What kind of day you ask?
One of those days about self pity. One of those days where you feel alone. One of those days where you just feel you can't go on anymore. One of those days that everyone bothers you. One of those days where you are jealous about what everyone else has and you don't. One of those days knowing that no one really understands what you go through.
I just had ONE OF THOSE DAYS!
Let me explain.
Before Joey had his accident. I had plans, I had dreams about my future, I had things I wanted to do in life, I had MYSELF.
As soon as Joey fell in the pool. the universe hit a bump and I fell out of the wagon. Other family members and friends fell to, but they still held on and were able to climb back in. I was never able to get back in the wagon. I had to gather up all my emotional strength and physical strength and had to go on a journey by myself. Well not completely by myself. Joey fell out to. He also couldn't get back in the wagon. The Joey that was traveling with me was severely handicap and had to overcome even more then I would have to overcome. So I'm on this journey with a 35 lb pack (Joey) on my back. My job on this journey is to protect this 35 lb pack., to make sure it was safe and healthy and always happy. It didn't matter so much what condition I would be in, as long as my pack was safe.
During my journey I still had to be a regular wife and mom and friend and family member. The chores still had to be done, the school work needed help, the money had to be made and the bills paid. Decisions about my other kids future and the future as a wife still had to be decided on. However, I did have some help with these decisions. My husband would jump out of the wagon here and there along the journey to help, but he still had his dreams and passions to pursue, so back in the wagon for him.
As I began to take a few steps on my journey, I felt the weight on my back, but the journey was fresh and I had the energy to take off . Slowly as the journey gets more tedious, I began to struggle. However, I have learned to smile and laugh again. So now as I am walking I can laugh and joke. I learned to slow down and enjoy the scenery. I am able to decide what paths are best to take. Each decision I have to make on a new path or to step over or walk around a new boulder is just as stressful as when my journey began. My decisions are solely my own to make. Every once in awhile I see a wagon with family and friends on it. Sometimes they will hop off for a second to pat me on the back and say encouraging things, or give me advice. But what it comes down to is I'm all alone on this journey.
What bothers me the most about my journey is that no one asked me if I wanted to take it. I always felt that I fell out of the wagon. Maybe God thought I was the strong one, maybe I was the one who could handle this better then anyone else in the wagon. As time goes by I learned that I was pushed. I didn't have a choose. Someone made that decision for me. I had to figure it out myself. Everyone in that wagon kept on going. They still had their dreams and hopes for the future. There decisions about the future weren't solely made by the pack they were carrying. They could follow their dreams and if they made a wrong decision or a decision that didn't work out they knew it won't effect the very delicate 35 lb pack. (Now, I'm not talking about a regular family with kids who have regular decisions they have to make about their children or their financial being or their jobs or their regular lives, because I still have to make all these decisions also, I just have to do it with a 35lb pack on my back.) Don't get me wrong. I would do anything and everything to make sure my 35lb pack was cared for perfectly. That it felt loved and was happy and even if it didn't care or realize, that my pack would get all the chances in life to get back on the wagon.
Along my journey with no final destination insight, ever, I began to lose myself. Lose who I was, who I wanted to be, what I wanted to do. With no relieve from the stress and never able to catch up from the tiredness, I have very little left of my self. I don't belief that I will ever completely lose myself, there is always a piece of myself deep down inside the 35lb pack I'm carrying. I also believe that one day as the 35lb pack begins to climb back onto the wagon that maybe he will take me with him and I can have the chance to refocus on myself. That I can pursue new dreams I have. The dreams and passions and future that I once had when I was on the wagon are forever gone. I say forever gone, because my 35 lb pack now gets a say in my future. Even when my 35lb pack gets back on the wagon I still have the job to make sure it is safe and happy. He will ALWAYS need my help in making the decisions about life, which in turn means I will never be able to fully get back on the wagon, however I will settle for just hanging on for the ride.
I am tired of walking, but each day the 35lb pack gives me the strength to keep one foot in front of the other. Some days I even have enough strength to run.
THE JOURNEY IS EVERYTHING! I have to make the best of it, so I keep on trekking.
8 comments:
Amen to that sister - there are many of us on the same journey, at least - thank goodness.
I feel you. It can be so isolating at times. My pack is up to 85lbs. It's a good thing I am an athlete and enjoy a good work out to get that endorphin high. At least my physique looks fantastic. Too bad I have little time to use it to attract another mate. You will get better with Joey going to school. You will get some of "YOUR" time back which we all need. The story of the goose that lays the golden egg. Have to take care of the goose or no more golden eggs... :)
Julie, I find you to be a very strong and dedicated mother. I don't believe Joey could have ask for anyone better to be on this journey with him. I can not imagine what it is like to walk in your shoes day in and day out, but that little man is VERY lucky to have you, and you to have him. Just remember I am around the corner if you need a break or a drink!
Leah
You're the only person I've ever met who could handle the journey and the pack... and the challenges and disappointment... and stress... and still be normal. We love you.
I totally understand about losing yourself and feeling like you are on this journey yourself. I have a daughter who is 2 years and 4 months old who has cerebral palsy/epilepsy. Her seizures are almost controlled with the ketogenic diet but her mobility is still so behind in development. I feel like no matter what I do, she will never get better, and the guilty feeling lasts forever. Thanks for sharing!! I am from Rosemead, CA and read your blog from time to time. Please know I can relate to your feelings. Its so hard to wake up every day and take on the challenges of being a special needs mom. I am so afraid of the future but I can only live one day at a time. Otherwise, I will get a headache. Blessings and may your days get brighter and better.
Nicole
Julie. This was so beautifully written! And so true. I go through those days. We all do. We understand and it is totally okay to have these days. I was told it isn't... but it is so great to put it all down and then pick yourself up and keep on going. Joey is amazing. You guys are inspiring! I wish your garage sale was going on when we were there!!! I should see if I have anything worth bringing for you guys.
You are doing awesome. You have a lot to fall back on but we all understand. My wagon left me too.
PS.. I am jealous... I miss 35 lbs! Santana is 44. =)
I know what you're going through. I understand. It's sometimes hard to keep any inkling of yourself at the surface because you are now and forever a "special needs mom." It's okay to have pity parties. I have them and I sware that it's my last one, seriously. But, alas, others are on the horizon. Sometimes I wish I could just go to sleep and then wake up when Christian is better. But it really is the journey that's important. At least that's what I'm told. :)
Julie, you totally explained exactly how I feel all the time. Only my pack weighs 50+ pounds. LOL Seriously though, everything you mentioned is how I feel. I'm jealous that my family only had to experience those few horrifying moments, but I've had to live this. I've had to sit and watch every dream I ever had for myself and for Aidan go down the tubes. I miss the little boy he was and could have been so much and the hurt and sadness and anger hit me like a ton of bricks when I least expect it.
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