Coming to terms with ACC diagnose

[aracelibriesmom]

Ok this may be a little sensitive for some...
Have you come to terms with the diagnose of ACC weather it is partial or complete for your child? Do you accept it, if you do do you ever have days that you go back to denail or disbelief?

Here is a little of what I feel sometimes... My daughter is now 23 months, for the first 5 1/2 months we did not know and did not think there was anything wrong with her. We got diagnosed with ACC the day after she had an emergency surgery for intestinal malrotation... it was the hardest days of our lives. She had just had an unexpected surgery, and when I say unexpected I mean UNEXPECTED!

Never in a million years, never ever would I have guessed or even thougth that I would have a child that needed surgeries or medical interventions to live, see my daughter has been g-tube fed since 6 months (2 1/2 weeks after the diagnose and first surgery) never did I think I would have a child with "special" needs (now I thank God he chose me to be Briannas mommy) but at the time it was way too much to take in. For one She was only 5 1/2 months old, she had just had a huge surgery the day before her diagnose, also she had not yet woke up from surgery and doctors where very afraid she wouldnt, and two weeks after we take her home from surgery we are back in the hospital and are told she needs a second surgery not to make this longer than it is she has now been hospitalized over 15 times anywhere between 3 days - 3 weeks and had 3 surgeries.

At the beginning of her diagnose I wasnt in denial I wasnt accepting it either all I cared to do was look up info as I am sure all of us do... I wanted to see what this meant for my child how this was going to affect her in both short and long term. If she would talk walk etc... but since we had so many health issues her health and well being was a lot more important than to think ahead so far as to if she would walk... I just wanted her to wake up.

I dont know how I should feel, I dont know if I am being bad for this but sometimes I wish I could fall asleep wake up and have had none of this have happened.

When I have an older child Hailey, who is 4 and I have seen her do everything ahead of time and sometimes it does hurt to see Brianna not being able to join in "running" time with Hailey around the house.

I think that although it has been a slow process of coming to terms with her conditions and ACC I believe I am now coming to terms I want to say completely but wont.

Now I look at my child and thank God that he gave her to me just the way she is, I love her smile and innocence... of course I would love for her to not be gtube fed... and be able to eat by mouth, but I thank God that she is still here and I value each and every moment with her. I thank God for every day she wakes up because it means she is alive, I thank God for every time she yells because it means (to me) she wants my attention, I thank God every time she cries because it means she has feelings, I thank God everytime she smiles because it means she is happy... you should hear this little girl laugh, I thank God for every progress she makes for as small, big, slow, or fast it is it still is progress never did I know in a million years..............

How much I can love a child like her.

Is it bad to have days of denial even after 17 months? Days you wish you could make it all go away? Days that you go around talking to everyone about your child and her ACC and everything she has accomplished, and days I go around not wanting to talk about it to anyone and just be "typical"... and I used the word typical and not normal because Brianna IS normal, she is OUR normal. Normal to her sister her daddy and myself!

I just yapped away didnt I lol did anyone get me?

Araceli

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[acmunchkin]

I just read your post....and all I can say is.....I TOTALLY get it sister!
I feel like that sometimes. People with typically developing children think I wouldn't change Ky for the world. They don't understand that I wouldn't change HIM for anything but I would in an instant remove his struggles!

I just wanted to let you know that anything you feel is valid because that is the great things about feelings...they belong to you and can be anything you want!!!

Have a great night! I am so glad I found you guys!!!

[matthewsmom]

Araceli,

You didn't just yap away...lol And, I absolutely get you and what you are talking about. I get and relate to the feelings you're having, and for feeling bad for having some of those feelings and questioning IF you're bad for feeling them.

Ohhh boy do I get you and THOSE feelings!! *hug*

you wrote:

"I think that although it has been a slow process of coming
to terms with her conditions and ACC I believe I am now
coming to terms I want to say completely but wont."

Coming to terms with and accepting that your child has ACC and moving through ALL THOSE FEELINGS is such a process and different for each person. There is a process of grieving and it's so necessary to go through those feelings (as ugly and uncomfortable as some of them are).

I can honestly say that, for me, the beginning few years (and especially the first year after my baby, Matthew, was diagnosed with complete ACC at four months old) were the hardest. I was a mess...an emotional mess. Just when I would think I was doing better something would
happen to set off my tears again and throw me right back into THOSE feelings.

But over time (and the amount of time is so different for everyone) it gets better, becomes easier to deal with and the once intense pain of coming to terms with it becomes dulled.

However, I still deal off and on with various issues and feelings that pop up at different times along our journey that can open those old wounds and I still feel the sting of pain but just not as deeply as I once did in the beginning years.

Even today (and with Matthew being 15 years old) I catch myself wishing he could run and play with the other kids, that he could get on his bike and ride around the neighborhood with friends, that he could eat a cookie
or take a bite from a banana, then chew and swallow it all by himself without the risk of choking, that he could talk to me (like he does in my dreams) and do all the things that a typically developing child is able do at his age.

you wrote:

"Is it bad to have days of denial even after 17 months?"

No, not at all. I had them too. It's not bad. It's normal!

"Days you wish you could make it all go away?"

I had those days and those same feelings. I still have those days even now sometimes.

I love what (acmunchkin) April said about how she wouldn't want to change her child but she would in an instant remove his struggles. THAT is a beautifully, brilliant way to put it.

Thank you for allowing your very open and honest feelings to spill out from your heart and for sharing them with all of us here.

Brianna is a little cutie and I love that picture you posted of her! Thank you.

Sandie *Mom to 15 year old Matthew with complete ACC*

[acmunchkin]

Something I should add that seems a bit different on this board is that we knew Kyle had ACC when he was in-utero. They found something at my 23wk ultrasound and thought it was Dandy-Walker. A fetal MRI at 29wks revealed that our little man did not have a Corpus Callosum. We had some grieving and research time before he got here and knew somewhat what to expect. I mean....as much as you CAN expect anything with ACC.

One of the most fabulous things about Ky is that he can work is way into your heart in less than 10 sec. People in the grocery store remember his smile and laugh and his fabulous little personality and look forward to seeing him. We went to Chick-fil-A a week ago and we used to go every week after the park as a treat for Cody, my four year old, and the little lady that cleans the tables looked at Kyle and said "Where have you been? We missed you!" We hadn't been for a month or more and she noticed Kyle hadn't been!

You ladies are spectacular mommies and that makes every difference to your kiddos!!

[lauras]

I never had a hard time accepting the diagnosis, my struggle was denying something was wrong. When you have a 9 month old that is not crawling people ask whats wrong with her? I'd say there is nothing wrong with my baby,
Of course 9 months later we got the diagnosis. I kept it from my mom because she is a professional worrry wart. The dr who read the MRI said it was grossly malformed and was curious if the patient ( my daughter) was blind. I finaly let her read the report 2 years later!

OH and dont worry about yapping too much, everyone here knows what you are going thru. Thats why I find this board so comforting. Everyone understands and has been thru this or is going thru this.

[sharonlou]

I think every one who has a child that struggles with something feels the way you do,
Ihave had 11 years of feeling like it, it never goes away,every time you get a school report you just wish you could make it better for him not for yourself,take away all that he finds hard
But then when he does something truly beyond your expectations it just makes you burst with pride.

I feel i have been chosen to have this beautiful son with all his striggles!

some days you just feel like wrapping them up and keeping him safe ,other days you want to show the whole world who he is .

goodness me,dont know where all that came from lol xx

[dakotah]

I was so "happy" to see this topic. My husband and I are totally in denial. We have had our son in therapy, on medication and in special ed for all of his life and we still wonder if it is just in our heads! We only recently found out about his hypoplasia (11 yrs old) and feel like this is another thing we need to come to terms with! I will say our son looks very typical at first glance. After you spend time with him you may think he is a product of bad parenting. Yes we have had that assessment made. People have actually said he should come and stay with them for a week and they will help him. Jerks... If you actually get to know him it is crystal clear there is more going on than my ineffective parenting ;D

[aracelibriesmom]

Thank you to all who replied on this subject, and I apologize for taking so long to read them.

acmunchkin thank you for your words, i totally agree when you say ( People with typically developing children think I wouldn't change Ky for the world. They don't understand that I wouldn't change HIM for anything but I would in an instant remove his struggles! ) Like Matthewsmom aka Sandie said that is beautifully put! I feel the same way about Brianna... would I change HER? NO NEVER, would I change all her struggles her surgeries her health issues YES, in less than a heart beat! Would I give anything in the world for her to eat orally? YES!
Also, thank you for sharing the story about the lady who remembered Ky at the Chick-Fil-A that was very sweet. I wish I could see him smile at laugh with or at me lol He sounds like he has a huge personality. XXXX (I am so glad you found us too).

Matthewsmom aka Sandie, like always thank you for all your kind words and for sharing some of your personal feelings. Completely agree when you say (There is a process of grieving and it's so necessary to go through those feelings (as ugly and uncomfortable as some of them are).) I wish my husband would understand, when I talk about a "grieving" process he gets upset and doesnt understand what I mean... but I get you and feel the same way.

This part (( Even today (and with Matthew being 15 years old) I catch myself wishing he could run and play with the other kids, that he could get on his bike and ride around the neighborhood with friends, that he could eat a cookie
or take a bite from a banana, then chew and swallow it all by himself without the risk of choking, that he could talk to me (like he does in my dreams) and do all the things that a typically developing child is able do at his age. )) made me cry... a lot. I could just feel your fingers hitting the keys a little hard on this comment. The part you said that he could eat a cookie or take a bite from a banana and then chew and swallow it all by himself without the risk of him choking just got me... our kids eating problems are not the same but we can relate... you wish he didnt have the risk of choking I wish she didnt have the risk of aspiration Brianna loves to taste food and she KNOWS how to eat which is what hurts the most about her Gtube. XXXX

Lauras thank you for taking the time to respond to this post. I understand what you mean by not having a hard time accepting the diagnose but the denying something was wrong. I mean I was never in denial that NOTHING was wrong with her and that her corpus callosum was there... maybe it was just a hoping that it wouldnt affect her in any way shape or form... right. I would of probably done the same thing and kept it from my family unfortunetly they were all there (out in the waitting room) when the doctor came in and asked them to step out because they needed to talk to the parents alone, so after they were allowed in they cornered me until I told them what they said so it was better to just tell the entire family at once. (even though I remember crying and just saying the doctors think there is something wrong with her brain) then later explaining what i meant. Now that her condition is obvious I love to tell my family about why Brianna has such struggles and I like spreading the word about ACC so people can get educated on what it is and what it affects.

Thank you for listening, I was having "one of those days" XXXX


Sharonlou, I think I get what you mean by it never goes away... I probably wont expect it to go away 100% but I hope it gets easier to deal with as time goes by.

I agree when you say (( But then when he does something truly beyond your expectations it just makes you burst with pride.)) When Brianna started crawling recently I was soo soo overjoyed I called people texted family and friends and although not many understood why this was HUGE for her and us I was the happiest mommy on heart... when mommys to children developing "typically" take crawling for granted! lol also when you say (( I feel i have been chosen to have this beautiful son with all his striggles! )) I agree I think every one of us was hand chosen to be the mother of these children along with their struggles or striggles lol and even though it may be hard, we can do it! XXXX

Dakotah, Oh do I relate to what you're saying! and "jerks" is the correct word for people that open their mouths without knowing what is going on with these kids ((Jerks... If you actually get to know him it is crystal clear there is more going on than my ineffective parenting
)) . I have gotten the same statements made about Brianna... of course not about her health issues but on her behavioral and developmental status yes, and it makes me sooo mad and agree with you be around our kids for a week and it will be more than clear that it is not ineffective parenting lol. With Brianna I will get the whole "well if you didnt have her in a bouncer or walker or swing etc she would learn to crawl/ walk" this would boil my blood... It was like do you think I have my child in the swing all day and dont give my child time on the floor to be free? Come on lol... or the favorite "you carry her too much how is she ever going to be independant"... I wont go there lol but you know what I mean... thanks for your reply! XXXX

Thanks again to all, HUGS!
Araceli
Good night!