Monday, September 27, 2010

The SQUIRREL! in my head: brain injury, you can bite me. Oh, you did.

I started this post at the beginning of September. I have moved it forward in my drafts folder since September 1st. Getting this out is why I said I'd post all month, although I didn't. But even though I've not resolved all my issues, the load gets lighter day by day, just because I was going to tell you this. Aren't you effective little therapists, you!  You should be charging more.  Hey, those pants look great on you!

So, Hannah had a stroke. We thought she had anoxic brain damage as a result of her metabolic crash two days after her birth. To avoid the "MCADD babies can't be allowed to fast" issue, we waited until August 27 to get her MRI, and the findings are twofold: a stroke occurred sometime in the past, and also something akin to anoxic  brain injury but not looking very textbooky, so much so that the neurologist couldn't fully interpret it and referred me to the neuroradiologist who did the analysis. It is still freaking me out. Like the dogs in Up, and their immediate reaction upon even thinking of small furry bushy tailed chattering creatures, I find myself shrieking (only on the inside) STROKE!!!  My thoughts race from MY BABY HAD A STROKE (in all caps) to oh my God how can she be so cute! So determined! So smart! So joyful, and frankly, so pleased to be her. How can anything be bad with a child like that? STROKE! Did you see her just use her right hand? Watch her run! See her joy level? That kid is pleased with herself. STROKE!

I went on antidepressants approaching a year ago - my infant was diagnosed with cerebral palsy, I work full time, and getting her up and moving was taking a huge toll on me, and I couldn't keep my shit together at all. I hate to cry that much, and especially in front of either child as I hate to make either of them think they make me cry, and I hate crying anyway because it gives me incurable headaches and then I'm just not me.  I switched to a different antidepressant when I stopped nursing/pumping altogether and it is a better fit for me, and I am eternally grateful such things exist to push me through, besides my love of cheese and candy. Now that I finally got an MRI of my my baby's brain, and found out she had an actual stroke, I am back to the beginning of the grieving and the anger and I am now obsessively thinking all the time "wow, see her learn that new thing. STROKE!! "  This bouncing back and forth between thoughts of such extremes is wiping me out.  But look at her walking, running, using to learn her hand, MY BABY HAD A STROKE and on and on in a cycle of HORROR! JOY! HORROR! JOY! I feel like I might be getting a taste of the manic depressive lifestyle as my mind cycles wildly with "my life is better now than it's ever been" and MY BABY HAD A STROKE. Let's just say I am fond of Xanax, and glad I am no longer pumping and unable to take such a gift as a muscle relaxer.  Someone whose blog I like to read mentioned thinking of trying some therapy to deal with anxiety. I've never done therapy because I know if I talk about what is on my mind I will cry for an hour and get a whanging headache and I just can't see how it will help me. If my fellow blogger gets benefits from this, it will help me reconsider my position, maybe, but if I have now found four hours in a week to get to Jazzercise how could I possibly give those hours up for a crying headache, when instead, (turn on your inner Bee Gees soundtrack) "you should be dancing YEAH! Whatcha doin' on yer back?? Yeah-ah-ah Whatcha doin' on your back?? Yeah-ah-ah! You should be dancin', YEAH!!"

In my heart of hearts I think it is completely legitimate to feel cheated and angry and everything else. I feel many of these feelings because my daughter, my dear sweet daughter who only deserves the good in life, is afflicted with CP, the after effects of a stroke, and so on, and I am angry, jealous, overwhelmed and simultaneously filled with joy over every small accomplishment and blessed not to have lost her and frankly sometimes I feel completely whacked out because I am SO UP and SO DOWN at the same time. It is doing my head in. I think we have to forgive ourselves for these feelings we don't like, give them recognition and don't blame ourselves because feelings are feelings and you have to feel them, and you can't beat yourself up over it because you remember those feelings and cry at stoplights. And since I started this post, at the beginning of the month, even as I moved it forward and forward in the drafts folder, I have cried less, and felt more joy. WHOMP! upside my head, because that all makes so much sense.

Hannah is going through this amazing blossoming transitional phase as she now goes with the big babies, the twos, at day care and spends all day walking on the slidy shifty wood chip playground, and interacting now with the kids her age instead of the ones who were at the barely walking stage, and she is an absolute delight to behold. She understands everything I say, and while I was on the verge of doing a speech eval, but dreading having any more damn therapy, in the last two weeks she has said at least twenty new words, many of which she continues to use, and tried out sounds of others.  She'll say "Hi Mama!" (a two word sentence!!) or "Hi Dada" or "Hi doggie" and today said "thank you" to someone she doesn't even know particularly well.  Tonight she pointed to the fruit bowl and said apple and after we all shared an apple and the girls wanted Cheetos, I held out a Cheeto (natural Cheetos only, here) and said "say Cheeto, Hannah!" - she did and it was clear as a bell. I praised her and handed her a Cheeto and she said "thank you." She loves to use her right hand when I cue her to and have me praise her. She stuffs asparagus spears in her hand and waives them around for praise.  She gets all smiley and flirty, and when I'm not making her use her right hand she is still more two handed all the time, sometimes just to get me to praise her. She is amazing and then I get this neurological news - I've not actually met with the doc yet as she was off the whole next week, and when she had time for a short call, she told me the results were too complex for her to interpret and I should speak to the neuroradiologist. I think I will follow Jo's advice and just not call him.  This big damn bag of HIGHs and LOWs cycling in my head all day long is plenty of fun, I'm not sure I want an expert to give doom and gloom, when I can just work with my glorious daughter and enjoy her.  I'm kind of more manic and nervous than ever, trying to be uber special needs mom, and kind of my happiest ever to see my results with my girls. They are some effective little charmers. It is like a Hallmark special here all the time, what with the learning and giggle fits and the sister kisses and hugs, and the joy they show to be with each other.  Every time one kisses the other to cheer her up from some injury or pratfall I think my heart will burst with joy.  Even Hannah, despite all the selfishness of being two, will go hug Claire if she has fallen (but she wisely does not when it is obvious Claire is overreacting, which I find hysterical).  Claire, who is a very astute observer, has picked up on my cues and watches Hannah and praises her for using her right hand - very specifically -"Hannah, you put your necklace on using Righty!  Good job Hannah!"  And at least once a day, Claire tells me I am the best mom in town.  I think they like me!  Right now, they really like me!

I know it won't always be so blissful.  My wise big sister tells me the good gets better and the hard gets harder, and I know I'll be shattered when they start doing the things I did (Lord help us all) and Hannah won't necessarily escape some surgeries and procedures to keep her progress progressing, but just look at the videos I've posted here and tell me I shouldn't wear rose colored lenses.  And then, SQUIRREL.



  1. If I was going through what you are going through, absolutely I would be reacting very similarily, but most likely with far less grace. More SQUIRREL! and less JOY! because I can be like that. I think it's also just fine to be angry. It's okay to be angry. It isn't fair, it isn't just, and all the platitudes in the world mean nothing when you're a momma whose babies are struggling.

    But, oh, such beautiful and wonderful babies. And I will say--and I do NOT mean this as a platitude or justification whatsoever, but more as something to keep in mind--that some of the most marvelous people I have ever met are the ones who have struggled the most. They're the most real, the most joyful, the most loving, because they have learned like few people do just what really matters in the world.

    I do want to ask--do you have an email address that I could use to respond to a few of your comments on my blogs? I'd love to do so, but sometimes don't feel like I can respond in the comments.


  2. I can only imagine that SQUIRREL feeling. keep writing, if it keeps you from crying. I'll be here listening and reading. <3

  3. I want to comment but I'm not sure what to say. You are very wise and I'm not surprised your girls like you very much.

    I went to therapy for a few years and it did help me to cry less and deal with things better. But you should do what you think is best for you. Exercise is also brilliant.

  4. “My thoughts race from MY BABY HAD A STROKE (in all caps) to oh my God how can she be so cute! So determined! So smart! So joyful, and frankly, so pleased to be her. How can anything be bad with a child like that? STROKE! Did you see her just use her right hand? Watch her run! See her joy level? That kid is pleased with herself. STROKE!”

    Your daughter is pleased with herself because she doesn’t know any other way to be. That is as it should be. Your daughter lives life with joy because she doesn’t know any other way to be. That too is as it should be. Your daughter lives her life like any other child because she views life like every other child her age. She doesn’t know that she had a stroke. She doesn’t see herself as a stroke victim. She doesn’t view herself through the prism of a stroke victim. NEITHER SHOULD YOU!

    Please trust me that I am writing this with love and patience and understanding and respect. From the parent of one stroke victim child to another, she is a beautiful young child who just wants to live her life. I know that you do everything that you possibly can to help your daughter develop because she is your daughter and you love her. AND, if you do not stop looking at her as “the stroke victim” you will never see her any other way. You will miss out on a lot. She will pick up on the fact that something is wrong and that you look at her differently than you do her sister or the “normal” children. That will affect how she looks at herself.

    I hope that either through exercise or anti-depressants or therapy or prayer you can accept the things you cannot change, change the things that you can change, and learn to recognize the difference. Yes, your daughter had a stroke. Yes, there are challenging complications that on some days seem to control every waking minute of your life. Things are what they are. What other choice do you have than to deal with the situation as best as you can? Personally, I was able to handle the situation through prayer and my faith in God. Active prayer made all the difference in the world for me.

    I apologize if this reads as insensitive. I’m not scolding. I don’t know how to express what I mean to say, except to encourage you to come to terms with what happened. Life isn’t fair. Bad things do happen to good people. Take a cue from your daughter and just live life. AND, IT DOES GET EASIER. Every success that she has makes life easier.

    Now, go live life to the fullest like any other mom with any other kids.

    My prayers will be for you and your family.

  5. First. I don't gush about other people's kids. I love mine, but kids in general don't thrill me too much. But in that first video? I could freaking EAT. HER. UP.

    Second. Better living through Chemistry? Yes. Definitely. And Booze. And I don't know if I could do therapy either (and Lord knows I NEED it.) I'd cry for an hour too.

    And not for nothing, but my son who had two brain bleeds as an infant didn't look nearly as good as Hannah at the same age. And look at him now.

    The highs and lows keep on coming, but you may acclimate to the ride.

  6. Thank you all for your support, and no, Arby, I didn't take it as a scolding. I'd like to just be happily accepting as Hannah is, but it will evidently take me some time to get there. It is getting easier, but it isn't easy yet.

  7. Hi Ginger,
    I still get down about my son's stroke. I'll watch him move awkwardly next to kids on the playground who didn't have a stroke and wonder why. But then I see how he can charm just about anyone with his little peek a boo flirt move and think he's gonna be a heart breaker some day.

    I'm glad we had that awful MRI. It's helped us help our boy quickly when he's little. I wish to heaven I never saw that awful MRI - it makes me cry in the car on the way to work somedays.

    I don't know about things getting easier, but I cry less now, and feel more hopeful. It's been about two years since we had the news.

    Keep writing. Keep hoping. I look at those wonderful pictures of your daughter and read how much you're doing for her and care for her and see lots of bright, wonderful days ahead for her.

    Take care,