• To Tell The Truth

    I finished reading a memoir last night about parenting a child with a rare and fatal genetic disorder called Metachromatic Leukodystrophy. (It’s called Harnessing Grief by Maria Kefalas and it was a good read.) Her mom described being told very flatly by a doctor that her toddler daughter had a progressive degenerative disorder and she was going to die. It was a devastating experience for her that colored her entire experience of parenting, as I’m sure you can imagine.

    Although Sarah also had a progressive degenerative disorder, from which she has now died, no one ever looked us in the face and told us what to expect from her illness. I know the reality is that no one knew what to expect, and that the data on her rare genetic disorder just wasn’t out there until she was about fourteen, but sometimes I feel like we were gaslighted. How many times did we ask questions about Sarah’s skill loss, regression, and failure to meet treatment and IEP goals? How many different answers did we get about her diagnosis and what it meant?

    When Sarah first got a diagnosis of a genetic disorder at age seven, that diagnosis was called “Hereditary Spastic Paraplegia.” We were so confused. How could it be hereditary when neither Max nor I had the gene for it, and we were not carriers? How could it be paraplegia when her whole body was affected? How could it be spasticity when she had dystonia, not spasticity? So many times we were told, Sarah is just a unique presentation.

    Now medical science recognizes that children with De Novo Complex Early Onset SPG-4 are a distinct subset of HSP sufferers with a unique presentation. And the parents of kids with SPG-4 in my Facebook group are so savvy. They know all about the presentation of the disease, the regression, the skill loss, the intellectual decline. They talk about these signs in such an educated way.

    Sometimes I feel a simmering resentment that we couldn’t be among this group of savvy parents, educated by our doctors, instead of educating them. But after finishing the memoir I read, I felt relieved that no one told me when Sarah was a baby that she had a progressive degenerative diagnosis. Would it have affected my love for her? No. Of course not. But I don’t think I ever viewed her as a dying child, and I’m happy about that, even if I lived in a world of unknowing.

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  • Late January

    In the evening yesterday I became very anxious thinking about Sarah’s birthday coming up in February. It’s her 18th birthday, and I had started thinking about how much children change in just a couple of years. I was looking at photos of Sarah from 2018 up until 2022 when she died, and her face and body changed so much in just a year or two. I started to worry that I wouldn’t be able to recognize her if I saw her today in the afterworld at her current very grown-up age of almost 18. 

    Then I became even more anxious thinking about what will happen when I’m finally “reunited” with her, whenever I happen to die. What if she’s 34, or 48? How will I know her? What if I walk right past her? What if neither one of us recognizes the other one? This scenario, as if we were blind dates meeting up at a train station, just terrified me and pushed me almost into a panic attack.

    Max was able to calm me down pretty well. He said that even if Sarah were a non-corporeal being now, which she probably is, she holds all of the essence of Sarah. We are her parents, and parents can recognize their child, always. It’s primal.

    I fear losing her even though I’ve already lost her. I had a dream last night in which I was carrying around Baby Sarah and a bunch of the equipment that comes with infants, like a diaper bag and a car seat, and I looked down and I realized I had dropped Baby Sarah somewhere along the way. I was only carrying the equipment around. I knew I had to go back and find her and in the dream I felt it was hopeless. This morning I have to remind myself that she’s always with me.

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  • Bright-siding

    I should pay attention to ways I am doing better lately and try to remember that I’m actually improving. Although I still cry every day, and think about Sarah all the time, and wonder why the world doesn’t think about her too, I am able to do some of the things again that I used to take pleasure in.

    For instance, after Sarah died, I stopped doing the New York Times Sunday Crossword Puzzle. I just didn’t find it fun anymore, even though I had done it for years and years. I just threw it away every week without looking at it. About a month ago, I decided to pick it up and try it again. I had a phobia that it would be too hard for me and I wouldn’t know how to do it. But I worked my way through it the same way as usual and got it solved. The next week I did it again, and I’ve done it for a whole month now.

    I’m trying to go back to other things that used to give me pleasure too. Crocheting afghans was once my gig while I watched TV. I dropped that, and have had an afghan half-finished for about six or eight months now. I need to pick it back up.

    I know I need to find new things too to give me pleasure, but it feels so hard. Talking to people seems to have become a big deal. I’d rather not deal with the “getting to know you” phase. I worry about my ability to carry on normal conversations sometimes. What do normal people talk about? Their children and grandchildren, I guess. Work. Politics. The weather. Their pets. Book, movies, and television. Traffic.

    I have done fine in social situations with people I know well. Thanksgiving. Going to the movies last weekend with Max and our friend Rafael. I need to keep looking at the ways I am doing okay. It’s enough for now.

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  • Build-a-Bear

    Build-a-Bear

    Sarah’s birthday is coming up in February. To be truthful, Sarah’s birthday always caused me a lot of anxiety, because I worried so much about whether other kids would show up to her party. She still wanted a party long after other kids had aged out of birthday parties with cake and activities. For instance, in Fifth Grade, she had her party at Build-A-Bear. The other kids were good sports about making teddy bears and so forth. This was when Sarah was in an “inclusive” school program with typical kids still.

    I worried a great deal about what would happen in Middle School, which is sixth through eighth grade here, but Sarah made two really good friends there, Cole and Danny. She was so happy and then – boom – the Pandemic hit in March of Seventh Grade, just a few weeks after her birthday party at our local movie theater. When she went back to school in Ninth Grade, it was to a special program, and they held her birthday party at school, which was a big help.

    My own birthday is a week from today, and I just don’t feel like celebrating. I’m not feeling depressed, but I can’t really think of anything I’d like to do. Maybe it’s just my age. I read somewhere that in order to be happy, you have to have someone to love, some work you like, and something to look forward to. Things still feel a little colorless for me right now. I’m working on finding things to look forward to.

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  • Hot Potato

    Hot Potato

    Yesterday I watched a documentary about The Wiggles on Amazon called Hot Potato. I had lost track of The Wiggles after about 2009, when Sarah moved on to The Doodlebops and other obsessions. The Wiggles remarked in the documentary that their fanbase turns over about every three years, as young children age out of toddlerhood. 

    I had no idea that the original foursome were no longer performing and that there are now a completely new set of Wiggles, but the new ones seem to be perfectly good at their job. The old, original Wiggles, like Max and me, are getting rather superannuated and senior. No wonder they have retired.

    The documentary brought back many fun memories, and at one point while The Wiggles were performing a familiar song, with their ensemble of animal friends, I reached over to Sarah next to me on the couch and shouted excitedly “It’s Henry the Octopus!” Henry was always a special favorite of hers. But Sarah was not sitting next to me on the couch, Polly the Beagle was.

    At her best, Sarah could perform most of the hand and arm movements for “Rock-a-Bye Your Bear,” one of the best Wiggles songs, and I remember when it played on the DVD we had, Max would tell her “You’ve got a bear to rock-a-bye!” and help her get into position for the movements. She loved doing that.

    Max and I ordered several of their DVDs over Amazon in the “used” category after they were passed on by other families whose kids had outgrown The Wiggles. We laughed ourselves silly over the comments other parents left about the videos. The Blue Wiggle was always my favorite. Sarah liked the Purple Wiggle. I think a lot of kids do.

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  • Screen Shot

    Screen Shot

    For several months I really felt I had nothing to offer my readers and I was pretty determined to stop writing permanently. A couple of days ago a little voice in my head made me decide to go back. Why? I’m not sure.

    At odd moments, I smell the most intense floral scent. It is an intense scent, like a bouquet of roses. Most recently, it occurred when I was clearing the snow off my car yesterday. It was almost like a hallucination. I like to think that Sarah is near me at those times.

    I unearthed Sarah’s iPad in December. We hadn’t charged it since her death. I went through all her photos, and her videos that she and Max made together over the years. It was painful and beautiful at the same time and I cried a lot. Sarah liked to take screen shots of YouTube shows she was watching and she liked to make collages too using various programs. She also liked to take photos with the iPad.

    The last photo on her iPad is a screen shot, pictured above. I think it’s from the Stampy Cat Minecraft adventures she loved so much, but I’m not sure. It’s dated August 14, a few days before she died. It just looks so much to me like her last message, like where she went. A long corridor. A door at the end. I cry when I look at it.

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  • Hopkins

    I have to take my Dad up to Johns Hopkins today, to the main hospital, for a scan. It’s going to pretty much take up the whole day and I’ve arranged to take off work. It’s a bit of a drag because, well, waiting around a hospital is never a whole lot of fun and this is where Sarah had a lot of surgeries and procedures. She had her first surgery in the old hospital when she was five, and then they opened the new hospital and she had the rest of her procedures there. It’s a very nice hospital as hospitals go. (I’m leaving aside the whole Henrietta Lacks saga and controversy.)

    Sarah’s last orthopedic surgery was on her feet to remove some hardware that was bothering her ankle. At least I think that was the last orthopedic one. At the same time, a feeding tube was installed by the Gastro Team. No wait, there was her surgery to install a Baclofen pump. That came later. But that was by the Neuro Team. But it seems to me that the Neuro Team reserved some OR time for the Ortho Team to get in there and do something? Maybe that was the ankle hardware removal and the feeding tube was combined with something else? I can’t remember what or if anymore. She had spine surgery, hip surgery, leg surgery. Spine surgery because she had an over 90 degree curve in her spine (scoliosis), caused by muscle contractures. Hip surgery to put her hip back in the socket, also pulled out by muscle contractures. Leg surgery for tendon releases, to help with movement, and to try to keep the hip from being pulled out in the first place, and to try to keep her feet from facing out.

    The spine surgery was a big success, and she became very straight. The feeding tube surgery was also a big success, and the baclofen pump helped a lot. But it was all so hard on her, and so much pain. We spent so many school vacations in Baltimore and she missed school too.

    So that’s where I’ll be today, hanging around the Sheik Zayed Tower and the Bloomberg Pavillion and so forth. There’s a couple of little cafes there, or at least there were before the Pandemic, and I can get a latte and a sandwich while my Dad is having his scan, which is going to take several hours. I really just don’t want to think too much about Sarah. But I think about her all the time, so I guess that’s impossible.

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  • Next Life

    When Sarah first died, I often heard the cliche that “the second year is harder than the first.” This refers to grief, not toddlers. It was hard for me to understand why that would be, and people had a hard time unpacking any explanation. I’ve come to think it’s because the first year is all about wondering where your child is, and waiting with the non-logical, nonspeaking “left side” of your brain for your child to return. If you don’t know where your child is, then there’s an expectation that the child is returning, right? At least for that primitive part of you that doesn’t think rationally. It’s somehow keeping hope alive.

    In this second year, all parts of your brain have lost the battle and they know dead is dead. There’s just a void. Instead of wondering where she is, I wonder where I am. What is my life anymore? When will I return?

    For some reason going to sleep seems the hardest time. When my mind starts to wander and I try to relax, I end up crying and having vague, strange quandaries that just tear me apart. Do the dead still love the living? Is Sarah’s love for me eternal? Does she still love me? I couldn’t sleep last night because I kept worrying about that.

    I feel like a love glutton lately. Everyone must love and like me. Don’t ever stop.

    I got up and Googled “Do dead people still love their families?” I scrolled through the usual ads for psychics and found a post that said that according to the philosophy of reincarnation, people who love us strongly appear in our next lives over and over with us, not in the same roles, but always in some important role, close to us. That’s comforting. Sarah could be in my next life as a good friend or boss or someone else.

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  • Candid

    I’ve always just kind of coasted through the holiday season, and it probably comes as no surprise that I feel depressed, bored, and basically emptied of motivation this year. Is it possible to just die of ennui? Does that only happen to Victorian upper class heroines with tuberculosis? I don’t feel so irritable since I started the Cymbalta, which is good, but I still get pretty down from missing Sarah and feeling like my life is empty.

    I got really down a couple of weeks ago when my Dad gave me some of the journals he kept in the 80’s back around the time he and my Mom separated for a couple of years. My Dad has been sharing a lot of memorabilia and family history with me, and this was I guess part of that. The journals were very heartfelt on his part, and they went over events that were difficult and painful for me to remember.

    Let me digress to say that I had a boyfriend, J-, back in the 90’s, whose mother had died when he was still a little kid, and she left behind a bunch of journals. J and his siblings got ahold of them when they were teenagers and read remarks she’d made about their personalities, or about different incidents, and it convinced them that their mother hadn’t really loved or wanted them or loved other siblings more than them. Eventually their father took the journals and destroyed them.

    At the time J- told me this story, I didn’t think the remarks in his mother’s journal sounded terribly critical. I wasn’t sure why they caused so much stress. But after reading my father’s journal my lifelong feelings that my own mother didn’t want or like me very much felt very strong. And, surprise! That kind of expanded into feeling unlikeable and not very good about myself.

    I’m probably being overly candid here, and oversharing, and I’m going to get a lot of those remarks from people like “You are so candid, it’s remarkable how much insight you have into yourself!” But I think I haven’t been writing a lot lately because I just can’t bear to share how I really feel, to put down in this blog what I’m really thinking and feeling. So I’m going to try to make an effort to do that.

  • Louis

    A woman posted on my parenting chat forum (where all the posts are anonymous) about her difficulties accepting an unexpected disability in her four month old infant. She posted about a month ago, and I just saw her post, so I guess the baby is around five months old now. She was a little incoherent, or maybe I just didn’t really understand her post, or there wasn’t much actual information. She said her baby would probably never walk and might have intellectual issues and he couldn’t open his hands. It all sounds rather vague, like he failed to pass some newborn screen and she was concentrating on the worst possible outcomes. They were waiting for the results of genetic testing but the MRI was normal.

    She felt she just couldn’t bond with the baby at all and she wanted to give it up for adoption or foster care. She was scared to see a therapist because she thought she might be reported to Child Protective Services. Her husband wants to keep the baby. So she wrote that she wanted to divorce and get custody of their older, typical child.

    She sounded like she had full-blown post partum depression. It was hard to tell what was actually going on with this child. A lot of it sounded like worst-case scenario anxiety. There were pages and pages of posts trying to reassure her that she would come to love the baby. That a therapist would not report her and she needed to seek therapy and get on a good antidepressant. Or, posts trying to diagnose her baby and so forth. The whole thing of course could be a troll posting.

    Anyway, I started to fantasize about adopting her baby. It’s great to have a fantasy to get yourself through the day. She could just drop the baby off here, either permanently or for some respite while she gets over her PPD and gets some therapy and works on her marriage. Max and I will love on the baby and stimulate him appropriately for all his special needs (whatever they are) and get him to Kennedy-Krieger for assessments of his little closed hands. Hopefully he’s sleeping through the night.

    It’s fun to imagine him snuggled up in a little baby wrap or sleeping in Sarah’s room, but I have my doubts about whether I’m really equipped to start over with an infant at my age. So maybe we’ll just be respite parents for him for a little while. Just sort of Tante and Uncle. I can’t decide whether or how much disability he turns out to have. I guess it doesn’t really matter. As long as I get to love on him a little bit. It’s nice to have a fantasy. I think I’ll call him Louis.

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