I'm a little crazy, I've just decided that.
I'm not blogging like I should...I know.
I decided I needed to today.
I think I've realized that Makily being age five is what has gotten to me lately.
Five year olds arent babies anymore. They go to kindergarden, they cut, paste, color, glue, dance, sing, jump, yell and talk your ear off. They are obnoxious and ask a million questions, have embarrasing tantrums in Walmart and beg for candy in the candy aisle.
Makily does none of that with the exception of going to kindergarden.
I had hoped she'd be walking by five...she's not.
I had hoped she'd at least be eating some by mouth, we've pretty much given up on that.
I had hoped she at least have two words Mamma and Daddy. She doesn't.
This has all been eating away at me and I don't want to talk about it. I've pushed it back, ignored it, didnt want to deal with it because really it's been five freaking years. I need to get over it, but I know....likely, I never will. No one wants to hear me whine about the same shit over and over again. I don't even want to hear me whine about it anymore.
So I guess I have just retreated into myself which in turn cuts everyone else off.
Is this healthy? NO.
Do I know how to stop doing it? NO.
Do I want to stop? I know I need to but right now I just lack the motivation.
It's incredibly difficult to go anywhere right now when Allen isn't home. J is walking but I don't trust the maniac to just walk and hold my hand. Taking TWO kids to the store both of which can't walk on their own is a chore in and of itself. Makily is getting way too big for the double stroller. I can't use the wheelchair when we go out because then what am I going to do with J? Can't carry him and push the chair. I'm sure being cooped up in the house is not making things any easier right now either.
So there it is.
I talked to my mom about it just now. I think I need to change my medication. I've been on Effexor for five years now and I'm thinking I'm somehow immuned to it or it's just not working. I don't want to need medication and so the fact that I obviously do....well it frustrates me.
I am listening to a lot of angry music. Linkin Park mostly. They have a great way with putting frustration into a song I must say. If your ever angry/sad/mad....I highly suggest listening to them.
I'll leave you with the lyrics and video to a song that I can really relate to. When Makily was little I listened to it over and over. I actually relate to it more now then I did back then. It describes EXACTLY how I am feeling right now.
I want out of this funk.
CRAWLING
LINKIN PARK
Crawling in my skin
These wounds, they will not heal
Fear is how I fall
Confusing what is real
There's something inside me that pulls beneath the surface
Consuming, confusing
This lack of self control I fear is never ending
Controlling
I can't seem
To find myself again
My walls are closing in
(Without a sense of confidence I�m convinced that there�s just too much pressure to take)
I've felt this way before
So insecure
Chorus
Discomfort, endlessly has pulled itself upon me
Distracting, reacting
Against my will I stand beside my own reflection
It's haunting how I can't seem...
To find myself again
My walls are closing in
(Without a sense of confidence I�m convinced that there�s just too much pressure to take)
I've felt this way before
So insecure
Chorus (Repeat until end)
There's something inside me that pulls beneath the surface
Consuming, confusing
This lack of self control I fear is never ending
Controlling (Whispered during chorus)
Linkin Park - Crawling
AM I A HUGE RAY OF SUNSHINE TODAY OR WHAT FOLKS?
Thursday, July 23, 2009
These wounds, they will not heal.
Posted by Patyrish at 7/23/2009 07:45:00 AM
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19 comments:
Trish, I truly understand how you are feeling. I have a 6 year old that does not walk or stand and a 10 month old that is starting to take steps. And a 9 year old that I do not want to remember her childhood as being mom's helper. I too do not go out with the kids alone unless I have someone with me. We spend a lot of time indoors and that alone can really change your mood, especially in the Summer. Is there anyone that can go out with you while your husband is away? Does your daughter attend any type of summer camp? Just a few hours a day can make you feel like a new women! I wish I could help you out more, but I know you will find a way to overcome this challenge. Our road is a hard one and we should not have to travel it alone. Carol
No, you are not a ray of sunshine, and thank all the Gods for it. You are human, with real emotions, and enough sense to know that sometimes you are going to feel like craponastick. I have nothing to give you but good thoughts and prayers, but I do have plenty of each. Thank you for being so open and honest here.
Hey Girl!
I hear you loud and clear and understand what you are feeling. I am here for you if you need a new ear to listen.. :0)
I was watching the special features on the movie "The Haunting in Connecticut" the other night, and there was a thing about Momento Mori-pictures of people shortly after death. The expert was saying that now, we don't want pictures of our kids that die at birth, but like 5 years later we wish we had them just to so we could remember what they looked like. I think the reason we don't want that at birth (sometimes) is that we are not just losing our child, we are also losing our toddler, our grade schooler, our teen, our ballerina, her first kiss, walking her down the aisle...we lose all that too, in an instant, and it's painful. But we still have our kids, right? But after 5 years we are supposed to be over it, right? I was just saying last night that I wish Kiki could say just one word. Brian asked if I would rather have her walk or talk...I don't care, either. I would even sacrifice one for the other. Rambling now, and not helping, just lettin you know, again, that you aren't alone.
trish I'm so there with you.. emma is only 2 so i'm not quite were you are at. but we gotta just keep pushing. I try to talk myself into being happy she will be with us forever no broken hearts or proms..but we really know the truth. we can still love them with all our hearts but greive for what would have been. ps have you seen if she can qualify for vitalstim therapy. its helps people learn to swallow. i'm trying to get emma in it..huge hugs..
Trish,
I went through the exact same thing when Nathan turned five. I remember driving by a soccer field and seeing all these kids playing soccer. I started crying and couldn't stop. If things had been different Nathan would have been one of those kids and that we would have been the parents on the sidelines cheering him on.
I honestly went through the whole grieving process again when Nathan turned five. The older our kiddos get the harder it is for the rest of the world to see past the disability. We have to buy bigger equipment and it isn't as easy to get around. I think reality really starts to set in that you will be doing this for the long haul. It isn't easy.
Addie is now three and the only time we leave the house is for Nathan's Dr. appts. ,Nathan can't go out in the heat therefore neither can we.
Just know that what you are feeling is normal or at least part of your "new" normal. I hope you get to feeling better.h
Trish, I can't say I understand, b/c I have not been there, but it does not make me feel for you any less. I wish I were there to help you, I could take Kily and J for a while so you could get some time to yourself, or one on one time with them.
Oh I am sorry you are feeling down but of course you know you have reason to.
By all means switch up the meds - they can make all the differrence.
And listen to angry music, yell, pound the walls, break things, whatever works.
Or blog, we are here for you.
I will pray for you.
It's strange, this group we have. Mom's who are bound by our children's limitations. It hurt's so much because even in the utmost pit of that dispair, we couldn't love them more. They are our world and we wouldn't have it any other way.. but if only???
Don't be too down on yourself Trish, It's okay to mourn what we always wished for our children but could never have.
The lives we dreamed of, the hopes we created for them.
Like any period of mourning, there will be good days and bad. We just have to learn to take the bitter and savor the sweet whenever possible.
God Bless you and your beautiful girl..
You are one of the most amazing women I know.
I wish I could help you. I'll keep you in my thoughts and prayers
Thinking about you and praying for peace. This too shall pass but for now let yourself be down, angry, sad, mad whatever it takes to work out your feelings
Being cooped up in the house is the worst. This I can relate to. I have a 6 y/o with autism who is uncontrollable and will constantly dart off in public, and with a 3 y/o to chase after, it's impossible to take them anywhere alone when DH is at work. It has been like this since he could walk and protest the stroller/shopping cart.
As much as someone helping or taking over for a few hours can help some, it still doesn't erase the fact that you CANT do this. The same problems are still there when you get back home.
Stay strong Trish. I know it's frustrating. The bigger they get, the less you can try to hide their disability in public. By all means, talk to your doctor and get any treatment necessary. God Bless you and your family.
I'm sory you're having a really hard time right now.... this is the place to vent though, let it out. You are entitled, and you are honest and you are doing an incredibly hard job amazingly well. It is grieving, and it does go on and on - it changes but it never really ends. ((Hugs))
hey. linkin park fan myself. totally understand. my 5 year old cant hold her head up or sit up or say a word or swallow a bite. and then people arent very understanding when im having a hard time with grieving what she has lost because we chose to be her parents knowing her limitations. that doesnt mean that we dont grieve and feel bad for HER. sweetest smile on God's green earth my josie has. but sometimes just have to cry.
hello, you dont know me, but i stumbled upon your blog a bit ago and have been keeping up with you. i have 3 boys, 1 with high functioning autism, 1 not diagnosed yet, but im sure will be the same, and 1 who was born with congenital diaphragmatic hernia, he is 21 months, he has lung disease,pulmonary hypertension, small lungs, GERD,scoliosis, brain atrophy, had a subdural hematoma, has a gtube, is severly globaly delayed, etc.
anyway i just wanted to extend my thoughts to you. i am also on medication, and i wish i didnt need it, im on zoloft, i have been on effexor in the past but it didnt help. i hope you find something good. have a nice night.
First off, I appreciate your honesty. I can't relate but I sure can empathize. There are many things I seriously need to blog right now but don't feel comfortable doing so. Love and Miss Ya, janie
Trish, this was such an honest and open post. We cannot be sunshine every day!
My peanut is almost 6 years old. She doesn't walk (except in a gait trainer), doesn't pull up to stand, doesn't talk, doesn't eat by mouth. I thought I was over all the grief and accepted all of this. As she gets older, it gets harder. Seeing other kids her age (first grade) is HARD! I am the PTO president at my son's school, so I am surrounded by kids her age. It's really hard.
By all means, change up your meds. I have had to change mine every few years. We need to be happy and in control in order to be good moms. You WILL be sunshine again. And on the cloudy, gloomy, rainy days, we are all here to relate! :)
Thinking about you today. Peace.
we moms of awesome kids all go through those funks Trish! Hope today is a better day for you. :-)
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