Sep 16 2008
Crashing
We had another big evaluation for Isaac this week.
Before I get into that, though, I suppose I should explain how outstandingly well he’s been doing lately. This is, perhaps, why you haven’t read about him much here lately. I’ve been so hopeful. He’s started saying words! His walking has improved and he’s even started climbing! He uses a few gestures, he looks me in the eye, he cries when Daddy leaves. These are things we didn’t know if we would ever see him accomplish in his mortal life, and he’s accomplished them right as he was turning 2!
That hateful word, one I can hardly bring myself to type, “normal”, has been tossed around. People say it to me all the time lately. His nursery teacher at church, friends and neighbors, even family members. When my sister and her husband (who is a psychologist, so “he should know”) were in town a few weeks back, they told me that Isaac seems normal.
And when people say this to me, it makes me furious.
That probably doesn’t make any sense to you, Gentle Readers. It has taken me a very long time to figure this out for myself. I’ve come up with three reasons for why this makes me so mad.
1. Saying that he’s “normal” means that they aren’t paying very much attention to him. I feel like I have to prove them wrong. “He’s normal” is my cue to give people a list of all the reasons that he’s NOT normal. I hate this. I hate going through the laundry list with people, feeling like I have to convince them that he’s not okay. My motivation is for them to understand him and care enough to get to know him and see that he needs help. But in the end, it sounds like I’m bagging on him or pointing out only his weaknesses. I don’t want to be that person who only talks about the weaknesses!
2. Saying he’s “normal” somehow means that the big deal I’ve made out him being sick, different, NOT normal, etc. is just me being overdramatic. As stupid as it sounds, I need the validation. I need people to understand that, while I love Isaac with all the love a mother can have for her child, this is hard! Them saying that he’s “normal” means that this isn’t hard and that I’m just a big fat whiner. When every moment of my day—and many moments of my night—are occupied with this bizarre illness, this label that has turned our lives up-side-down, this wicked word that describes such a wonderful person, in an attempt to figure it out, to understand it, to help make it better, to find someone to teach me to make it better. I need my loved ones, my family, to understand that— and to be there for me!
3. Number three is the biggest one. The problem with everyone calling him “normal” is that I start to believe it. I know this about myself. I know that I shouldn’t allow myself to believe it. I brace myself against it, but I find myself slipping into that world of hope. Maybe he really is doing better, I think to myself. Maybe he’s starting to be normal.
Number three is so, so awful. Because he ISN’T normal.
I can’t tell you how many times I’ve been through this. I get slammed with the truth and I have to go through the whole grieving process again. It’s a cycle I’m all too familiar with: learning the truth, hurting over the truth, coming to terms with the truth and being okay with it, going into denial about the truth and then CRASH, I learn the truth again.
So, as I was saying, Isaac had an evaluation this week. He had a comparable eval about nine months ago, so I was eager to hear about all the progress he’s made and find out where we go next.
Crash.
No one can deny that Isaac has made a lot of progress. But now that he’s two, the criteria is that much harder. Or, in other words, he’s made progress, but he should have made MORE progress.
He’s still in the first percentile in many areas of his mental development. First percentile, people. There is nothing LOWER than the first percentile.
The crash isn’t disappointment in HIM, and I need to make sure that he and my other children understand that. As far as I’m concerned, Isaac is perfect. (What’s so stinkin’ great about “normal” anyway!) The crash is, instead, anger. At myself. For doing this AGAIN. For putting myself in a position to crash AGAIN. I can’t do this anymore! My heart can’t take it, my spirit can’t take it.
And yet, what is life without hope? Am I to stop hoping things will get easier for him? Stop hoping that he’s making progress? Am I supposed to give up on him?
So, that was his mental/developmental evaluation. Tomorrow he has a physical evaluation— his first since we moved here to Colorado. A week ago, I would have told you that I’m excited for this evaluation. I think he’s finally growing! Surely he’s on the growth chart by now! Surely his “failure to thrive” is all over. Surely!
But now, I’m closing my eyes and betting on the worst. They are going to tell me that he’s further off the growth chart than ever before. They’re going to tell me that he needs to be hospitalized for further testing. They’re going to poke him with thousands of needles (again) and run every possible test on him (again) and then tell me that the tests are all inconclusive (again). THAT’S what’s going to happen tomorrow!
And yet… I don’t REALLY believe that that’s what’s going to happen tomorrow. That’s what I WISH I believed. But, the truth is, I think he’s doing a lot better! Which means that, once again, for the second time in a week, I’m setting myself up to crash.
As I dumped all of this on my dearest Charrette a couple of days ago, she replied, “I think it’s actually a rather optimistic trait…you search so hard to see the good and the progress in this little person you adore…and you cling to that against all odds. An emotional roller coaster, for sure, but it could be your very belief in him that could save him. He is so lucky to have you for a mother.”
Which, of course, made me bawl. Could she be any more wonderful?
So I have to take a step back and look at the big picture. Maybe, as a mom, peace of mind is just one more thing we’re called on to sacrifice. If she’s right— if my belief in him, my hope for him, really could make his life even a tiny bit easier, then I’m willing.
I think.
Am I?
Oh, sure. It’s easy to say that I would sacrifice anything for my child. Money, time, energy, REST— all of that was sacrificed long ago. But am I willing to crash, over and over again? Am I willing to grieve over and over again?
It seems like a LOT to ask! And yet… I’m doing it anyway, so it’s time to come to terms with it.
And so, brick by brick, I’m tearing down this fortress and allowing hope into my heart, when I’d previously tried (unsuccessfully) to barricade it. Removing my worthless armor as I enter the warzone. Hoping I won’t crash, but knowing that I might…
Hang in there! That was a beautiful comment from Charrette
My thoughts are with you.
Cindys last blog post..Second Favorite Holiday
I love that little guy. He is so sweet-natured and adorable.
And I meant every word I said. He IS lucky to have you for a mother. You are one of the most positive, upbeat people I have ever met. You laugh in the face of adversity, tear down walls, draw people in…You’re amazing.
I’m so sorry this is such a tough emotional cycle for you. Most brutal because you’re so heavily invested in him emotionally. Yet there is no power quite so formidable in this world as a mother’s love. And I do think there’s a reason he was sent specifically to you. Your love and your undying optimism could be the one thing that pulls him through.
Do you think we knew we were signing up for sacrifice to this extent when we signed on as mothers? This seems like a whole different form of consecration.
Thanks for quoting me here — I’m honored.
charrettes last blog post..SOS - Miss Havisham’s Honeymoon Haven
Wow. This might be sorta lame, but when I hear about people with such enormous struggles like this, the first thing I usually think is what a strong person they must be.
I’ve had a really relatively easy life, and I truly believe that those who are given more difficult trials have stronger characters. I definitely believe that we are not given anything we can’t handle, so no matter how you respond, this shows that you are a pretty amazing person in the first place. Then, what you do with it takes you just that bit higher.
I really have no words of comfort or advice, but I do wish you the best, as you do/feel/act the best you can for your little guy!
Lisas last blog post..Poland Progresses!!
I am hoping with you!
I am hoping that he has progressed a lot in general even if he remains in the first percentile…
I am hoping this emotional rollercoaster won’t be too hard on you.
I am hoping you never lose your optimism.
goofballs last blog post..Why I don’t like the fall season
I’m hoping for the best along with you.
Summers last blog post..The Responsibility Project
This sis beautifully expressed. I can see it with you, feel it with you and I can (sort of) understand. I am no help but I’m sorry you have to go through this and I hope for the best with you. (But my crash isnt nearly as devastating as yours.)
Alison Wonderlands last blog post..Decision 2008
Oh - this sounds so familiar… Different child - different issues - different journey… But those feelings? Exactly the same. From wanting to hit anyone who tells me he’s “fine,” to wanting to much to believe it.
You are a wonderful, brave person (more than just a mother I mean) and I’m honored to have been allowed to read this.
Kates last blog post..Go Ahead and Skim to the Bottom if You’re Looking for a Point to This
Thank you for sharing this. As his mother, you know what is best for him. And remember to take care of yourself too, especially during the difficult times!
Erins last blog post..Happy 11 Years!
Oh Brill, my heart aches for you!
Just remember that if you stop hoping, then that sweet little boy loses an advocate. Because if there is no hope, then there is no point in trying.
The best thing to do is to not compare to that elusive term “normal”. So much hope can be found in just watching the progress from what used to be. Improvement is still a journey down a road that you and he will travel together for his whole life. Every step down that road binds you closer together as you work to make his life the very best it can be. Its not about making him into the world’s view of normal (I’m not saying you think it is, just that some people only see that aspect of things) but its about giving him the tools, and giving everyone around him the tools to help him have the best life he can have. There is so much joy to be found, even in the heartaches.
Heffalumps last blog post..#4 gets interviewed about mawwaige
Wise, wise words from Charette - what a wonderful friend is right.
I’m in tears here Brillig - I remember how many times you came to my blog last year and before when I was venting about what was going on with my son’s hearing - and here I am returning those virtual Mommy hugs.
What is a mom to do? You keep on keeping on, and you keep fighting to help your kids be the best that they can be…
Annies last blog post..Not Today
I wish we didn’t have to be torn down to be built up new, but that does seem to be the way of it. What an incredible woman you are, sweetie. Charrette’s wisdom really shines through here, and I’m so glad she was there for you to bolster you up like that. What she said is so, so true.
You’re three reasons for hating that word “normal” really resounded with me. I nodded along with everyone, feeling that in your place I’d feel exactly that same.
Despite the crashing, I hope you can cling to hope. I think the hurting must be worth not giving in to despair. ~hugs~
Kimberlys last blog post..Have You Ever…
I’m new around here. Don’t know you well, don’t know Isaac’s story. Already though it doesn’t seem to me that “normal” will ever apply to him no matter where he stands on the charts or how he responds to those around him. “Normal” is a word others use to make themselves feel better maybe? It seems that term is not likely to ever apply to you either. Your strength, outlook and drive to defend and champion his unique cause speaks volumes about you. You area a rare and beautiful mother.
Marges last blog post..But I Always Get Up On This Side Of The Bed
Wow Bril, what a powerfully written post that shows so much of your strength. I can understand, in part, the cycle of hope and the crash. I think it comes to us all in different forms. I have no words of wisdom to offer, just my love and prayers for you, Isaac and the rest of your family.
Maybe true hope is seeing the progress and accepting the reality at the same time.
Eowyns last blog post..A trip to the Philippines
What a beautiful, heart-wrenching, lovely, bittersweet post. You are an amazing writer! Hugs to you for being such a sweet mama bear!
This just sounds so, so hard, but even in your frustration, I hear your strength.
Melanie Js last blog post..I hate WIMPs
It takes a very strong person to support their child through adversity and struggles. And as long as he’s not normal, he qualifies for more help, which can be sort of a blessing in disguise.
Lilacspecss last blog post..“Dip the apple in the brew. Let the Sleeping Death seep through.”
I love how honest you are about why it’s hard to hear “normal.” Makes perfect sense.
I will be hoping too. I really believe that it’s better to hope and grieve again than to be consumed with negative thoughts. Even if negative thoughts are perfectly acceptable and “normal,” they have the ability to change us if left without hope for too long. It does take strength to hope. Especially in the face of such struggle and heartache. Your strength is inspiring.
And yes, Charrette…you really do have to love that woman!
I couldn’t do it.
But I know YOU can…
Charrette took the words right out of my brain. Huge hugs, my darling.
Novembrances last blog post..Can anyone guess which Pink Floyd song is running through my head?
Sweetie, without hoping, where would you be? There will be progress. There will be setbacks. The heart and spirit are amazingly durable. And so are you!!!!
Amber’s Crazy Bloggin’ Canucks last blog post..Gone. All of it gone, gone, gone, gone, gone
I remember asking Jacob why he just didn’t give Julianna a blessing and HEAL her, but then I thought, “What would happen if God just healed everybody?” So much love and learning would be lost. I really feel for you. Thankfully you haven’t sucked this all in to deal with all by yourself. And if you need a night out, I’m usually home and bored, so give me a call!
I sat with my mouth open as I read about the struggles you, Isaac and your family are facing (again). “Outstandingly well”, “saying words”, “walking” and “climbing”. I hope you can focus on those accomplishments as you hold him tight and let him hold you. Positive thoughts produce positive results. The Hughes family sends our love and prayers.
Tricias last blog post..LINCOLN
Oh what Charette said is so perfect. Hang in there honey. I think we get so obsessed with the idea of ‘normal’ that we’re scared of anything different. I hope all goes well wit the physical tests, but whatever happens he will still be your gorgeous boy. Hugs.
Jo Beaufoixs last blog post..When I was 23…
Oh, Brillig, HUGE hugs. Autism is a continuum, as you well know. Isaac will be who Isaac will be, and as you said, Isaac is perfect just as he is in his own Isaac way. And that attitude will help Isaac to get as far as he’s meant to and can. He has such love and such a fighter in you and that will give him better odds no matter what. All I can say to you is that if you knew the odds C faced when he was 4/5 and see who he is today, you’d know that there may be crash after crash, but there’s hope out there, too. We all need it as parents.
I hope that the evaluation today goes smoothly and as painlessly as possible for your little guy AND for you.
Jen of a2eatwrites last blog post..What’s Cooking Wednesday: Healthy Comfort Food: "Fried" Chicken, "Fries," and Greens
Wow what a post!! First let me start by thanking you..I have changed my mind and have started to blog again, at least in part, because of the email you sent me…thanks again it meant alot.
As for this post, please know that as always, I am praying for you and your baby. Although I know it isn’t as severe, my gremlins learning disability has given me much of the same hopes and “crashes”..
They both have it but #2’s is very severe (currently in grade 9 and reading at a grade 2-3 level)….the older he gets the further behind he gets and the more I worry about the future and what kind of life he will have…and over the years, everytime I have allowed myself to have hope…something has always happened to remind me of the struggles he will always face.
Of course, I would never compare this to your issues…the one thing I will say is this…after dealing with this for 13 years now…I have come to a place where I expect the crashes but enjoy the little victories when they come along…it is surely a hard and emotional roller coaster…but it is the only thing I can do to keep going…
Hang in there…I am reminded of something a very special friend has said to me from time to time when a “crash” has me discouraged…and I will pass it along to you… I firmly believe that it is true that God knew what HE was doing when He gave you this special boy…others would not be able to handle everything that has come your way, but you are a remarkable and strong woman…God knew that your boy needed you to love him when others might not have…
hang in there and remember you are loved…I will continue to pray for you (and sorry this comment was a mini-novel..lol)
Canadian flakes last blog post..ELECTION DEBATE OR DEBACLE??
Hope is one of those things that we need to have to survive. It’s good that you have it, but it’s also good that you can recognize it for what it is… not concrete, not an absolute, but an overwhelming desire for things to be better than they are. And that’s okay. That’s what gets us through the day, what keeps us going. One of my favorite quotes is from Winston Churchill, “If you’re going through hell, keep going.”
If you’re seeing progress, no matter how little, cling to it. Even if the doctors don’t see it, you do and your friends and family do. He may not be on the medical charts, but he’s on your charts and that’s the chart that’s important. Keep it up, take comfort in the progress and keep loving that boy. You are doing a good job.
*hugs*
VirtualSprites last blog post..vegetable insanity
I totally agree with Charette and I would add to it, don’t let what the evals say take away from his progress! It’s wonderful and beautiful. It IS progress. Accept he’s going to be behind for his age. Focus on what’s going right-he is developing albeit in his own way and pace.
On the one hand, I understand on a smaller scale the hope and crash thing and the denial: all is well, wait, maybe not AND the same frustration with people who think I’m just weird and want my kids to be “abnormal” (whatever that is). I mostly just let people think what they want, as long as I can enlist cooperation in the people who’s help I need, I flipping don’t care (OMG how UTAHN was that sentence?) Bottom line? Never stop celebrating his every small step of growth and leading the way to more growth. Your faith in him and your hope for the best life possible for him, the way he is (perfect), will make it so much better for him.
Shellies last blog post..Food 4 Thought…
It took me awhile to figure out what to say to you. I was not going to comment for fear of saying something so inadequate it just comes out wrong. And yet the sheer honesty of this post has touched me. All your struggles and sacrifice, it’s hard for me to completely comprehend as much as I try to imagine what it must be like for you and your child. A mother’s heart can sure break in so many different ways. We all have hidden sorrows. Years ago I lost a son, almost 3 yrs old, and doctors had no explanation. It’s a different sorrow. I can’t compare to your struggle and pain. But just know I understand your mother’s heart even if I don’t totally comprehend what it’s like to be in your shoes.
GrumpyAngels last blog post..Drop And Hold
My heart is with you.
Karlenes last blog post..The Santa Letters by Stacy Gooch-Anderson
Yeah, and who defines “normal”. If you can see him making progress…
Whatever you do, don’t give up on him. I’m sure your mother’s love will do more for him in his life than anything else. No matter if the world thinks he’s “normal” or not.
Kristas last blog post..The Political Post on My Non-Political Blog
I understand this crash, Brillig. Probably not to the same extent as my LMNOB is “high-functioning,” but we are finally seeing enough progress that the OT is slowing down how frequently we see her and last Wednesday? Big crash. Huge. Giant meltdown in Wal-mart that made me realize that we are not normal either, despite how high-functioning she is.
(hugs)
ramblin’ reds last blog post..Non-Ode to Teacher
Boy I’m down there. It’s made me lose my train of thought.
I’m curious: apart from Brillig, does anyone ever read the 32nd comment? Now that I’m thinking about it, I wonder how your chance of having your comment read by a non-Brillig decreases per comment already posted. Maybe you start at like 90% (because some people probably never look). And then how soon before only 50% of the passers by read what was written? 20 comments? 10? 5? I wonder what the curve is. Surely by 32…I’m getting as much circulation as the Enron corporate newsletter.
Unless you write something nasty in caps so that the person writing their comments is like “what the!”
KINKY SECKS! Or something like that.
But that will only work on the next commentor or two. After that, your sensationalism is for naught.
This is the first post of yours that I’ve ever read, so I don’t know the full story…but your post was very moving.
I wish you and Isaac all the best.
Bryan - lol - I read all of your irrelevant, 32nd comment.
ramblin’ reds last blog post..Non-Ode to Teacher
Gnarly! It worked!
If you crash, I’ll be one of the many to catch you when you fall. That’s not a lot, I guess, but that’s what I have to offer
You are the BEST mother that child could have. Loved this post.
Half-Past Kissin’ Times last blog post..Here’s a Tip
Oh, I wish I knew what to say to add to what everyone else has said. I must echo everyone else in saying that he is SO lucky to have you.
Kids with special needs can be so, so heartbreaking. What a roller-coaster.
Hoping for good news and knowing you will keep pushing on and be okay no matter what the news is. You’re just wonderful that way.
Heathers last blog post..Very First Day of School
I love your honesty. Especially about your grief process.
My friend’s daughter was diagnosed and she told me that she is learning to love her “new normal.”
Praying God comforts your soul today.
Carlas last blog post..Drenched
Thinking of you…….
Bad Mommas last blog post..Wordless Wednesday - "OUCH!"
So…I hope your silence here on your beloved blog isn’t a sign that you’re crashing once again….
xo
charrettes last blog post..And Baby Makes…Four?!
Lovely post…must say you are one of the best writers around.
see you and thanks for sharing.
Late as usual.
But I just had to say - I hope someday you’re able to find a place where the hope can exist despite what’s being presented to you - where the hope doesn’t have to crash despite what his current evaluation says. I know it’s so much to ask of you after you’ve held yourself up through all of this. But it shouldn’t be something that’s only there when people aren’t trying to shove their version of “reality” down your throat. You see that boy every day - YOU are the one who sees how far he has really come. And you should certainly celebrate all the progress he makes - even if it isn’t “enough” by their standards. Follow Isaac’s standards instead and there shouldn’t be any more disappointments like that.
I’m not trying to sound preachy - if I do. I just hope that you find a way to cling to that hope and that faith despite what’s thrown at you - so that instead of crashing, you can keep pulling forward. Much love to you and the family, brillypoo. I miss you!
Butrfly Gardens last blog post..Impatient
I can relate to this post on many levels. Hang in there and know that you are not alone.
What is normal anyway? That is what I end up telling myself as I watch Zoe learn to read as Nick struggles to even sit still for five minutes. Last year, during his IEP meeting, I asked his preschool teacher if she thought it would be helpful if he could be in the same classroom with his sister. She gently broke it to me that he would be attending “diagnostic kindergarten”. As I bit my tongue to hold back the tears, I looked over at him and realized that he is the happiest person I know. And, while I strive to try to make him fit some mold, he could care less if he isn’t “normal”. Looking back, I sometimes laugh at myself for even thinking that he would be mainstreamed into her kindergarten class. Ok, end novel.
Take care Ms. Brill, it will all work out in the end.
Vote McCain, Palin! (Muhahaha! Just kidding of course, you betcha and also Joe Sixpack–I’m sorry, what was the question?)