Saturday, April 2, 2016

My secrets are my life

As I sit here in an empty house: a quiet house: a clean house, I find that I have ample opportunity to think, to reflect on who I am, who I want to be, what I do well and what I could change. Sitting here in my solitude I discover things about myself that I've kept hidden, some things that I've been open about, some things that hurt me, some things that I'm proud of. And I realize this one vital part of who I am..... I am HUMAN. I am who I am. I am beautifully emotional, even complicatedly so. I am messy and organized. I am a daughter and I am a mother. I am a friend and an enemy. I am kind and I am not. I am flawed: perfectly flawed. I am loved and I am not.

I have spent the majority of my life apologizing for who I am, trying to change the things about myself that make me unique. Being emotional and intuitive has never won me a plethora of friends and relationships. BUT it has won me lifelong friendships, loving relationships with family, and a marriage to my best friend. It has made finding my place in a new family incredibly difficult. BUT it has dealt to me a sixth sense, a way to decipher who is for my good and who is not. I can't remember a time when I didn't have that gift. That's not to say that I've always used it, but it's always been there.

People either hate me or they love me. With almost complete certainty, I can say that this is completely true. Some people really don't like me. I've endured bullying and unfair criticism in my life. And that's okay. Because for every person that hates me there are 5 more that love me. You can't win over everybody in your life, everybody that you come into contact with. You're not meant to. I'm okay with that. I've learned wonderfully valuable lessons from those that have expressed dislike for me. Namely, how not to treat others. But the greatest lessons that I've learned are from those that love me. Unashamedly, I will admit that I am not always easy to love. Yet those that love me are still here. Because of this I have learned that you don't give up on those that love you and that you love.

Every single day is a struggle for me. On any given day that you see me I may be ruled by the amount of physical pain that I am in. I was 10 years old when I started hurting, 14 when my neck problems were discovered, 15 when I had my first cervical fusion, 21 when I had my second, 27 when I had my third (just 2 months ago). Some days a smile is harder to give than almost anything else in the world. But I try to do it anyway. Some nights when I go to bed I wonder how long I'll have to deal with agony of being trapped in a body that, at times, feels downright torturous. It's been 17 years since it started; it's been 5 since it got to this current level. I hope everyday that this last surgery will provide relief. There have been days since January 29 (my last surgery) where my pain has been as low as a 3 on that annoying scale that they give you. Before the surgery I didn't think that was possible, or ever would be possible again.

My daughter has special needs, that is, she has down syndrome. I never knew how much that would define my life until recently. It is my night and day; it is what drives our lives; it is who we are as a family. And I need to shed some honesty on this life here. I'm struggling. Don't get me wrong, I love her DEARLY. But guys, I'm tired. I watch as our 18 month old catches onto things that Kloey still doesn't understand. My heart skips a beat when he calls me Mama and she still doesn't. It is bittersweet when he learns something that she has been working on practically since she was born. I cry. I feel alone. I wonder if anyone else feels the way that I do. I've never known a time alone with my husband and when I look forward into our future I realize that I never will. We will always have Klo. I know that and I accept that. But is it selfish to say that sometimes the idea of that just exhausts me? Am I allowed to say that? The endless therapies are draining. And while I know that she is growing, that she is learning, it just seems so slow, so tiring. And it breaks my heart. I watch her day in and day out struggling more than any other child just to learn something as simple as holding a spoon, or walking backwards, or climbing stairs. She will be 5 years old this summer. She is repeating pre-school. And that is fine because that is what she needs. But, my goodness, those IEP meetings are so overwhelming! They hand me this piece of paper that says something about scores and averages and all I see is that Kloey is 40-60 points below the average child. As they keep talking and talking and talking I just keep thinking, "STOP! STOP! STOP! She works so hard!!! WE work so hard!!! How is she so behind? Why is she so behind? Slow down and tell me what she does WELL!!! Tell me what she does right! Stop telling me that she is behind. Don't you think that I know that?!! Don't you think that I see that every single day of her life?

And while I focus so much on all of that I realize that my other children keep growing, keep learning, and that someday they will be gone. And I find myself wondering: do they know that I love them? that I would do all of this for them if they needed it? can they ever understand that sometimes my exhaustion comes out as impatience? will they ever see what this might have been like for me? do they know that I want to freeze time? to stop everything just for one moment. Just to look at them, smell them, run my fingers through their hair, and hold them as tightly as I can without suffocating them. Can they ever know how big of a piece of my heart each of them has?

For everything that I have learned in my life, everything that I have accepted, I still cannot accept that I might be a good mother. I make too many mistakes. I feel overwhelmed so much of the time. I am so flawed. But every day I vow to do better. Tomorrow is a new day. Today turns into yesterday. Yesterday turns into a lesson. And before you know it, your life is full of lessons and full of yesterdays and today is just a new addition to your reality.