In one of the groups I read, there was a thread about why having kids like ours is so special. I realized that people often say they wouldn’t change a thing but they don’t often say why. For people that are just starting the journey, it may be heard to understand. So I thought I would try to explain why I wouldn’t change a thing. And you, dear readers, know that it has not been easy, you have been with me through the high highs and the low lows. But with time the ride becomes more like a gentle stroll along the ocean and this is why:
Why wouldn’t I change a moment of my life with Nathan?
Because he is a very happy soul. He wakes up and his eyes are double round and sweet and there is a vulnerability about him and I can’t help but lay in bed with him and scrunch him up against me as tight as I can and kiss his chubby cheeks. He can’t move like a typical kid can so I can cuddle him as hard and as long as I want and he loves it! Typical kids are only babies for a few months, then they don’t want to be held, they want to be exploring and moving. Our kids can’t move or take longer to move so you get to hold them for much much longer, and you develop such a deep connection with a child that you get to hold every day for months and sometimes years!
Because I can be having the worst day and I see him and he gives me the biggest smile because I am the center of his world and he’s not busy running around and playing and he makes me feel so special. Even when I am a stressed out mess and/or making him do things he doesnt’ want to do, he looks at me with absolute adoration and forgives me completely for anything/everything I’ve put him through.
Because his eyes say a million things and they are so beautiful and expressive. Because he cannot speak I have learned to read his eyes, his movements, and to listen really quietly with my heart, not my ears. I can hear his needs in my heart and know exactly what my non-verbal son wants. You develop a bit of ESP with kids like ours because you have to figure out their needs and they cannot tell you in conventional ways.
Because I forget to be selfish. My son is so helpless that I forget the litany of “what about me, what about me, what about me” that used to run through my head. Instead I think about him, what he needs, then I think about another child that I read is having a bad day, and I send him and his family a prayer, then I think about all of the families struggling, and I pray for them, and before I realize it, I’ve forgotten to worry about myself and consequently I do not get so stressed out or miserable.
Because I’ve learned to ask for help and I’ve learned to recieve and I’ve learned to give and I’ve learned to appreciate others. I’ve learned that this journey is too difficult to do alone and that I have to reach out and you discover that, wow, people really are good and kind.
Because I can’t escape the fact that I am not in control. I used to live in this deceptive bubble where I used to think I was in control. Having Nathan showed me that I am in no way in control and my only control is having faith and a good heart.
Because I’ve learned to live in the moment. I’ve realized that the moment is all I really have. I look at Nathan and I know that even though he is healthy, he is holding on to this earthly body by a thread. And it makes me realize that lo and behold, so am I. It’s easy to think that I will live a long long life. But having Nathan reminds me that my life could end at any minute, just like his could, just like everybody and anybody’s could. And this awareness makes me appreciate every moment and every day even more.
Because he’s a lot of fun! He loves life and enjoys it deeply. He laughs, pulls my hair, screeches when he needs attention, gets angry if we put him down, throws his head back in laughter when other kids are around him…and he teaches me that it is important to just be happy and enjoy life!
There are many more things that have made me grateful about the 3 years I’ve had the opportunity to spend with Nathan.
I know that people looking from the outside in feel sorry for us, they feel sorry for Nathan. They cannot understand how exquisite it is to share a life with him. I will not say it is easy, it has definitely been a journey and there have been many very difficult moments! But in general it has been a journey of growth and of healing. Being his mother has helped me heal from so many wounds and misconceptions and I can honestly say that today I am a better person because I am Nathan’s mother. And because of that, I wouldn’t change a thing of my life with Nathan.
Very well said Marcela. You conveyed my own feelings in your post! Hugs to you both!