I don't know what it is that I'm suppose to do but I will tell you that since that morning, my life has changed completely. It's changed forever and the hardship is only going to get worse.
Everyday I mourn the "normal" baby I thought I was carrying in my belly. That will never go away. Please don't tell me it will because I know it will not. Would I change things? Absolutely, in a second I would change things. I would want a normal healthy Nathan. I'm not going to feel badly for saying that either.
Every day that I see a child that is two, I am reminded of what could have been. My heart aches when I see children eating and indulging in cakes and yummy treats, because eating those treats through a feeding tube defeats the purpose of having treats. Why can't my son enjoy treats like everyone else?
So here it is. I'm not going to sugar coat it. It's ugly and that's just how it is:
RTS SUCKS!!!! You hear me? It sucks.
Unless you have a child with this you can't possibly begin to imagine what it's like, so do me a favour and don't even try and for God's sake quit putting me on a freakin' pedestal!
I don't deserve it. I'm only doing what a mother should do and that's love her child unconditionally. My child has needs and it's my job to get up everyday and make sure his needs are met and that I love him and help him in anyway I can each and everyday.
I'm allowed to be sad. I'm allowed to be angry and I'm allowed to wish that my son wasn't like this. I don't need anti-depressants, I don't need counseling (talking to someone who has no clue what RTS is isn't going to help me because they won't get it and I really don't have the time or the energy to try to explain it to them!)- the reality is that this is hard. It's hard on me, it's hard on my marriage, it's hard on my daughter.
Nathan will not outgrow it; ever!
Every day I'll have to fight for him because no one else will.
Every day I'll have to continue dealing with the reality that he may never eat orally.
Every day I may never hear my son say, "Mama" or "I Love you."
Every day I will continue to hurt and mourn the loss of my "normal" baby.
He wasn't supposed to be like this. This wasn't supposed to happen.
I'm really pissed off about this!
To Janet:
You have been my rock through all of this and you continue to be there for me and my family! I could never have made it this far without you and Matt. I love you both so very much. You stood by me in my hardest days. You cried with me, you worried with me, but most importantly you listened when I needed an ear. You never treated us any differently and you never treated Nathan like a special needs child and for that I can't thank you enough. He's just another kid to you and that's the best gift anyone can give our family. Love and acceptance when I perhaps wasn't feeling it.
To Janna:
You too have been my rock. Learning to care for Nathan when everyone else seemed afraid. Calling and checking in on us when you hadn't heard from us in a few days and just being the friend that you are. Thank you
To my RTS family: You truly get it. You are walking in my shoes everyday and you struggle alongside me. You feel my happiness and my pain. We worry together and laugh together. THANK GOD for the Internet. I can't imagine my life without you in it. You are my support group and I love you.
Christine,
ReplyDeleteI get it. I know your feelings, I have them too. I am here if you need me.
I love you too.
Myssie
I'll hold your "cyber-hand" as we walk this journey together. It's never easy....but for me it has become easier. I definitely have high times and low times too. It helps me to know that others have the same feelings that I do at times. Hang in there:).
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ReplyDeleteThe feeling of helplessness, and the lack of works to formulate sentences of poetry, consume me. All that can be said, is I love all of you.
ReplyDelete"I love all of you"
Pat
As I sit at the computer and read your post, I am crying with you. I know for me somewhere in my heart I will always feel sadness too. I still look at a child that is Noah's age and get a lump in my throat. Sometimes I wonder if I am too good at masking my feelings. I know how you are feeling and I only wish we could meet in person. Yes, RTS does suck...
ReplyDeleteMy sweet friend.....I know your anger, and heart ache. Feel surrounded by all of your RTS family. As time has gone on for me it hasnt gotten easier, I just look at it differently, but its stil hard to see those typical kids doing typical things, and eating is hard, the hardest for me right now.
ReplyDeleteThinking of you....your equally (incapable but willing to do anything for my boy) frined!
I cried as I read your post. The feelings you described are so real to me. I wonder if I will ever get over seeing "typical" children without feeling a bit sad and hurt. I hope I do. The RTS family has made things so much easier for me. They get the feelings I have! I feel like I am not alone. Thinking of you! Kelly F
ReplyDeleteWe are here for each other!Just when things look pretty bad I know that I can turn to an RTS friend. It helps so much to know you are not alone.
ReplyDeleteIt is ok to feel the way you are feeling. Thanks for sharing. People need to know the good, the bad and the ugly!
Kelly W.
As others have said better, we all go through these feelings. I remember a parent of an older teenager on the listserve said it never ends, but the sadness comes less frequently. That helped me accept the sadness I have, and by accepting it, I have also been able to move past it. I have hope that in 2009 it will be even less frequent, for you and for me and for all of us.
ReplyDeleteHugs and Happy New Year!
I hear you very clearly. It definitely resonates with me. I'll be praying that your sad times come less often and you are able to focus on the sunshine of what is. You have my support.
ReplyDeleteHi Christine, For some reason my blogreader didn't pick up this post until now???? So sorry for the delayed response. Sending you hugs. I too join with the others in sharing with you the sadness of what Matt may not be. Grief is a funny thing because it sneaks up unexpectedly. Sometimes I will see a kid playing or running in a shopping mall and next thing I know I am feeling down about Matt. Sometimes I am hanging out with my friends and their kids of same age as Matt and feel fine, then other days I am so aware of the differences that all I want to do is to leave and go home and just be Matt and me - where I can't compare him to "what he might have been". I never know when that down feeling will "ambush" me. I am learning to appreciate the periods in between those down times when I am feeling content - I try to absorb all the goodness from those moments so that I have something to draw on during the tough times. HUGS
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