Well… as good as last week was, this week wasn’t so hot. Anna was suspended from school on Thursday for an incident that happened on Wednesday. I debated on whether or not to share the details, but decided that Anna deserves to have people understand her behavior… and if you see someone agitated and acting…
So we saw Anna’s geneticist Tuesday morning. Really the only changes since the last time we were in three years ago is that Anna developed hypothyroidism, she has increased laxity in her joints, and her kyphoscoliosis is worse. There is an additional test we could run now if wanted, but it’s quite expensive… $7-9K at…
Oh Holly my friend. Yes this is amazingly hard, far harder than anyone should have to deal with and these new challenges sound tough. But please remember how far you and Anna have come already, these years have not been easy and yet look at how wonderful Anna is. She is a beautiful young lady and I have every confidence that you will together, with the support and love from your family and friends, cope with these new challenges and the reality will be much better than what you are imagining right now. You are loved Holly and we believe in you, please remember that. Rebecca x
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I just want to say that your daughter is beautiful and your love and respect for her is so so so very beautiful. I could never imagine the challenges you face and you are a wonderful mother. <3
I completely agree with, Rebecca. You have been through so much with sweet Anna, but yet you both continue to grow and thrive together. All these things you don’t want to hear — will only make you all stronger. :::hugs:::
Oh Holly, I’m just stumbling on all of this after checking out your Facebook page. You are so strong and such an inspiration. Big hugs.
The My Four Hens Project 52 theme this week is Thankful. This week I got to spend more time with my mom than usual and for that I am grateful. After school Anna has been going over to Nana’s house to play nearly every day. I followed her over one day and found her playing with Grayson,…
Today marks three years since I last witnessed Anna have a tonic-clonic (grand mal) seizure. The 4th of July will always have extra significance to me because of this. I can’t say for certain that she will never have another seizure again but I’m definitely more hopeful now than ever before. I fervently hope that…
Wow what a journey you have been through. I hope she stys seizure free! How is she doing with her other diagnosis?
I can’t imagine all you have been through with your beautiful little girl! I hope at least the seizure part stays under control for you… My heart is with you!
As a parent, I can’t imagine going through anything like this. I hope she continues to do well and seizure free.
Holly, you are an amazing mother to a beautiful girl. I am so happy to hear Anna has been seizure-free for this long!
I’m participating in a fun 12-month challenge at Clickin Moms called “The Way I View”. Each month a group of 12 CM photographers interpret that month’s theme through photographs, then link to each other’s blogs. April’s theme is The Way I View: Friendship. This is going to be quite a different take on the theme than my…
This brought tears to my ears. It is a stunning image by itself, and a forceful one with the back story. It made me think (which I always appreciate) even though we all have different trials to deal with we are also bonded by common experiences. As a parent our heart breaks when we cannot give our children everything they want and desire, when we would give anything to help them but there is nothing we can do. Still tearful over here …
oh holly. big big hugs to you and your sweet babe. i know that she is a very happy girl but i can feel her pain too. this picture, while sad is beautiful. just beautiful. we don’t all have the same friendships in life. you caught her friendship with that baby all like only a loving mother could. i so wish we lived closer.
your’s and ana’s journey inspires me. 
Holly this is heartbreaking, as a mother I know we do anything and everything to make our children’s life perfect and it is a desperate feeling when things we want for them are out of reach. Even though we can’t do it all Anna is so very lucky to be your child, she has not only a momma but a friend. Thankyou for sharing your powerful image and story.
Cary recently posted..April How I view… “Friendship”
Okay so I notice that I said this brought tears to my ears – yeah, hello! I was too busy wiping tears to edit myself.
Holly… I so wish we lived close by. I have a super patient 12 year old who I know would love to sit quietly and be her friend. This is just heart breaking for any Mom. Such beautiful but sad image.
Oh Holly 
This really brought tears to my eyes. I can’t even begin to imagine, poor Anna. I do know one thing though, she might not have the friends she so desperately wants, but she is beyond lucky to have you for her Mummy xxx
I don’t know why I’m just “C” but it’s me Holly! Love this, and so moving xx
Aw, Holly, this photo is beautiful and sad at the same time. You have captured so much emotion in this one moment. I can’t imagine the heartbreak you feel much of the time my friend because all you want is for her to be happy. She looks like a beautiful young girl and I hope to meet you both someday soon!
The window pane can be so much more than just autism. Children are excluded by their peers for many reasons. The picture is awesome. In an earlier time in my life that could have been me; but the window pane would have a whole different name – but the feeling of exclusion and loneliness is the same. You caught it all in that picture.
Anna is however a very very happy child – as you said but others might not understand. To be with her is delightful and someday she will have a friend. Of that I am certain.
I thought of her just this morning when our local news covered a senior prom put on by a family and consumer science class at a local school for life skill kids. All dressed up, dancing with friends, having a good time. A nice controlled and safe environment. I am confident that Anna will someday be able to interact at a level that will allow her to participate in things like this.
She has come so far, is so brave, and works so hard every day at coping. I don’t put anything past her. What she does so well is love others.. her family and her dolls.
Love you all.
[...] The next day I focused on using Anna for a few images. I shared this one for The Way I View: Friendship for the April [...]
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pam - Why did the school stop using her BIP? Does the BIP state different levels of consequences? Does it state what they will do if she get’s physically aggressive? I had an autistic girl a couple of years ago, who would have these meltdowns around her cycle too. It was obviously PMS stuff. We learned to handle her a little more gently around that time, and sometimes I just pulled her into my classroom until she calmed down and was able to go back to her class. There are options.
Holly - Hi Pam, thank you for your thoughts. We stopped using her BIP in January because she’d had no incidents of aggressive behavior all year. What she’s doing now is completely new, so we’ll have to write the BIP from scratch and I’m going to push for consistent consequences as apposed to escalating consequences. It is very helpful to hear from teachers and get another point of view, so thank you very, very much for chiming in. <3
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