It wasn't until I heard other people say that my son was a boy with "special needs," that I even considered this idea.
I thought of Asher's situation as something that happened, and then was "fixed." Maybe I even thought that his shunt surgery saved him from having special needs at all. Because it did, for the most part. His hydrocephalus was caught at exactly the right time to prevent brain damage that would have effected his daily life more drastically.
I wasn't offended, hearing people describe Asher as a child with special needs, that's not what I'm saying. I don't think that's offensive, since at some level, we all have special needs. Actually, it's a little silly, but I was simply surprised, thinking "Oh yeah, I suppose he does have special needs."
Then recently, from an adult with hydrocephalus, I learned that "having hydrocephalus is like having a hang-over every day."
Asher's most important need is for me to connect with him, becoming more and more aware of what he needs on a daily basis. To watch for signs that he's hurting and help ease the pain. To remove him from situations that are just loud enough that he covers his ears and cries. To make sure he gets enough rest. To take him to the doctor any time there's a question, even the slightest chance that something might be wrong.
It's funny how quickly something "special" becomes your "normal" when you love someone just as they are.
I had the honor of sitting with MckMama and Stellan a couple of weeks ago. It was an experience that has been heavy on my mind, thinking of Stellan's little heart and the heart of his loving Mama. I sat there, hearing the beeps, watching the heart monitor, seeing the face of this sleeping miracle baby. I was struck by the miraculous peace on both of their faces despite the daily struggle and road ahead. It's not that pain and fear were absent, it's that this baby and his family are covered by their faith, the belief that Stellan will live, and the thoughts and prayers of hundreds of thousands of loving people.
If I didn't believe in God before, this experience would have had me questioning my disbelief. Because the spirit of that hospital room was thick with comfort and peace. Even there. Even then. In the midst of a terrifying battle for life. Even then. I felt like I could reach out and scoop up that faith, put it in my pocket, and then pull it out when I have a special need.
Because that's what faith is about. It's believing that there's Someone out there that watches us closely, trying hard to connect, and is aware of us on a daily basis. A Father who watches for our hurting and does all He can to ease the pain. One that loves us just as we are.
MckMama and I ended up talking for quite some time about all kinds of things. And this lovely lady, one mothering her sick baby boy so beautifully, took the time to ask me all about Asher. In detail. She wanted to know all about hydrocephalus, how the brain shunt works, where it drains, will he always have it, etc. Then she said something that struck me in a new way. She talked about how we have these medical options, things doctors can do to "fix" our children, and talking about it becomes so normal. But every once and awhile, we have to stop and say, "But it's his brain!...or, it's his heart!" She's right, it's mind blowing, really.
I don't think I can describe how thankful I am for our new normal. Asher had a need that was so special, it required brain surgery, a valve and tubing placed inside his little body...and it's all second nature to his surgeon. Amazing. A miracle.
And now I've been praying for the details of Stellan's much more precarious case. I've been believing that each new approach to saving him is being attempted at just the right time. Because even when it makes no sense to us, I believe things are falling together in the most miraculous possible way. No matter what happens, that's true.
Please send your thoughts and prayers to Stellan in Boston. The current plan is for surgery tomorrow. And that sweet Mama, who took the time to ask about Asher in the midst of her own struggle, needs our prayers for peace too. She has a special need.
(To read more about Stellan and his family, visit My Charming Kids.)
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I am glad you were able to provide comfort to her. I am praying for both of you!
I love your insight and thoughts. I really feel like I know you. You are such an amazing person. You and your friend are in my thoughts and prayers.
That's a very compelling way of looking at things--we all have special needs. True, true.
Praying for Stellan and J often!
We really do all have special needs, don't we? Some of them are more noticeable, some are a little more risky, but they're there. Best wishes for Stellan and his family!!
What an AMAZING post Heather!! You are an amazing woman and you will all be in my thoughts and prayers!!
I will be praying for them!
And I know what you mean about the special just becoming normal. I feel that way with my brother. I know that the world sees him as special... but I guess it's normal to me.
I often think that maybe I am the one with "special" needs. :)
Sweet post. Always making us think. They all do have special needs, don't they? Some big, some small, some fixed inside the home, some not.....it sounds as if you helped bring some of that peace to that room. Having friends around can always save some sanity. Happy Monday.
Wonderful, wonderful post.
I know people mean it as a compliment when they speak it, and I receive the sentiment appreciatively, but it always makes me internally smile when I hear the comment "I couldn't do it" in regards to juggling my Youngest's PKU disorder.
As if I (we) had a choice in all this! And yes, you could do it. And you. And you. And you. Why?
So simple.
It's your child. What's the option besides taking it, embracing it, fixing it as best you can, and moving on?
Keeping Stellan and family close in my prayers. E
(adorable shot of Asher, btw!)
How great to be able to see Stellan and talk with his wonderful mama!
Very well said Heather. K has had eight surgeries - three involving his brain. It can be a scary thing - but so SO miraculous!!
While she's not my "special needs child," my daughter was in the NICU for several days after birth due to an air leak around one of her lungs. And the fact that treatment was so routine, had me feeling very confident and not in the least bit worried about a full recovery. But you're right - those are her lungs. She needs them to breath. And there is nothing less than miraculous about the fact that it just took a few days to "fix" them.
"I wasn't offended, hearing people describe Asher as a child with special needs, that's not what I'm saying. I don't think that's offensive, since at some level, we all have special needs. Actually, it's a little silly, but I was simply surprised, thinking "Oh yeah, I suppose he does have special needs.'"
This part really spoke to me, because it is so true. I especially see this in my son who has dyslexia, but I also see it in my other children. My daughter has trouble relating socially. My eldest son keeps all his feelings locked inside himself. My youngest son is very complacent most of the time, but can be a little time bomb waiting to explode at other times. We all have special needs. The important thing is, are we as mothers, willing to take the time to meet each of the needs are children have. Sometimes is can be overwhelming. Guess thats where God's grace comes in!
I love a thick spirit, and I love your optimism and thought processes. YOU are special, so why wouldn't your children be?
Oh, you sweet, sweet, special lady. How beautiful you are.
Asher is so blessed to have you - and you to have him. Plus, those other two guys you all hang around with too:)
You are so right about what we get used to and what becomes our own "normal". It's amazing to think of all the different places we all come from - and they are all normal to us. I'm so happy Asher is doing so well. I've never heard that about the hangover feeling. And what a gift you were able to give to MckMama to let her focus on someone else's child for a short while.
I will be praying for them - as I have throughout this ordeal. Her faith and her calmness really do shine through.
You've moved me to tears again, hun. You might not always feel it, but you are amazing. Special.
I love how you describe "the honor of sitting with MckMama and Stellan." If only we all saw sharing time together as an honor. Thanks for helping me think about this.
This is a wonderful post ! Thank you so much! As a mom with a special needs child, I have found that it is incredibly easy to underestimate the stress you are under. Like you said, the special becomes normal, the burden becomes adjusted to, and we just forget that the things we are dealing with are hard. Then we wonder why the heck we are so stressed and tired!? Why we are impatient and exasperated!? We do ourselves a disservice by forgetting, yet we can't live in that lane every minute of the day. It's way hard. Hugs!
Poor Asher, a hangover every day is what the person said? :( I want to squish him up, the cutie. Special needs is all interpretive anymore.
MckMama has been on my mind for so long, it seems. And every time she posts a picture of Stellan, I cry like a huge baby.
See? I'm not even looking at him, and I'm crying. Sheesh.
I can't even begin to imagine watching my child struggle and sometimes suffer daily. You have been given extra measures of grace as so evident by this post.
Praying and crying for Stellan. And for you and Asher. Iron shoes, friend, iron shoes.
Both you AND MckMama are amazing people.
And both Stellan and Asher (and Miles) are amazing kids!
I think what you said about how "special" becomes "normal" when you love someone. You just deal with it. You do it because you love them and that's what needs to be done. I had this situation in reverse when it was parents who developed special needs, but it didn't seem a hardship to up-end my life and take care of it.
Great post.
I'm so glad you posted this. I was thinking about Stellan and his family just this morning, wondering how it was going. Worried that things were not going well. I really hope this heart procedure helps him. My son had SVT as a preemie infant and it terrified me. His boughts were stopable but the fear that came in those few minutes- I have so much empathy for Stellan's family having had just a tiny taste of that same worry myself.
I'm glad that Asher's condition has stabilized to the point where it just all feels normal and okay.
Excellent writing and excellent blog. I needed your thoughts on faith today...thank you.
Now that I don't NEED a minivan, I kinda miss it. They really are practical!
this a beautiful post. my thoughts are with this family.
this was such a sweet post. and you're right, what is a special need? one of my sons has a hole in his heart, but has I see him growing up, playing sports, etc I don't see him as having special needs...it is normal to me....and it is okay!
Great post, friend!
I had a brush with special needs when Rose was born...by the Grace of God, she recovered from her traumatic birth. But going through that horrendous experience gives me so much respect for mothers who deal with such major issues long term.
I have been praying for both of you!
my thoughts are with baby stellan. you're a good friend, little mama.
i think you are on the verge of figuring this whole motherhood thing out. you're such a special, thoughtful person!
Wow, I can't imagine dealing with things like that. I have had healthy kids and not been faced with those challenges - but I will keep you both in my prayers. That was a lovely post.
I love your posts. You have the most beautiful heart and your blog always makes my troubles seem so small. It helps me to think of others--I'm so grateful for that.
You have an enormous and beautiful heart.
I'll never forget how VINDICATING it was the moment I realized that ALL THREE of our children have special needs. Needs no one else sees. No wonder this is HARD, I remember thinking...and then the floodgates opened.
Your descriptions of faith here are so real, so accurate...so perfect.
So True! It is amazing how those "special needs" become something we don't even think about being an "extra" or a "burden" or etc... if it's someone we love - it truly does just become "normal"
I was so going to write something but it turned way too huge so I will blog it instead. But really, is there such thing as abnormal? Because what's normal to one is not to another so either, we're all normal, or we're all abnormal.
Yeah, that's pretty much all I can think about when I'm praying for Stellan - 'but, it's his little tiny heart!!!' and I can't imagine that being my daily reality in parenting. Thank you for this post - so sweet & so eye-opening.
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