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!
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.
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.