So, I have become accustomed to candy coating most of what is currently going on in my life. I do this for several reasons: 1. It makes me feel better about my situation 2. Most people have no clue what it is I am talking about when I try and explain things 3. I am sick of getting the same response over and over again 4. I am tired of feeling sorry for myself and my family.
I cant candy coat things forever. It has finally gotten to me. I knew it would at some point. I was warned that keeping most of my feelings in would eventually lead me to bust and it has. My head is spinning. I am moody and to be quite honest, a bit depressed.
I almost never curse and every other word running through my head is fuck, fuck fuck.
My son is the light of my life. He is my soul. I love him more than life itself and would jump in front of bullets for him. He is what makes me want to get up in the morning. He is the reason I candy coat everything.
Who knew that when you gave birth to this little thing that appears so very perfect to you, so much could go wrong? Who knew that when you found out exactly what was wrong, it would make you feel worse and make you cry more than you ever had in your whole entire life? Who knew that 1 1/2 years after finding out your son was missing a piece of a chromosome and about 86 genes, you would still feel like shit every day and still sit crying?
I would never trade him for the world but it is getting harder and harder to mask my emotions for him so, I decided to write them all down in hopes that I might get a little relief for awhile.
I wish more people understood Connor's deletion, including myself, his doctors and people around us. I am sick and tired of people telling me "oh, I am sure he will catch up", or "well, he looks great". Yes, thank you for that but that makes me feel worse. He is not catching up and yes, I already know he looks great because he is the greatest and most handsome human being around but, he is not great. Poor guy has a tough life and never complains. I complain for him because I have NEVER had to do half the stuff he has to do and I never will have to. That is not fair.
It's not fair to wake up your son almost every day from a sound sleep to go to a three hour therapy session. It is not fair to watch your son fall OVER AND OVER again hitting his head crying in pain because he has horrible balance. It is not fair to have to strap your son into these god awful braces every night preventing him from moving his little legs to get comfortable. It's not fair that I sit here crying to the point that I cant see. It's not fair that my son is labeled as retarded and everyone else around me has these "normal" little children that can run and talk and play with toys without having to be told how to use the toy every single time. WHY? It's really not fair. What did I do?
Connor deserves SSI. He needs these benefits and/or the money to help us pay for the medical bills. I want to spit on the social security office. You have proof he is missing vital genes to live a normal life with out assistance and you still are making him go through test after test? Fuck you. He flunked your speech test, why do you need to make him go though a mental evaluation? You have the proof that the doctor labeled him as retarded (something that makes me cringe every day). Why do you need to make us go through a test to see what degree of mental retardation he is at? Don't you know that this bothers us and it's not fair? What else are you going to make this poor boy go through to possibly get the money and benefits he deserves?
I am sick and tired of my husband telling me everything will be ok. I am sure it will when I am done feeling guilty and horrible inside but you, my love, are not the person who takes him to these appointments, you are not the one who goes to every therapy session. You don't have to wake up your son to take him to PT, OT or speech. You for some reason have a fear of driving and make me, your wife, wake up and take you to work every day. When the hell do I get a fucking day off?
I cant do this anymore. I cant sit here and tell myself everything is ok. I don't want Connor in special education. I don't want Connor to wear braces. I want Connor to talk, to run, to not fall, to have a normal brain, to not see hundreds of doctors and I want those 86 genes that he is missing back. I want to know why this bothers me so much and why it bothers me when people tell me it is ok. It's not ok. You don't have to do this everyday and you don't have to feel the guilt of knowing this is not fair. You don't have to look at your son who never complains and wish that he knew another type of life.
It is not fair.
I am sorry for the rant and I am even more sorry for my profanity. I will be keeping this post up only for a few days until I feel better. The goal of this post is to help ME. The more I read it out loud the better I will feel.
13 comments:
I like the profanity - you are a real person and thats the point of a blog to get it all out there. You are an amazing mom to an amazing little boy!
Sarah, you mean so much to us. I honestly think that people say the cookie cutter things to you because they wish they could take all of this pain away from you and give you guys the life you deserve. It isn't fair. None of it. You and your family deserve so much more than this.
But you are so inspiring to each and every one of us. I think about the talk you and I had a month or so ago about how you stay afloat. You gave me hope. If you could, then I knew I really could. Everything we do is for the love of our children, and you love Connor so much each day (though you have to share him a little, I'm madly in love with that kid!). There was never a luckier kid to have such a great mom. Here for you if you want to scream, cry or laugh.
And no worries. I'm ashamed to say I'm a cusser. I really should cut that out.
Profanity is okay. It keeps it real.
First of all, when I read this it made me cry and I'm still crying. Lots of reasons - wish I could make it all better and I wish I could say the perfect thing. But the reality is, I know it sucks. And it's not fair.
What I do know is something that carried me through the relatively small difficulties I've endured in my life - every pain has a purpose. And it's pretty darned hard to see right now what that is. If nothing else, someday you are going to meet someone else who has the exact same issues as Connor and you are going to be their rock, because you know exactly what they are going through. Secondly, your story is a beautiful one of unconditional love. It's so hard and so unfair on so many levels what you're having to endure, but it's such a beautiful picture of unconditional love. That's how you love Connor, and that's how we love you - both of you.
I don't know why this happened to your family, but great things come out of difficulties.
I didn't mean to turn this into a pep talk... what I really wish is that I were there with you and we could hug and talk about this. I love Connor, and wish I had the power to give him what he needs without making him go through anymore.
I can't believe that it took you this long to use profanity! I would have been using it a long time ago! You deserve to get it all out there and how ever you need to do it, is the right way to do it. You know that Connor holds a special place in my heart. Not sure what it is that your little boy has, but he sure makes an impression! I wish I could give you a hug and be there for you to just talk and let it all out. I promise that I will not say it will be ok or anything like that! You really are amazing for all that you do and you deserve to feel like you do!
Oh sweetie I love you all of us mommies love you we have all told you we are here for you anytime!! If Venting is what lets you feel better do it!!! I know I have not said much over the last two years about Connor because I don't understand like you said, I don't know all that you/he goes thru. I wish I was there to help you as all the mommies do! I know none of this is what you really wanted to hear. But I wanted to remind you. You might be alone in the RL but not here this Family MM08 has your back emotionally any time you need it. As for swearing I do it all the time Hubby hates it and tells me I am low class for doing it but it makes me feel better, so I keep doing it I dont care!! Now what can be done about you and how can we help?? What is this about your hubby not driving and that you have to drive him? OH hell does he know how much more weight he is adding on you? Ok I am ready to kick butt which way to the ssi office!! I do know that they turn everyone down at leased once so keep fighting it! I would like to know one thing I can do for you!! One thing that would help you. Do you have a hobby other then taking care of your family? Is there family that can watch Connor so you can get away for a little time for yourself? please let me know what you need the most or even something small what ever I want to do something for you because you are such a role model to all of us!! I know we all complain that we are sick of the terrible two's and stuff but what you have done has been grace-full you have not complained and for that you deserve the Mommie of the decade award so what can I do for you??
with my love
Jojo
If anybody deserves to drop an f-bomb it's you! I can't say anything to you that hasn't been said already. What I can say is that you don't need to candy coat anything for us - we may not really "get" what's going on with Connor and with you, but we'll be here for you both through the thick of it. Swear at us, cry at us, laugh with us, we're here for you because we love you and we love Connor. <3Kelly
How much do I understand you!! I am there right there with you. I may not have children that are missing genes but I have two children with such mental disabilities that I been throught the OT, speech and waking them up to take meds and go here and there. I THANK YOU for letting this out!! YOU NEEDED THIS!!!! Now you can start with a new day a new plan and though life is not fair and we wonder why we were chosen to be mothers to special children is because we are the ones who can handle it and do what we need for out children.
Let it OUT when ever you need too!!! don't bottle it up!! You are such a incredible person and mother and Connor loves you. None of this is your fault. You have blessed us and I am sure you are blessing Connor each and everyday!!!
i'm so sorry sarah. i can't imagine what you're going through. i'm glad you're letting it out though. sometimes it helps to go a little crazy. we'll always lend you an ear.
xo
As I sit here with my eyes spilling over with tears, I want to thank you for sharing and helping me be a better person through your experience. I don't profess to know what you are going through, but the feelings that you describe, yes, I have felt those too in different situations and can relate in that way. I know the fact that you are a strong person does nothing to change all of the feelings, and legitimate ones at that, that you feel. But I still commend you. I would also ask you to consider leaving up this post. I know it was cathartic for you, but it was for me as well, and I know it will be for others as well. Big hugs to you <3 Kelly
Thank you everyone. I thank God everyday for Connor but I also question why more often then I should. He doesnt deserve this and as strong as I should be or need to be, sometimes I just feel like I cant do it.
You make me feel that I can do it.
On days like this when I feel helpless and weak I am so greatful for Jacks Big Music Show and PBandJ
:)
Sarah-OK-I'm done crying and can now comment. This is beautifully written. Let it out mama. It isn't fair, it sucks ass and you have every right to scream "FUCK" from the rooftops. I will not pretend I have a fucking clue what you are going thru-but I will try to appreciate what I have just a little bit more. I wish there was a wsy for you to get a break but as moms I know that is unlikely. Keep venting. We love you.
Sarah - I don't think there is much that I can add that hasn't already been said. We love you.
Sarah, I am going to say a prayer for you and Connor tonight. I can only imagine how difficult it is to watch your son each day and wonder why. Connor is a lucky boy though. He has an awesome mom. I admire you for walking through your life with such grace and dignity.
I'm sure you've already thought of this, but just in case you haven't, I'm going to throw it out there. Have you tried finding a support group either online or in person for other mothers of children with disabilities? Maybe it would help to be able to talk to other people who have a better understanding of exactly what your life is like.
Love you!
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