When I first heard this, I went through different stages of grief. She is, after all, the only grandmother I've ever known. My paternal grandmother died before I was born.
My maternal grandmother is classy and reserved; easy to laugh and has a quick wit. She likes playing cards and once asked me if the margaritas I was helping make on a family vacation were "for the kids" - I did not add enough alcohol, apparently.
I never really understood, until recently, why she did not tell anyone. Even now, when I call her and ask how she is doing, she always answers, "Just fine, thanks!"
My dear grandmother, I understand now.
I understand that you're not fine - but I'm not the person you want to say that to.
I understand that you're not in the mood to be constantly discussing the state of your health.
I understand. I love you.
A hard part about having a child with special needs is that too many questions revolve around her therapy and her progress.
It is, honestly, draining.
To the outside person, it is a simple question. What is she doing? How is she improving?
Every day, it's different. Every day, I try to balance typical expectations for a three year old while recognizing that she faces different challenges. She cannot use her right hand. I have to help her get dressed on her right side; I have to remind her to use her hand and arm too; we practice opening and closing her hand. We practice her standing on her feet evenly.
She has many therapists whom I am in constant communication with; she sees 5 therapists/week + 2 consults per month. I keep up with various doctor appointments. I have to be consistent about her - stretching and massage, putting on her braces, pushing her to try, try again.
It can break a mother's heart. You just want to see your baby not struggle. But she does, and that is okay too. She is a vibrant, loving, talented three year old. When I am having a hard day, I'll tell her. She says, "I hug you mommy. I kiss you."
In this family, we struggle. We forgive. We try, we laugh, and we dance.
I know there is a natural curiosity about cerebral palsy, different therapies, and even how postpartum depression manifests itself... but we humans are all processing. I am still processing my daughter's diagnosis. I am still processing my own diagnosis. Some days I think I am overreacting; other days, I want my bed to swallow me.
I'm not writing this to shut people out - this is a free country. People may ask questions. I am saying that people do not have a right to information. There is no Freedom of Information Act for your life; to the contrary, plead HIPPA, or the 5th Amendment. Too often, we don't want to offend people by saying, "No thanks. Not in the mood to discuss this with you." I am guilty of this. I'd prefer people lead with, "When you're in the mood to discuss, I'd like to hear about ___."
But Julie! You are writing this on your blog, a public forum! Isn't that an invitation for further discussion?
Yes, I am. That is my prerogative. The same way I talk about my postpartum depression. I even found myself mentioning it to people at a party last week, because I am a fun person.
In the same vein, Grace is my daughter. I'm happy to discuss her favorite colors, her favorite dress-up options, the funny things she says, et cetera. I want people to know Grace for who she is, and not her diagnosis. She's not an inspiration. She's a warrior princess, just like her sister Laura.
So, people of the world: let me bring it up.
Or begin by saying, "I'd love to hear at some point"... yes, I will register your request. And thank you for giving me the option to say "no" and "not now"! It shows thoughtfulness, as it's personal for me. I have more hard days now, or maybe they just feel harder. More often than not, questions feel harder too.
I cannot apologize for struggling. I am not a robot. I am a human, living this glorious experience.
As I've mentioned before, the best question to ask is the non-question. The best messages I receive are the ones of neutral support. I love talking to family and showing them the kids via FaceTime. I like catching up with friends (usually by text, if we're honest) and hearing about daily life. I like hearing about hobbies, adventures, trips and ideas. I don't like dwelling on things I can't change.
We live in uncertain times, though the days are patterned. I find myself pausing more and meditating on love. There are four types of love. There are five types of love languages. My husband is not verbose like me; I wrote him hundreds of letters, and talk to him about everything. He shows me love - he shows me that I am whole, when I feel broken. He shows me potential when I feel distress. Will is the calm in my storm. He and I have accepted that we will never know why Grace had a stroke, and we both agree that nothing changes the way we will always do our best for her, as we will do for all our darling children.
I find comfort in love, messy as it is; I've been re-reading lines from Mary Oliver's poem "Rhapsody":
"If you are in the garden, I will dress myself in leaves.
If you are in the sea I will slide into that
smooth blue nest, I will talk fish, I will adore salt.
But if you are sad, I will not dress myself in desolation.
I will present myself with all the laughters I can muster.
And if you are angry I will come, calm and steady,
with some small and easy story.
Promises, promises, promises! The tongue jabbers, the heart
strives, falls, strives again. The world is perfect.
Love, however, is an opera, a history, a long walk,
that includes falling and rising, falling and rising, while
the heart stays as sweet as a peach, as radiant and
grateful as the deep-leaved hills."
Let us ask about what concerns each of us - our life in the spirit, our joys, our doings, and our thoughts. We are more than our sorrow.
My "rules" for this series are short (especially before commenting): this topic is personal and I am currently living in it. This is not an abstract for a dissertation. I do not have 20/20 hindsight yet. I don't need any medical advice, as I keep in close communication with my own PA + Dr., as well as being married to one. My husband and I practice many different types of coping mechanisms as well, which I will write about too. My situation is 100 percent unique and I am writing only about myself. These posts are directed at no one, and still, I am opening myself up to share my experiences. If I can help one person, it will be worth it. Please respect this adult conversation at face value.
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