I was just looking through pictures on my computer and came across some pictures we took during Ben’s first 3 months. I would give ANYTHING to go back to that time. I am still filled with grief and despair and devastation when I look at those pictures. I would give almost anything to go back to that time, before we knew that Ben was going to have seizures every day. Before we knew that Ben wouldn’t be crawling at 17 months. Before we knew that we would be crying every day because we couldn’t help our son stop having seizures. Before we had any idea that we would have to worry about whether our son would be able to walk, to talk, to feed himself.
On the flip side, I realized yesterday that we are so lucky that Ben is doing what he’s doing. He laughs. I mean, really belly laughs. He giggles and makes eye contact while he’s giggling. He makes noises and complains and watches his sister run around the room. Sometimes he even gets excited to see me after I’ve been gone for a few hours. He sleeps well (as long as a seizure doesn’t disrupt him). He can touch things. He can reach out and hold his sippy cup or bottle while he’s drinking. He can touch my face. He can put his head down on my shoulder and snuggle up against me to cuddle. He’s generally a happy baby. I realized how lucky we were for Ben to have all these abilities when I met a 4 year old girl yesterday who has quadriplegic cerebral palsy. I have nothing to complain about.
I know that I want to get to full acceptance about Ben. I really do want that. But I also want to keep pushing him to do the most he can possibly do. I haven’t yet found a way to balance those two ways of being with him.
I also know that I want to stop suffering. My suffering about Ben is my choice and I can choose to stop it. It’s directly related to my thoughts and it is my job to choose thoughts that don’t result in pain, but instead in joy – both for me and for my children and husband.
6 comments:
That is so beautiful and poignant. Ben is a lovable baby and he will be all that he can be. The love and parenting that you and Aaron are giving is the best that is possible, despite a feeling that there must be more you can do. You are on the right track. Love, Dad
Wow very well said. I am so inspeied by you and Ben. You are an amazing mother and woman. Ben laughs because you bring him joy and laughter. You taught him to laugh!!! And he is such a sweetheart! Lots lots of hugs and kisses!! Elizabeth
What a tremendously warm, honest and inspiring message. My heart both goes out to you and I am inspired by your wisdom and courage!
Lots of love,
Brac
you wouldn't be so wonderfully human, if you didn't also feel loss, grief and pain. The fact that your embracing those feelings and not masking them with false cheer is what makes you a real person. xoxox love you a whole lot ♥
The loss and grief you feel are definitely normal in this journey. My daughter just turned 7 and is severely delayed. She can crawl and sit up, but she can't stand or walk or talk or eat by mouth or many other things. However there are SO many things she CAN do. Like Ben, she has the best belly laugh and her eye contact is great and that smile of hers just lights up my life.
It's hard to focus on the positives sometimes, and then other times it's great. I feel the same as you did when I see a child more disabled than my daughter. I know that's not politically correct to say or something, but it makes it easy to put our life in perspective. :)
Love you Catherine!
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