Tonight my heart broke as I recognized a new type of pain. I've started to feel it over the past few weeks. It's the pain I've heard about by other mommies like me who are more experienced in this journey of special needs. They told me that after the pain of the diagnosis, the pain of mourning the child you wouldn't have, the pain of acceptance, and the pain of establishing a new life plan and routine comes the pain of watching your child experience nonacceptance by his peers. Ignorant me, I thought that pain was in my distant future. It is not. It's starting now. And it burns and it aches and it stings, all at once. And the silly thing is that this heartache was not triggered by a negative experience. No one was rude or cruel. Kids are being kids, and they are realizing that my kid doesn't make eye contact, doesn't talk, doesn't play, doesn't interact. He's in his own world. And it's a world they don't recognize or understand. When the kids in our neighborhood were younger, they didn't know Jayson was different. They didn't notice he didn't talk. He was a "baby" like them! They brought him over toys to share, put Cheetos in his mouth, grabbed his hand, said he was their friend, talked to him and didn't expect a response back. It made me happy. Well the kids are getting older. They are becoming active and social. They don't say hi to Jayson anymore, without prompts. They don't ask him to play like they do the other kids. They don't mention him when asked who their friends are. They don't share their toys or Cheetos or even acknowledge that he's there. He's not interactive, so they don't engage. It's not their fault; it's not anyone's fault. It just is, and it is happening a lot faster than I expected.
This is not a reflection of neighborhood, friends or neighbors because I swear on my life, I have the very best! The parents in my neighborhoods have hearts of gold and they want their kids to be friends with Jayson. You see, until now, it didn't take a lot of prompting or effort for anybody for our kids to be "friends". But now, I'm starting to realize that as Jayson gets older, so will his peers, and their relationships will change. They won't look at him through their 2 year old "everyone is the same; everyone is my friend" eyes. Suddenly, Jayson is different, and even the young children are noticing. And it hurts.
It is in moments like these that I break down. I revisit that mourning cycle for a moment, allow myself to grieve, give myself a pep talk, pray for comfort, deal with it and ultimately accept it. I asked myself a question tonight, "Why are these things so hard sometimes? When I stay in the safe secure environment of my home playing with Little J celebrating the little things, life is great! I am completely happy! Why is it so hard on me to walk out those doors and face the world?!" And it came to me... the same thought I have thought many times. ---- Because this is NOT how life is supposed to be.
This is not how life is supposed to be.
I think this often. When my heart aches, when things get hard, when my child is suffering, when there are no answers, when I'm overcome with worry, when people judge. This is not how life is supposed to be.
When this thought enters my mind, it relates to two different perspectives--Jayson and myself. Clearly, this is not the life I would want for my sweet son. He doesn't deserve a life of suffering and pain. This is not how life is supposed to be for Jayson. But I also think about it through my own perspective. This is not the life I dreamed for myself. This isn't the life I see others living around me. This isn't how life is supposed to be. Usually I am so focused on Jayson and all he has to endure that I forget about me. It's on days like today, when he's more stable, that out of the blue I become aware of my personal pain.
Well tonight, I attempted to understand my thought process. If I can understand it, perhaps I can fix it?! This one main idea and thought is frquently causing me so much pain. So I asked myself this question-- "How is my life supposed to be?" I think the answer to that question is different for different people. If I could go back to my ambitious, confident and positive 18-21 year old self and asked how I thought life is supposed to be in my future, I think I would have said the following:
--Life is meant to be spent with someone who loves you, who you mutually adore.
--Life is meant to be challenging.
--Life is meant to build character.
--Life is meant to be spent in the service of God and others.
--Life is meant to be happy, fun and enjoyable.
--Life is meant to be full of new experiences that open your eyes and change you.
--Life is meant to be spent with friends and those who uplift you.
--Life is meant to be gratifying, full of hard work, accomplishments and success.
--Life is meant to to help you gain strength and perspective.
When I thought of these things in my younger years, I was basically thinking of falling desperately in love, landing the greatest job in the world, making lots of money, traveling the world and raising perfect, smart and attractive kids. THAT was what life was all about. It was about living the American dream. It was about fitting in, keeping up, and maybe even rising above. There was something wrong with my immature perception of the perfect life. There is NOT something wrong with my life.
I have all of those things I wanted. I am doing the things I dreamed of. I am living the life I hoped for. It just looks very different from what I pictured, and it likely looks different from those living their dreams around me.
My husband and I may not be going on romantic dates or getaways, but my husband has shown me a definition of love that I never knew existed as he has cared and provided for our fragile family the past couple of years.
I may not be challenging myself by pursuing my PhD or by writing research articles like I imagined, but I have an honorary MD specialized in Jayson.
I hoped life would build my character by continuing to make me more awesome, but through life's experiences the past 3 years I have learned the very definitions of humility and charity. It is through this transformation that I am creating my new identity; I'm not only building my character, but redefining it.
I may not be going on service missions like I dreamed of, or serving as an advocate for those who cannot speak for themselves, but I am an advocate for one of God's most precious souls. I serve him relentlessly, fight fiercely for his life, and act as his voice on a daily basis.
I may not go on many fun adventures or expeditions, or spend most of my day laughing and playing like I imagined. But I have discovered true happiness. I have an understanding of true and complete celestial bliss that most people will not feel or understand in this lifetime. Jayson has opened my heart to that, and I recognize the smallest blessings and miracles. I know what matters in this life. I see it, I feel it, and I experience it. For that, I am truly blessed.
I may not be traveling the world, experiencing different cultures, speaking new languages, or be taught and changed by their unique populations like I pictured. My eyes weren't opened by my exposure to the world, but by my exposure to those precious souls in it. A boy with part of his brain missing, a girl who cannot walk, and children who rely on medical intervention to survive daily life have opened my eyes to what is most important in this life. They have taught me lessons that have changed me forever, many without saying a word. Those lessons were learned in the walls of a children's hospital and not in another country.
I may not attend the greatest parties, nor am I even invited. I may not belong to the popular groups, or get invited to high school dinners or friend reunions like I hoped for. But I have found the world's most genuine people who know just what I'm going through and how I am feeling. They are my soul sisters and have been there for me like no other friend ever has. Jayson opened me up to their world, and I thank God for them every day. I've prayed my whole life for the quality of friends I have now. And we see one another well beyond the surface level.
I may not be working full time, writing books, making history, performing research, earning awards, traveling for work or standing out as a well-accomplished leader in my field, but I am using my hard-earned degrees to work in a field I'm passionate about with outstanding professional colleagues who provide me with the flexibility I need to care for my family. I have missed out on many, many opportunities the past couple of years. But I've learned that there is more to life than climbing the career ladder and searching for opportunities of advancement. I have found that happiness in my career surpasses my desire for success, recognition and achievement. More importantly, I have learned that gratification, success and accomplishments can happen outside of a work environment, and it is just as rewarding.
I always thought that over time and years of experiences I would gain perspective in my old age. I didn't think there was any other way. I was wrong. Another way to gain perspective is through a significant life-changing experience. I've had that. This experience has made me wiser, deeper, stronger. I see the world differently than many of my peers. I often think of that as a bad thing, but it's not. Many fight their entire lives to obtain the strength and perspective that I've gained in the 3 years of being Jayson's mom. It's a gift.
So I'm working on changing my thought process, which should ultimately affect my happiness. Sure, I pictured my life differently. But there isn't something wrong with my life. There was something wrong with my immature and ignorant views of what life was supposed to be. The next time my heart stings because things are differently in my life than I thought they should be, I'm going to stop myself. No, it's not easy to watch Jayson experience so many trials. It's not okay with me that he suffers. And it is not admissible that it's painful that he has challenges in making friends and in his development. But I'm happy with my life. Jayson is here. He teaches us every day. He has changed everything. I am better because he is here. Many are blessed by his journey.
And it seems I'm living my life just as it is supposed to be.
