Thursday, May 23, 2013

My Good Girl

Tonight at bedtime, we were reading to the girls. Reading is a big fun time at our house and we had a nice stack of books this evening, including one of my favorites "Everywhere Babies." The book is very cute. B got it for her first Christmas and I knew that C would love it the same way B did, and I was right. The funny thing is, the last line of the book always brings tears to my eyes: "Everyday everywhere babies are loved. For trying so hard, for traveling so far, for being so wonderful, just as they are."

My girls try so hard, so very hard.

In the last year or two, B has really struggled with behavioral and sensory issues during reactions and reaction recovery. She has pain, a lot of pain, and she exhibits a lot of disturbing behaviors that only present themselves during a reaction or in the immediate recovery period. Behaviors that I haven't seen since I was working in residential psychiatric settings. Thankfully the majority of these have occurred at home but there have been a few to occur in public settings.

Every time I see her that way, my heart breaks.

My girl gets lost inside of herself, lost behind tactile defensiveness, behind that horrible scream. I sit with her, as close as she will let me sit. I offer to hold her, I offer to bring her water, blankets, stuffed animals, anything. She continues to scream, thrash, claw at her skin and clutch her stomach.

This is my good girl, the girl that loves to hug her baby sister, the girl that gently kisses each of the newly opened daffodils in the spring time, the girl who snuggles up to me to read a good book.

Eventually, she allows me to give her benadryl and takes a sip of water. Eventually, she starts to "come down." Eventually, she allows me to hold her and her screams turn into tears. The clock keeps moving and the morning comes. After she wakes, she asks why I am tired. Why we can't drive anywhere in the car today (because I am too tired to drive). I remind her that we were up together in the night and she says she doesn't remember. I believe her-- she doesn't act or look as though she remembers.

When B was a baby, I would sing her a little song, "She's a sweet girl, such a good girl, such a happy girl--- Mama's happy girl." She called herself "happy girl" as a young toddler. She loved hearing the "happy girl song." She has had many, many ups and downs and been thrown quite a few loops, but inside, I still see glimpses of my "happy girl," even in the middle of her darkest nights.

So why am I writing about this? Why now?

I have kept a lot of this to myself, trying to maintain some dignity for B, and to be honest, out of insecurity. Here I am, trained and well-versed and practiced in de-escalation strategies, yet I can't figure out how to help B at the times she needs me the most. All I can do is to be there with her and to wait, wait it out.

Maybe that is the point to this post. I remember when she was a baby and she would scream for hours upon hours. I was scared, bewildered, and sometimes I would cry right along with her. But I remember thinking to myself, even if I can't figure this out, even if I can't fix this right now for her, I can hold her. I can be with her. And four years later, that is what I am still doing.

My hope for her is that we can find a way to help her cope. I want to find something to take away the pain or at least take the edge off for her. I don't like that her world feels so scary and so painful at times, times that happen far too frequently.

I want these things because I want the world to see her as I do-- my good girl. Not a "behavior problem" or a "difficult child," but as the good girl that she is. The girl that I know will grow up to do wonderful things and that will change her world, just as she has changed mine.

So if you know B, because of this blog or because you have had the good fortune of meeting her, I hope that you will think of her for being this good girl. I hope that she has already changed someone's world through her recipes. I hope that she has changed someone's heart by their reading of this post-- maybe next time they see a child having a meltdown, they will think of her and how hard she tries and how scared she sometimes feels. If we can accomplish this, then her work of changing the world has already begun. Thank you for supporting B.

11 comments:

  1. My opinions of children having melt downs have totally changed since having a son with FPIES. I too pray that people will see the happy fun loving boy that I know and I get frustrated that he has a reputation for being a difficult baby. One day B will be old enough to know she has the best mommy in the world. Your blog is testament to that. Thank you for all of B recipes and your insight. They have helped us in many ways.

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  2. Your recipes have helped us sooo much from Ella's first and only "cracker", to the muffins she loves and eats near daily, to helping me to adapt recipes. I credit you with being the reason my daughter is gaining weight and why I am not starving on my current breastfeeding elimination diet for my second child. I love your strawberry cereal bars. They are so yummy!! Thank you so much! I wonder if you have tried to get help from an occupational therapist for the sensory issues? There may be some sensory
    strategies to help B get through the extra painful times. You have helped us a ton. I appreciate it and send you much thanks!

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  3. Thank you so much-- you guys' words mean so much! I am glad that she has helped both of your LOs. :)Thanks for the idea about OT-- we are wondering about that as well. Again, thank you for thinking of B!

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  4. I came to your site because you are recognized as the recipe guru and read your beautiful, heartfelt blog. What a fabulous mama you are.

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  5. Sending my love and hugs across the virtual miles, sweetie. I'm a Mama from the babycenter FPIES community and my little guy just turned 4 too. I cried as I read this entry, as I share your experience in many ways. FPIES has created a strange Jekyll and Hyde persona for our LO too. We've had reactions just like you describe and it's heart wrenching and disturbing and yes, it feels like a psychiatric episode of some kind. It's horrible to feel that barrier and it doesn't make any sense. Our son is a happy soul too and I pray that everyone will keep that in mind regardless of what they might witness on any given day. Keep your chin up hon - you are an incredible Mother and we all think the world of you!

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  6. Thanks, mama-- it means so much! Although I am sorry you guys are still wallowing in this mess, I am happy for the company!

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  7. You are an amazing mother. Your girls are extremely lucky to have you, and don't ever forget it!! Your family has helped my family more times than I can count!! (Trust me, it's a lot!!) Tell B, she can send me a message on FB tonight and I will send her some goofy smilies again. =)

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  8. This is beautiful, and everything I ever felt but couldn't say about my Wyatt. I love this. We are another FPIES family, pulling for yours. Hang in there mama!

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  9. Thank you so much! It means a lot!

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