sometimes I just need to let it out. I do and i ask you to not to take it personally. I understand that sometimes you do not understand what I am experiencing emotionally and physically I understand that you sometimes ask pretty tough questions and I do not mind answering. But what I do not understand is following. You guys have to understand only one thing- Regina had 2 brain surgeries. She had maximum dose of Radiation to her brain and spine, she had intense chemo which destroyed her hearing and it is getting worse by month. And with that said- You have to understand that Regina does have disability. As hard is it for me to admit, it will never get better. I always have to explain to you why Regina behaves this way, or why she does this, or why she is afraid of you, or why she can't hear you, or why she has sudden outbursts.. YOu think All kids do this, it is just age, OH, she will grow out of it..... You have no Idea how many times I heard that last one- Oh, do not worry, It is just age.. She will get better... Oh, really??? Are you sure??? Do you live with us 24/7 and see what is going on? Do you see how much explaining I have to do every day before she goes to school?
You have no idea ( I know few of you do understand and thank you for that ). IF you see REginas brain up close and personal, and then Look healthy brain- YOU WILL UNDERSTAND. But I do not want to put you threw this drama. You all know how healthy brain looks like. NICE, defined, Perfect...... THEN you see REginas left frontal and there is nothing nice and defined about it. I honestly do not understand HOW SHe StiLL FUNCTiONs tHE WAY SHE DOES. She is amazing and I love her to pieces.
Her kisses and hugs make up for all imperfections she has. Her sweet voice telling me I love you Mommy, But I love daddy more when You make me clean up my house makes me just smile.Anyway, I would go on and on and on and on and on, but I just ask for you understanding. I know this will be not my last post about this issue, but I hope it will be not as depressing as todays.
10 comments:
Diana - you have an amazing grace about you. I know people must tell you this all the time and it gets frustrating because really, is there some other option you have besides dealing with this and advocating for your child? My kids issues are no where near what you deal with but I can tell you I have been there - feeling like people are never going to fully understand what it means to have a child with these problems. It's okay to let it out and vent. It's a lot to deal with and you, my dear, are an amazing woman.
I agree with Joanna. Every time I read your blog I am just amazed by your strength... and your blog is your place to vent, so don't feel bad about it.
Hi Joanna. I have been thinking about you a lot . I wonder is your son D. already breaking some major hearts, How is your Daughter doing with school and friendship issues? How's live in Vegas , Do you visit Disney land often... Hint, hint..
Diana: my dd had hepatoblastoma at 20 months--lots of chemo and a resulting hearing loss but no radiation, thankfully, and is now 16. You're totally entitled to vent: unfortunately no one will ever completely "get it" but you. Some of us who have been there and have the oncology mom t-shirt will come close, but it is your experience and you're allowed to rant and rage all you want. Your grace and courage (not that anyone ever gave you a choice to be anything but graceful and courageous) shine through. It's your blog....vent away.
~Lori
Thank you Liina and Lori. Lory , I am so happy to hear that you DD is doing great :)
Diana,
You are an amzing mom.you are not alone here. I feel the same way when people keep comenting my son and feel sorry for him. Believe me, sometimes I dunno what to say when somebody said " oh that thing is only 6". EXCUSE ME, did u say "that thing", that thing is my boy, he had full brain and spine radiation, yes He will not grow as normal as your kid will grow.
Go REGINA, we love you :)
Natalia
Love the black and white photo of Regina. She's one beautiful and amazing child. But then as they say the apple doesn't fall far from the tree? Her Mommy is beautiful and amazing also.
Kudos to you - an amazing mom. We've not met, and yet I've become a regular reader of your blog and complete fan of Reginas.
I found your blog a few weeks ago while searching for families with similar experiences - my daughter was diagnosed with a brain tumor last fall.
I so appreciate your openness and gather strength from your family's experiences. Thank you so much for sharing your journey. You and your family are in my daily thoughts and prayers.
I have a friend who has ovarian cancer and everyday I think about her struggle but I cannot imagaine your struggle. I do admire your strength and the best thing about life is venting! Vent, vent vent...because of people like you who make this world a load of difference! God Bless you and God Bless Regina and God bless your family!
Dear Diana,
you have the full right to vent. And I'm glad you do that and don'd keep it inside you. It's good for you and good for the people who are reading your blog.
You are just an amazing mom and an amazing woman! I just love your openness and honesty! Let's still keep the faith and keep fighting! :)
With Big Hugs,
The Cutlers from Chicago
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