need to do each day, but occasionally I realize I'm at a different place in the cycle. I get angry at having to deal with medicaid waiver problems and I can feel a great sense of loss when we hit a milestone in life. A friend's daughter getting engaged or going off to college can remind me that B will not be doing the things she should be. I've just always felt it helped me to acknowledge that at times I would feel different about having a disabled child. I think parents of kids with medical issues like your little guy must go through the same cycle. In other words, it's okay to be exactly where you are at for now.
It's all about the stages...and everyone experiences them at different times, for different durations.
I sometimes tend to do the opposite...I learn way to much. But if I don't, I have nagging questions that only serve to put me in a panic. And so I go on, learning more than I need, and then sitting back on my haunches letting that marinate...letting the unnecessary go to the recesses of my mind.
It is hard to know that your child feels pain. That is one tough reality. It is enough to learn that for a while, let that settle...and then learn some more.
I think, from what I can see here on my screen(!), you are doing an awesome job with that little boy.
P.S. I LOVED this post.
What a beautiful look into what you are feeling Heather! This part really touched me... "how sitting with this without thinking about it much, just letting it be, has allowed me to fall in love with Asher just exactly as he is without muddying the waters. He is not medical jargon to me. He's simply my Asher."
Great post!
Oh Heather. Wonderful post.
It took until about the end of year two with my little PKUer to realize what was happening - I was grieving - grieving the "perfect" child that all the books had promised. Where were the simple worries of sleepless nights and crying jags?
1. shock/denial
2. pain/guilt
3. anger/bargaining
4. depression/reflection and loneliness
5. the upward turn
6. recognition/working through
7. acceptance and hope
I've visited acceptance and hope more often these days - it's a nice place. Sounds like you're well on your way. I'll save you a space.
And seriously - you make some adorable kiddos.
All of us who are visiting Holland or who have visited Holland go through this. (Do you know the Holland story, BTW?) I go through stages of this... because every year I think the Tongginator is all better, but then something crops up and I realize "this will never go away." Lately, I am terrified of kindergarten because I worry her SPD will somehow ruin her school experience.
I agree. There is nothing like having something with your child that you cannot control. Hugs and Prayers.
Lots of warm fuzzies to you!
I think you're right that every mother (or father even) handles these things differently. It just depends on their personality and maybe even your comfort level with all the info. I think I would be apt to be more like you so I was nodding as I was reading this post.
And I just have to say - he's so cute! : )
Sometimes, even for a bit, ignorance is bliss. We do have to wake up and deal with things, but for a time it's okay not to know. And sometimes even when we do know we have to just ignore it. It's too much to try and focus on all the time.
Be well my friend.
I can totally relate to this post. I'm just trying to rest in the knowledge that God knows it all so I don't have to because He'll get me through it. My Annie also has a shunt and this spring had terrible headaches/vomiting. I'm so thankful that it wasn't a malfunction, but it brought the hydrocephalus back to the front burner again. She's done so well, too, that I've wanted to think that she's "fixed." I've learned since her birth and being told that "we've never seen a brain like hers before" that no matter what I'll love that little girl. "Normal" is so overrated anyway!! Thanks for sharing this. It really spoke to me.
Julie
I think I would be like you, like knowing less would make me less scared.
Asher is a gorgeous baby, but I'm sure you know that!:)
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