Category: Growing a Daughter

Updates and stories about my daughter from China who came home with challenges described in letters—PDD-NOS (on the autism spectrum), ADHD and RAD (Reactive Attachment Disorder). Her learning curve has been steep and therapy is a way of life. School and social interactions are a challenge. Making art is a way of life. So is a vivid imagination.

just a few thoughts and words

Once again, to begin again, to begin again and to wonder if it is possible to begin again, and to wonder what is possible in the long run other than the daily round.

I feel like I have been very far away.  Every so often during the last weeks, I’ve had the slight impulse to write something, a slight burst of energy. But all energy has been spent doing work for my UU church’s annual pledge drive (“APD”).  I am on the pledge drive team, such an unlikely position for me to take up. It is far out of my comfort level and the changes that have been made to the drive this year have pulled the work only further beyond my ken. However, I’ve had the chance to work on a few parties and thank goodness, parties are in my bailiwick. Two parties in two nights last weekend, and I admit I was quite flattened by exhaustion. The APD has one more big blow out of a party this weekend, and then the work shifts in nature.  There is at least another month to it but no more entertaining.  

And so, I start this way, writing about the pledge drive and the parties because it is where I can start.  At the moment, I am far from she who writes every day and sometimes comes up with something thoughtful.  I haven’t looked at the memoir in months and have only been working on a few thousand words of the novel at a month. I have not been keeping written tabs on daily life or Julia’s doings.  

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birthday girl

She had a very low key birthday because I have been confined to the house or hospital since New Year’s. However, my VNM, aka Ed Childs, brought home her favorite take out, bought her a lucky 2025 bag of Japanese beauty stuff and nifty socks, and served us strawberry short cake for dessert.

And just like that, the little girl who I met when she was five and a half turned 24.

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notice to “friends”

To anyone who voted for trump and imagines they are my friend: Today, I called my pharmacy to see if someone else could pick up Julia’s four monthly perscriptions because I am not allowed to drive yet. During our phone call, the pharmacist said that Julia’s new perscription plan had not yet kicked in and so, the cost would be close to $700 for this month’s medications. I explained why I could not be there to give them her new perscription card and he found a way to access the card and apply it bringing the cost to $20 for the month.

Julia is insured by Medicare and Medicaid. Her perscription plan is also paid by a government program. All of those programs are threatened by the new republican administration.

If trump, musk, kennedy and the congressional majority does what they are planning in the name of government efficiency, my daughter will not have access to the medication that she needs. There are millions of people with disabilities who will face the same circumstance.

And if this happens, it is the fault of republicans, conservative christians and MAGA voters. The lack and loss of medical care to millions of Americans with disabilities will fall on your heads. It is your fault. And you are not my friend.

Hillary was absolutely right. Deplorables!

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healing

Eleven days into the new year and I have been sick each and every day.  What a way to begin something new no matter how artificial the construct of time and new years are. 

So, first off, I am home and have been since late Tuesday, arriving by ambulance because I was attached to oxygen. I am participating in a Home Hospital program. I am still technically a patient of Newton Wellsley Hospital—my wrist band and IV port prove that—but I am getting my care and monitoring at home. I needed to meet some health criteria—after lots of tests to rule out other causes for my condition, I was found to be relatively stable and treatable —as well as home condiitons like a supportive carer.  I wear a very sensitive arm band which is constantly monitored, two nursing visits each day, PT and PA visits and daily deliveries of meds. It felt like too much activity the first day to keep track of everything. Meds are delivered by the nurses when they visit but I must coordinate for myself the early morning and late night meds including five times using the nebulizer during the day.  It felt like too much to take in and actually do on Wednesday and I was quite grumpy about it all.  It didn’t help that my cough was still wicked then and answering either in person or on the phone was tortuous for everyone. 

For me; however, this is a great program. I am home.  Julia, who had a hard time when I was in the hospital, is doing much better with me home. Other than the visits and care that I am getting, there is nothing more that a hospital stay could offer me.  And I have my best carer, Ed, seeing to what I need.  I feel a bit guilty for all the cooking and shopping and cleaning up and caring for Julia and just making me as comfortable as possible that he has done.  But it is lovely having his support.  He is much more than taking-up-the-slack these days. 

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consequences

New Year’s Eve has always been a veguely uncomfortable holiday for me. I’ve never been to Times Square to watch the ball fall, I don’t favor loud parties, rarely have I gone out for diner and dancing. We never built any traditions for the evening which didn’t bother me at all until I was alone.

I think I was happiest when I was working in restaurants or when David and I (and one or the other of the girls) went to movies and maybe somewhat of a quick dinner out. The turning of the century was a good NYE—a bunch of friends gathered at David’s father’s house in Jersey. We were living in Indy then and we still had NYC friends, some with small children. We cooked a nice dinner—I don’t remember what. Wine and maybe champagne. We sat in the kind of dining room that I knew growing up and ate on Dad’s good china, lifting his best wine glasses. One friend didn’t accompany his family because he was a computer guy and needed to guard his hard and soft ware if the worst case of Y2K predictions came to pass. Another friend announced that she was adopting a baby from Vietnam—the baby who now has one year old twins of her own. 

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of ghosts and christmas tree lights

I have been trying/drafting and deleting/ to explain just how this week is.  It is time out of time, ordinary moments out of ordinary order, days of big meals and late church services and traveling and visiting. And too much traffic through tunnels and delays at airports.

No flying this year, but I noticed something I have not really taken account of before.  I have been aware but not articulated to myself the presence of so many ghosts in and around every event, every visit, every meal, every ornament hanging on the tree, every candled trimmed to fit into Julia’s great grandmother’s menorah.

Not one of those events, practices or things stand by themselves. Nothing is new. Rather they are the latest version, the pencil sketch with many erased sketches beneath, the latest in the series of what I remember as winter holiday times. I am aware of both what my eyes perceive and also what I hold in my heart.

The winter holidays always bring on some blues, as they did a few weeks ago, but the sitting with the revelation of sketches in time has brought some awareness, some clarity, some way to find the joy, the blessings in the times that have past.  I am aware of the richness and the subtlety, the near inmoveable traditions dressed with the changes that time brings.

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mood and transformation

Julia is not in a good mood today.  

I woke up late today, sleeping through the alarm that I never, ever sleep through. The clock suddenly said 8:36, and the social worker, who visits us every other month as part of a Medicaid program, was due at 8:45. I jumped out of bed, pulling on my jeans as I not-so-quietly urged Julia to get up and dressed. Julia hates rushing. No, she doesn’t hate rushing, she doesn’t rush. She complains that I am rushing her which I need to do often to get her on The Ride, or to my choir rehearsal, or to a dozen other things when ‘on-time’ is relevant. If only I could bestow an understanding of time on her—on time, late, soon, rush, hurry, scheduled, delayed, tardy. Oh, so many words! 

This time deficite is absolutely nothing new. We’ve been struggling with time for almost as long as I’ve known Julia. Possibly the toughest part of the challenge is my desire/need/obsession with being on-time. 

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enemy from within

Julia jacket this year.

The “enemy from within.” That’s what he has called us and I rather like that title today. And I am telling my disappointed daughter that she needs to be part of the change, part of the fight for what we as a family, as well as a community, want to see in our country.

We support and defend the rights of women and workers and immigrants and transgender people and unhomed people and people with disabilities and our elders. We believe in diversity, equity and inclusion. We believe in climate change and that our world and its environment needs protection.

Julia’s jacket in 2016

We stand for healthcare for all, for public schools, for an end to book banning, for the separation of church and state, for the rights of students and teachers to demonstrate against any and all wars, for strict gun control, for taxing the rich their fair share, for subsidized housing, social security, medicare. We fight against racism and sexism and homophobia and christian nationalism and facism.

In my gut I feel that the party of our choice did not strongly stand for what we believe in nor did it fight against what is abhorant to us. That needs to change. We all need to attend to the change to be worthy of the title “enemy from within.”

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counting joy

The blur of the busy, the full plate, and the inability to see what is missing or left out or left behind until I trip over the very necessity that I proclaim I steadfastly chase and hold onto dearly . . . 

Joy.

In the darkness that I allowed to blossom last week, I saw the glories of fall—the orange and gold leaves of the massive tree I can see from my kitchen window!  I have observed this tree washing dishes and cooking and watering plants and wondering how I am going to close my two kitchen windows tight. The tree is a few doors down the block in another backyard.  Green all summer, it has slowly been turning into a mighty blaze of autumn color. Last Monday, it was glorious as if lit from deep within, as if ablaze of yellows and oranges. I was almost unable to take in so much color. As the week moved forward and the wind picked up, topmost leaves fell in a rain of gold. By Wednesday, some of the orange was fading into brown and some of the brown joined the rain. By Friday, the gold had almost vanished and the tree top was almost bare, and the weekend saw more of the same.  Today, much more than half the tree is all branches, a skeleton of its summer self.

The noticing filled me with something that I had lost to exhaustion and frustration.

I can admit to missing the necessity of raking leaves.  I know I used to complain when my Madison gardens were filled over and over with the leaves of big trees for what felt like months.  And I miss the Julia as a little girl who raked and jumped in piles and enjoyed it all. Now, I look in yards full of leaves with a bit of longing, but not enough longing to volunteer to help rake.  Maybe some year soon?

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