we’ve had a rough summer with this one.
its hormones or its something else, but whatever it is we need help.
she is mostly unhappy, whiney, and cantankerous. cantankerous is actually the most perfect word for her this summer.
cantankerous.
so we are going to see a neurologist, which we should have done 2 years ago, but other stuff came up and it was put on the back burner. (her burn injury and physical healing that was more important) i am hoping to learn more about what makes her brain work the way it does. we have no diagnosis for her, only the symptom of mental retardation. and that has been okay for a long time. but im wondering if there is more information out there for us now. seven years later.
if there is, awesome. bring it. something to fill the questions in my head. questions i dont let myself dwell on very often. just sometimes…ill see an 11 year old girl. and realize that this pre-teen gangly thing could have been my daughter. and it makes my heart ache. its the most empty feeling. we will never know her like most people know their children. most of her mind is locked up somewhere high on a shelf in a closet in the back room of her head. someplace we cant get to.
if there isnt a new answer, we will be okay. nothing will have changed. and as they are, things are pretty good. right where they need to be.
sniff, that totally made me tear up! god bless you and your beautiful girl tara (and the rest of the fam.) i hope your questions can be answered.
mine is days away from turning 10 and cnatankerous is the perfect word to describe her. I am not ready to deal with another hormonal female!!
you are such a beautiful soul, guiding and protecting another beautiful soul. i’m hoping you discover your answers and if not, then hoping you find peace within. {bear hugs from utah}
Tara- She is a lucky girl to have such a
wonderful mother and father. Hugs to you all…
This is a gut and heart-wrenching post. I feel for you. Good luck with everything – hope you get the answers you’re looking for – or at least something.
I had to take myself away from the computer and compose myself before writing. This is tough. It just plain is. Your brave and beautiful nature makes you deal with it well.. but that doesn’t make it any less tough!
My uncle shares the same label as her. He is now in his 50s. Obviously our family have been dealing with these issues long before society were prepared or able to. He visits and spends many weeks with our family over summer. My grandparents moved him to ‘Sunshine’ a ‘home/school’ when he was 9. It breaks my heart to think about doing that and what it must have been like. Luckily Sunshine has had some great leaders and some not so great ones but they have tried.. they had tried new things, experimental ideas and concepts and over 45+ years.. have made great progress.. The last 10 – 15 years have seen him really shine. He can now work out concepts of time, days, and his communication has improved beyond what we though they would ever be. He is my favorite relative.. he comes with a pure and cheeky heart and spirit. Unlike some of the others ;) I will find the homes details and send them via email.
I hope you find what you need! Thanks for sharing, you are an awesome Mommy!
she’s lucky to have you tara! i hope you find something out that will explain all of this for you. i love you! :)
i’m a lurker…but today i am moved…so moved my your post. i’ll be sending you good thoughts while you go through this process. my #1 is special needs and most days that is ok, great even, he’s so neat in his own way…but then there are those days that i just have to ask ‘why me?’…i feel you sister…hang in there!
thinking of you…hugs. :)
I hope you get more answers. She certainly doesn’t look cantankerous in that pic!
My dd had been labeled with a developmental delay and sometimes I see kids her age and think the same thing, what would she be like if…., but then again I wouldn’t trade the person she is now.
Best of luck! You are a great mommy!
(((hugs))) tara. she is so beautiful. she has such a sparkle in her eye – even if she is cantankerous! ;)
i hope you get the answers you are looking for.
Tara- My son has Down syndrome so I understand at least a little bit of how you feel. Have you ever read this blog: http://davehingsburger.blogspot.com/ He’s an expert in his field and really puts things into perspective. Based on your writing style I think you and your husband might enjoy him.
She’s gorgeous.
Hugs Tara!
And thank you for the link, Kristyn!
“sometimes I see kids her age and think the same thing, what would she be like if…., but then again I wouldn’t trade the person she is now.”
and yes, Kelly S. – that is just so it!
we have an 11 year old with no diagnosis.
Bang. Head. On. Brick. Wall.
Im with you on the “life in limbo” scene.
And it hurts really bad.
with love xx
I have a six year old girl with apraxia, a severe speech disorder which renders her uniteligible. To see her struggle daily to communicate with others breaks my heart into millions of pieces all day long. I can’t imagine not being able to share her world with her though. Your family is in my thoughts today. all the best to you
as hard as it is Tara she is a gift to you and you are to slowly unwrap her, one piece of tape at a time, she will not let you unwrap her like the other ones. it is also sometimes necessary to get help for ‘yourself’ unwrapping this gift precious gift.
oh but sometimes what we find inside is so unlike anything we have ever received and so worth the wait. but remember it’s not always the gift we think we are going to get.
good luck, your doing an amazing job whether you see right now or not. {look at those eyes}
Oh, Tara I really feel for you! It’s such a challenge when one of your children is unique in his or her own special way. I have one, too, although not to the extent of your sweet little girl. But it’s been one of those summers for me too. Feeling like I’m losing ground with her, not understanding her little mind and what makes her tick. Tough stuff. Definitely keeping you on my mind, hoping & praying you get the answers you so deserve!
No words, really. I can’t even imagine. But I promise you that I will think twice before I become angry with The Resident Teen Ager again.
Hugs, love, and gratitude (for making me think)to you.
Best of luck to you! If it is just to better understand her…then go for it!! :)
She is a gorgeous girl!
*sniff* I hear ya. I just had to pick myself up last weekend after we went to a wedding & I realized that I will never dance at the wedding of my child. Sometimes things just are and it sucks. We have a diagnosis but I have always resisted it because I didn’t want it to define him as a person but as we grow older I see it’s usefulness and I am now able to udder the words without feeling as though I’m swearing about him. It’s hard because as they grow older & things get harder I often wonder what is because of CHARGE and what is just him being an 8 year old boy… we know those are not the easiest of creatures.
Anyway I’m rambling but I wanted so send you some thoughts because I know how some days things are just harder to swallow than others.
tara – her eyes sparkle and her smile is sweet and all i see is a beam of love aimed at you!
her mind may be a mystery but i bet she’s cranky because of hormonal changes that she can’t understand – i’m sure that the next years will be even more of a challenge… but i’m also sure that she will thrive with such a warm loving supportive family!
my heart goes out to you and yours!
caro
Tara– you are a fabulous parent. I love seeing the way you raise your children. All of them are absolutely amazingly beautiful boys and girls. I love reading about them and the challenges you meet along the way– though all of “our” challenges are different, it’s always encouraging to see how others (especially amazing parents like you and Jeff) get through the rough days.
Hugs to you and yours!
First of all….here’s a hug! I know the feelings you are having. It’s hard dealing with the what ifs…If I could have one wish it would be that my son could tell me what is going on inside that head of his. It is frustrating for those of us trying to understand but take comfort in knowing that your daughter is so loved for who she is. It certainly doesn’t make any of this easier but that is the comfort I have come to accept. Some days are worse than others but I love my son with all my heart and the days when he connects with me makes it all worth while! We were given our children for a reason…to make us better people…to make our other children better people…more tolerant,loving, accepting, giving, kind, people. That is our role. To give it unconditionally. I hope you have some success in finding out some answers or suggestions to help your daughter and your family. She loves her family so much and vice versa. You can see it in the pictures you take! Hang in there! Shelley
What a lucky girl she is to have been born into your family.
There is a wonderful book I have just finished reading called ‘a friend like Henry’, written by Nuala Gardner. If you haven’t alreay read it it’s well worthwhile. It’s the story of the journey a mother had to take, initialy have her sons problems diagnosed and then the steps she had to take to help him. Very emotional, both up and down but a beautiful inspiring story well worth reading.
Hugs to you.
S
that photo just makes me smile. prayers that maybe you can unlock some more of her secrets.
sweet girl.
Tara~
Prayers and hugs to you and all your family. Good for you for fighting to reach her better, to love her more, to understand her. If eyes are the windows to your soul, her soul is lovely and joyful ~ look there too! Hang tough and remember you are cared for and in many many prayers tonight. So, is she!
((hugs)) Tara – i know you already know how wonderful she is. i know you know what a gift she is … parenting is a challenge at best, on most regular days, i can only imagine what challenges there are as you describe here.
may your journey with her be fulfilling.
again, (hugs)
Oh sweetie I was just welling up with tears inside reading your post.
That photo of her is just so precious.
Good luck with it all.
Just always know that you are always in my thoughts n prayers.
Hugs
Tara…
I too have an 11 year old daughter and the hormones are some times hard to handle (especially when you’re suffering from a bout of hormones yourself).
McKenna is a beautiful girl and so lucky to have the family she does. I know things seem tough right now, with so many unanswered questions, but know that this too shall pass and your love and strength will be stronger than ever.
:) Jennifer
Hope you find some answers…
Love moves us and makes us who we are. You. And her.
This post silenced me. Stopped me from moving for a moment. Thank you for your genuine heart.
Hope your questions get answered.
You are such a wonderful mother!
You have such a great heart!
Please keep us posted…
Take care!
HUGS!!!!
Tara, wish I could hold you tight and say it is ALL OKAY. Your are proud of McKenna, you value her and you listen to her. Helping someone realise their value in life is one of the most empowering things you can do and you as that beautiful girls mother so diligently walks that path. But sometime we are human and we doubt ourself and that is okay too. It might be good for both you girls to put extra emphasises on that value for a while.
I am speculating here but McKenna might feel that she is not adding much value to your family at the moment feeling frustrated and not so happy and you might feel that her behaviours is not of value, which is very understandable. Try to break the cycle. This is the hard part and where writing this post is so much easier. Emphasise her valued behaviour and her realising that she is valued might aide in breaking this pattern.
It is my wish that you will be able to find out some more about McKenna’s diagnosis and that the knowledge will aide you in your journey of being a great Mom.
I love your blog and your love and admiration for you children are one of the reasons I love your blog. I love children and spend lots of time with all my friends children. Sometime I feel a bit guilty because I think sometimes I invite them over so I can have some time with the kids. However I am not brave enough to become a Mum myself. I have suched great admiration for those women worthy of the title MUM.
Only once in my life have I experienced tragic horrible unknown events that left me sad, alone, sick and scared. I was given hope and an answer, a blessing times two. I can not even for a moment imagine experiencing your heartache. I have always wondered about your beautiful daughter…your pictures reflect nothing but intense motherly love towards all of your family and for that I admire you in so many ways. Many prayers and blessings in your family’s quest to get the help and knowledge you deserve to have. (((Tara)))
Ok I never do this but I work in neurodiagnostics and have a little insight as to what you might expect as far as testing after you see the neurologist. Sometimes just having an idea of what to expect makes it a little less frightening. If you would like some more info just shoot me and email.
she is beautiful.
Moriah has taught me, that some days and some moments are just crappy…and I shouldn’t try to to make her feel that they aren’t.
Both of you have your heads on straight and are totally amazing moms…and you rate to say things suck once in a while.
So like I do for her, I am going to shut the hell up offer up a big {{{hug}}}.
You are in my thoughts…as is that sparkly (and cantankerous) girl!
it seems everything has been said. but still i will add that i’m so so sorry for the emptiness you feel. and for the brokeness that your daughter has to walk through this life with.
i will pray for answers and peace.
it seems everything has been said. but still i will add that i’m so so sorry for the emptiness you feel. and for the brokeness that your daughter has to walk through this life with.
i will pray for answers and peace.
Hope is the thing with feathers that perches in the soul,
and sings the tune without the words,
and never stops at all….. [emily dickinson]
Best wishes in your search…. you have a beautiful daughter
between your post and moriah’s post, i’m bawling all over myself. ((HUGMUNGOUS HUGS)) from one momma to another. i’ll be praying for wisdom and answers as you begun these appointments.
Life really is a roller coaster isn’t it? I don’t have any great words of wisdom, comfort, or advice. Just wanted to say I was thinking of you and your family. Keep hangin’.
Good luck as you and your family try to unlock these mysteries. You’re not alone and there is help out there to find the keys that will make all the difference.
remember when she was only 2 or 3, no diagnoses and as frustrating as it was, you loved her more than any parent could love a child? remember that it didn’t matter if or when or what the diagnosis was? You’ve been like that her whole life, you’ve gone through the frustrating, the happy, the ignorance of others, the life threatening and you’ve done nothing but love her more and more. you are admired for that and I know you’ll continue to be. good luck at the nuero. i’ll pray you’ll get some answers.
She is utterly blessed that you are her mother.
I hope someone will be able to help with your questions.
Wow, that’s some powerful stuff Tara. Thanks for opening up. I have a four year old son with special needs, I know what you mean about wanting to know what is in that head of yours. Good luck with the neurologist…we’ve seen a few ourselves.
If you really want those answers, I sincerely hope you find them. You seem like an awesome Mom and I’m sure you will take all of the steps you feel you should. Follow your instinct, Mom.
By the way… cantankerous is the perfect word to describe how my 3yo, Camden, has been for the past month or so. :::deep breath::: ;)