Sorry I haven’t posted in a few days….I have been going on the philosophy of… if you can’t say anything nice… don’t say anything at all. To be 100% perfectly honest there comes a point when you cannot see the light anymore. Every day is a new disaster or struggle or pain. You keep thinking eventually it will get better and you hang on for that one day… until the day you hit the wall and realize that your “one day” is nowhere in sight. I was watching Grey’s Anatomy (the ONLY thing I even managed to get to watch on TV anymore…) and Meredith asks Christina… “Are you in the dark place? ” I wanted to wave my hand and say … oooh oohh!!! ME ME!!! I am… can I have the sparkle pager??? LOL As stupid as it sounds you get to this “dark place” and even Xanax doesn’t help. No matter what you do the sun is not bright… every new turn in the road leads to something more horrible than the last and you really don’t even want to know what is ahead because your NOW is hard enough to deal with.
I took a nap today and I was laying there on my way to sleep thinking of what it is that has changed in the past few weeks that has caused such a change in my being. How did I just wake up one morning and feel like life sucks… and become pissed off enough that I cannot even laugh about this stuff anymore. Every time I go to laugh, tears involuntarily fall. I feel this weight in every part of me, my head, my body, my heart, my life, my home, and now… even my business. For the first time EVER I had an OFF day at a wedding. I normally am able to show up to any shoot, shake off the day and get wrapped up in the moment of the day, the stresses of life melt away…. but not this time. Everything I LOVE about weddings has turned to sadness. I literally have a complete emotional breakdown during every father daughter dance… I sit there thinking to myself… GET IT TOGETHER and no matter how much want to or NEED to.. I just cannot push myself any further. Its like I hit a wall that is a mile high and I have banged my head into it long enough that I broke myself… I knew it would happen sooner or later.
So in thinking…. I tried to pinpoint that one thing that seems to have “broken” me and it hit me… somehow I have lost all hope. Hope is such a delicate and true thing. I never imagined a day when my hope would be gone. But it seems that every shred of it that I had has been beaten, crushed and pulverized right out of me. For a year and a half of Ky’s life it never occurred to me that she would NOT be normal. I was under this assumption that after we fixed her butt and spinal cord and heart that she might have some maintenance meds and some laxatives and that she would be fine and dandy. I was ok with that because no one would ever KNOW what she had been through. I told myself that she could wear a one piece bathing suit and no one would see her scars and that she would never have the stinging pain of having to EXPLAIN herself over and over again as to what is WRONG with her like I have had to.
Because I have to tell you… its hard. I almost wish that people would just ignore that she is even here because people ask in passing… “so how’s Kyleigh” and I honestly have just started lying and saying…. “oh she’s doing great… she’s just complicated Kyleigh- hah hah” because it kills me. And its not that I don’t want to share but people seem to be in pain whenever I try to explain to them what is wrong with her and I get through VACT and usually by that time they are done and just say… oh wow. You know that they cannot comprehend and really they don’t WANT to know even if they DO. They want you to say something like “she has cancer or down syndrome…” something they understand and can comprehend. They say things like … “oh I am so sorry”… “that must be hard”.. “let us know if there is anything we can do to help”. And you know my responses have gone from a patient smile and thank you to… “yeah well I am sorry too… sorry for her because SHE didn’t choose this… and neither did the rest of us.” or my response to “that must be hard”… “yup… its harder than anyone will ever know… most days it SUCKS… and I hate it…”
As happy as I am that Ky is still here and relatively unscathed by it all, another part of me knows that all too soon she will realize that she is not like everyone else. She will come to understand that things hurt and she hurts and she will long to be “normal”. And what am I supposed to tell her. That is OK? Because its NOT OK. Do I tell her that she is strong… she can do it… just go to school and ignore all those stupid pricks who call you name… don’t FEEL the STARES and don’t think about what people SAY.
And then the thing I hate the worst is when people say… “this will make you stronger… god has a plan.” Well u know what… if THIS is his plan. I am no longer a fan of His. And maybe tomorrow I will wake up and feel better but right now I am just PISSED off. I am made and angry and all sorts of unhappy about this whole thing. This life that we are being sucked into. The choices that we make that NO ONE should ever have to make. I am just pissed and I have every right to be. I fully believe in OWNING my emotions and I own this. I truly do. Ky’s second birthday is coming and all the perfect party plans seem to be fading away as fast as I was making them. Money is tight, time is running out, things are not going as planned…. and even the things that I USED to be able to provide for my kids… little pieces of normal are gone. It is the most awful feeling in the world to be here and know that there is nothing I can do to make any of this better… I am helpless and hopeless at this point.
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Keep writing…it helps.
I am reading and praying.
Me, too. Praying. Keep writing.
I know exactly what you mean about people’s questions. I don’t know when it happened but at some point I realised that people who were asking didn’t *really* want to know…they’re just asking because that’s what they’re supposed to do. They don’t want to turn around and walk away from you thinking, “Gee, what a jerk I am for not asking about her kid.”
And you stop answering truthfully because the truth hurts and it sucks and the last thing you want is to suck anybody else down into the pit of hell you’re living in.
Dude is right. Keep writing. People who truly care about you and your family will keep reading here and will support you. If they don’t want to know the truth, then they can simply not read. Write the truth here. No pollyanna. The truth.
At the very least it helps me to read it and know that I’m not the only one who gets dragged down by this crap.
Amber,
I have been reading your posts for the past few months, and I feel as if I am reliving my daughter’s life through you and Ky. My daughter has many of the same issues that Ky does. I had many of the same fears that you have. Sometimes I still have them, but it has turned out OK for us. I am hoping and praying the same for you. You are strong and Ky is strong. Those are the two most important parts for your survival. Many times it will feel hopeless and no matter what people tell you that it will get better it won’t feel like it. No one can experience what you are going through unless they have been through it. I know the pain and I hope you pain subsides. Allow the tears. It’s OK. My daughter is now 8 and things are better. She is OK. Her OK is not like everybody else’s OK, but she is OK and that is good enough. There are many options to help you and give you some relief. I am hoping that some of this helps. I hope today is easier for you!
I am a firm believer in owning your feelings also. This is what you feel right now and there is not a damn thing wrong with saying it!! Get it all out, that is what you need to do. I envy your ability to just share everything that is on your mind. If only I could… I am always afraid of what people will think. As always, we will be praying for your family to make it through this time. ((HUGS))
Kristin and Gavin
We Heart you Amber. Keep writing, I think it helps all of us to see some of our frustrations written out so eloquently. You have a great way with words and no one here will ever judge you for your openness. Many many prayers coming your way.
Hi,
I’ve been reading your posts for quite awhile, because I have some of the same issues your daughter has. And the other people who posted are right…it DOES get easier. And there are good people in the world, who want to help and who care about you and your daughter. And don’t get too upset about your daughter’s future…yes, she’ll realize that she’s different. But different doesn’t mean bad. With the support from such a strong, loving mother she’ll get through. Kids aren’t as bad as they seem sometimes…for every mean child in the world there are a thousand nice, caring ones, who will accept your daughter and love her for who she is.
Own those feelings, and let yourself feel it. You deserve that.
But you cannot allow yourself to
get sucked under by the riptide of
hard hits you’ve taken lately.
Is there any way you can take some sort of weekend off and chill with friends. Even God needed a rest Amber, so do you.
I hope today (Wednesday) brings you some smiles-let me know how your “angel” helps you out today
Amber, praying for you and your family. Please keep writing. Lots of folks truly do care about what’s going on in your life. It also helps us know how to pray for you.