Last week was very long and thankfully, we had a nice long weekend to put away the stress. I actually thought of the lyrics from "Baby Mine" on Friday night as I sat cuddling Henry. I chose a song to sing to each of my children as a lullaby when they were born. For Henry, I chose "Baby Mine". There is a lyric at the end of the song, "All those people who scold you, what they'd give just for the right to hold you".
After all of these difficult appointments at the end of the week, this is what I think: no matter what I'm told about my child, I know you would love to have such a sweet child for your own. He's mine.
Reading the entirety of "Hope Will Find You" by Naomi Levy in an evening (9pm - 3am) also helped a great deal. There is really no way to express how much it has helped. She is able to express her grief with her daughter's chronic condition (ataxia-telangiectasia) at first as a parent and then through the lens of a rabbi. She talks about her own grief in a way that shows how we all deal with its many forms during the course of our lives. As a rabbi, she says many people come to her with questions about when their lives will start. The issue of waiting is especially pertinent with a child with a chronic condition. Her description of day-to-day realities including therapy and therapists, hoping to "fix" the situation or the child, the small steps forward and sometimes back with development, the grief of watching your child struggle among their peers, are all part of dealing with a very difficult diagnosis and pertain to the greater issue of waiting for things to get better. And then, later in the book, she talks about surfacing to find waiting is not the truth. It is finding your child with gifts and talents beyond other children their own age. Her daughter's wisdom and knowledge of herself, her tolerance of others, and her presence of self are all the hope she needs for her child's future and for her own.
This book really helped me reorient myself toward looking with hope towards my future with Henry. I would love to reprint a dozen different parts of the book but know I can't do so without the express permission of the author, but here is a very small section regarding a trying time in a waiting room:
"The very next week as I was sitting in the waiting room at the clinic where Noa received physical, occupational, and speech therapy, a bald, jovial man with rosy cheeks struck up a conversation with me. I had noticed him before on my visits, but we had never spoken. He told me about his son, who could not speak words and could only make squeaking sounds. I described Noa's various physical and cognitive challenges. I told him how worried I was about her.
He looked at me with the delighted smile of the Buddha and said 'I've been watching your daughter for some weeks now, and I want you to know that she is something special. She's got the real thing, that rare quality. She's going to surpass you; she'll put you both to shame-- you and your husband. She's going to leave you in the dust. She's going to be so far ahead of you that she will achieve things you won't even be able to dream of. When that day arrives, just remember that I was the one who told you so'.
My eyes started to tear up. I had been sitting in the waiting room worrying about Noa, and this extraordinary man transformed my thinking. This man told me my daughter would shine. He delivered a prophesy of hope. Instead of worrying about her future, I needed to start looking forward to it eagerly."
Don't you want to go out and buy it? I am about to re-read it. This one small section helped me with years of struggle in waiting rooms.
"The very next week as I was sitting in the waiting room at the clinic where Noa received physical, occupational, and speech therapy, a bald, jovial man with rosy cheeks struck up a conversation with me. I had noticed him before on my visits, but we had never spoken. He told me about his son, who could not speak words and could only make squeaking sounds. I described Noa's various physical and cognitive challenges. I told him how worried I was about her.
He looked at me with the delighted smile of the Buddha and said 'I've been watching your daughter for some weeks now, and I want you to know that she is something special. She's got the real thing, that rare quality. She's going to surpass you; she'll put you both to shame-- you and your husband. She's going to leave you in the dust. She's going to be so far ahead of you that she will achieve things you won't even be able to dream of. When that day arrives, just remember that I was the one who told you so'.
My eyes started to tear up. I had been sitting in the waiting room worrying about Noa, and this extraordinary man transformed my thinking. This man told me my daughter would shine. He delivered a prophesy of hope. Instead of worrying about her future, I needed to start looking forward to it eagerly."
Don't you want to go out and buy it? I am about to re-read it. This one small section helped me with years of struggle in waiting rooms.
Tuesday was Henry's first day of hippotherapy. He loved it... side sitting, grabbing objeects, up on hands and knees... he did a great job. Unfortunately it was his brother's first day off track. They were not happy. It was also my husband's birthday and they were preoccupied with getting home to make his present ( a lego representation of our home). Henry was more concerned watching his brothers than paying attention to therapy.
Hippotherapy has helped immensely already. Henry has become a little monkey in the last few days. I'm thankful but in the same regard, I don't know where to go with him. Even his teachers and therapists have remarked how different Henry has been in the last week.
Hippotherapy has helped immensely already. Henry has become a little monkey in the last few days. I'm thankful but in the same regard, I don't know where to go with him. Even his teachers and therapists have remarked how different Henry has been in the last week.
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