I am struggling. I have no shame in admitting that. I know lots of folks like to hide their struggles and keep secrets, but you can't learn from nor find comfort in secrets. I would rather share my ups and downs in hopes of comforting someone and letting them know they aren't alone. Because sitting where I sit, life feels immensely lonely. So I choose to share because like I said nobody learns a damn thing from keeping secrets. I have no time or patience for ideological fronts.
I live in a place of anxiety and fear riddled with guilt and shame; all over my child and his health and my tortured heart over living this life. Because I don't want this, and saying that makes me feel like a monster. I want to run away every damn day, which makes me feel guilty as hell. But despite the urge to run, I love my kid to pieces and I am loyal, so I know I can never run away. I stay and I fight like hell for him. But that doesn't leave me feeling any less guilty for wanting to run. I have overwhelming anxiety daily knowing that our story is going to go one of two ways: A. Clayton lives a relatively long life always in need of medical assistance or B. One day he loses all of his battles and I have to watch my child die. Both of these options suck. I know I am suppose to say option A is what I want. And it isn't that I don't want A, it's like choosing between shit and crap. Lose my child or spend many years watching him be poked and prodded and tortured through exhausting medical ordeals. Neither is ideal. They both suck. My heart hurts. I constantly feel guilty because all I want is peace, but a peaceful life with Clayton means a life without Clayton. I fear the future because I know no matter which path it takes, it will hurt. It's this nasty circle of constant guilt, shame, fear and anxiety; because no matter what I think or feel there is never a good answer. There is no right.
And while I have been suppressing these things and thinking them to myself and silently struggling with them for years, someone dared to point out the other day without realizing what they were saying that I would likely one day watch my child die. A doctor pointed this out. I told him it was ok. I told him I knew that. I tried to make him feel better for his slip. And why? He just said the thing that haunts my mind and tortures my soul every day and I was sitting there trying to keep him from feeling bad for saying it. That is my problem. I focus on the wrong things allowing all the things I should be focusing on to build up until I begin to reach my limits.
My kid is sick. He hasn't gained weight in a year-maybe more, his urine is usually discolored and his kidney has already acted up once this year, reminding us of the looming transplant he will one day need...oh and for the second time in his life he has a nearly 100 degree curve in his back just daring to cripple him. I live in fear everyday, never knowing what day will be the worst day. My stress has unfairly taken over my body in such a way that my emotional anguish has begun to present as physical pain. Daily pain. It's as though my anguish is slowly and pain-stakingly squeezing the life out of me each day. How appropriate that my insides and my outsides should coordinate with one another.
We have a natural fight or flight response. My situation breaks every law of that natural response. I am both compelled to run and willed to stay. I want to run every day because this wasn't the life I wanted, but as I said, I know I will never leave; and oddly enough despite the struggles, I love my life. I love this sweet boy so much, I will always stay. I will stay and watch him get sicker. I will stay even though it has all began to physically hurt me. I will stay because I am his mother and as much as this life has brought me pain, it has also brought me a beautiful boy and I rock at being his mom. I don't know how long my life will continue on this way, but what I know is the pain is not letting up. The fear is growing stronger. And the anxiety is like an overbearing parent. I don't know how to watch my child's body betray him and yet I am forced to. I am forced to watch because right now what he needs he can't have until he gets much worse. So I must watch him deteriorate. How? As a parent, how do you just sit and watch your kid get sicker and sicker? I truly don't know. All I can say is it is unbearably painful and yet you are forced to find a way to bear it because your child needs you.
They like to say "God never gives you more than you can handle". I call bullshit. I'm all about God. I get that I am weak and He is strong and I cannot get through life with out Him. I get that and I believe that, but when it comes to that saying, I call bullshit. What I could handle ended some time ago. I am now in the stage of trying not to die inside. At the very least, I am trying not to be crippled by my pain. It takes a concerted effort to get through each day right now. That's sad. It is sad that I have reached a point where every day requires so much effort to stay afloat. I've begun to talk to a counselor just so I can have some one to say all those things to that I otherwise keep inside. Those things that bog me down. My doctor, someone I have seen since I was a kid and someone I trust and respect prescribed kickboxing. Something to get it out of my system so to speak. That same doctor is the one who made the slip. And the one who commented that my situation sucks. He's right. Maybe admitting things are really tough in every way and no longer trying to act like things are mostly ok and maintaining this "I got this attitude" is what I need. It can be hard to break patterns though. I come from a family on all sides where for the most part you keep things to yourself. So the concept of truly being open about my struggles, my strengths and my weaknesses is not the example that was set for me. But it is the example I wish to set. I know through life with Clayton that being open is both how you learn and how you teach valuable lessons. I have benefitted from others being so raw and I wish to live in that same way. That is the point...I wish to live. I wish to live. I wish to laugh. I wish to learn. I wish to love. I can do none of those things effectively while my heart is quietly harboring my pain. So now it is time to begin to heal and hopefully cope better in the future.
Today I turned 29. I'm determined that my 29th year will be different. I am not afraid nor ashamed to admit that I am broken. I am proud of every step of our journey, but it has been a journey one cannot escape without scars. My problem is that my scars have not yet healed and that I have had to sacrifice who I am to be Clayton's mom in more ways than I can count. So this year I am going to heal and I am going to get back to being me. And while this blog is about keeping up with Clayton, it is also going to be about my journey. When you have a sick child, you can never imagine the ways in which that will change you. Clayton's struggles have broken my heart not only because they have meant his pain, but because they have stolen my time. Years of my time. I just hope and pray that I have plenty of time left to make up for what as been lost. I hope to make up for lost time through new adventures with Clayton.
I had multiple conversations today, that included people telling me not to fret about getting older, etc. I want to make this point abundantly clear:
I am honored to be growing older.
Every day with which I am gifted and every birthday that comes to pass is a luxury. I am excited to grow older and I don't care how many wrinkles or sun spots or whatever that may include.
I have no doubt growing old can be hard. Not doubt. However, it is a gift that many do not get. It is a gift to watch your children and grandchildren and great grandchildren grow. It is a gift to grow old with your spouse. It is a gift to watch your hair turn gray or white. Crows feet are a gift. Even the aches and pains of old age are a gift. All of these things mean your here. It's means you made it through another day, you went to sleep and even if you woke up feeling like crap, you woke up! So I am thrilled to be gifted the time to grow old and happily accept anything that comes along with that as everyone should be. Too many people have their lives taken at a young age and never see the gifts that come with growing old. So I am ecstatic for every birthday of mine that comes to pass.
And in case my rambling caused confusion I will set the record straight... I suffer from anxiety, not depression...there is a difference. Despite our struggles, I love my life so damn much I live in fear I won't get to grow old in this life. I want to live and I want to laugh and I want to learn and I hope to do it all with Clayton. And I am going to spend this next year not just sharing Clayton's journey, but my own journey of healing.
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