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Obligate Aerobes
Once again I have been perseverating on how Sarah died, and to a certain extent on how my mother died, which fills up the extensive mental real estate not preoccupied by the subject of where Sarah is now. I know that Sarah most likely died during a seizure. Her death certificate states “Asphyxia” as the cause of death with “Complications of cerebral palsy” as the secondary cause of death.
My mind will work over and over what must have happened. We know several other special needs kids who went to sleep one night and did not wake up in the morning. I have heard from a mom friend who has a kid with a different rare genetic disorder of sitting next to their child on the couch one minute interacting, and the next, the child is completely gone. I can’t imagine the pain of that scenario.
I have lately been reading a book by Dr. Sherwin Nuland called How We Die. Dr. Nuland says that there are ten thousand pathways to death’s door but every death is caused ultimately by lack of oxygen, which the body must have to continue its vital functions. We are obligate aerobes – we must have oxygen to live. He describes some of those pathways, particularly in older people. It was helpful to my understanding of how my mother, who had liver, kidney, brain, and blood pressure issues, ultimately succumbed.
The CDC says that SUDEP (Sudden Unexpected Death In Epilepsy) can be caused by a few different mechanisms: pauses in breathing during the seizure that reduce the oxygen in the blood to a fatal level; cardiac arrythmias from the seizure itself, or obstructed breathing during the seizure. Or a combination of these things. As Dr. Nuland writes “Oxygen is the focal point of the lens through which the sustaining processes of all living things must be studied.”
I don’t like to think about Sarah gasping for air or unable to breathe. But Dr. Nuland believes that once the sustaining oxygen falls below critical levels, it is accompanied by the body’s production of endorphins (endogenous morphine) and the injured or dying person is usually in a tranquil state. I’m glad to hear this, because he essentially says that there is no such thing as “dying in your sleep.”
I contacted the SPG-4 Foundation last week and asked them if they would consider adding an “In Memoriam” link or page to their very nice website. I do not know if there are any other children with Early Onset Complex SPG4 (or whatever the term du jour they are using for Sarah’s type of SPG4) who have died during the longitudinal study, but I think it would be nice to memorialize Sarah and all such kids. I think it would also be good for the parents and families of such kids to support each other. And, I think it’s important to recognize that this condition can potentially be fatal. I don’t want to scare the families but we are all obligate aerobes, right?
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Dedication
Yesterday I noticed that the flowers are already starting to bloom here. We had a very mild winter in DC. That makes all seasons that Sarah has been gone: summer, fall, winter, and spring. Although it has only been six months and ten days. But time is not always reliable for me right now.
Lately we’ve been more active about certain things about Sarah. We applied to the Parks Foundation to purchase a memorial park bench for Sarah in one of our local parks, the one where Sarah often practiced her wheelchair driving with her chin switch and where Polly walks to a lot of days. We’re told it will come with a three-line plaque and we have to choose the dedication. I don’t know the number of letters we will be allowed yet. I was thinking something like
*Sarah G.—- 2006-2022*
“You Will Be Remembered In
Summer, Fall, Winter, Spring”
Hopefully that’s not too many letters. I don’t want to have to cut out a couple of the seasons and have her thinking ‘What — you just forget me in Fall and Spring?’ Anyway, I’m open to suggestions if you feel like dropping a comment. By the way, WordPress has this thing where I have to approve your comment in order for it to be seen, so don’t worry it you are posting a comment that it’s not being recorded. It goes to the central office and I get pinged and told to approve it. I’m not exactly a technical genius about this blog and I apologize if it doesn’t have a lot of bells and whistles on it.
We also contacted Sarah’s school about having some kind of memorial there for her — something that the school needs but can’t fund, or another memorial bench, or piece of adaptive equipment. The principal is supposed to get back to us when he has surveyed Sarah’s team.
Finally, we had the idea that next Christmas we are going to volunteer at Give Kids The World, the Wish Kids resort where Sarah had so much fun. Last Christmas was so hard for us, and GKTW needs volunteers year round. So we are looking into that. I feel a little scared to be taking these steps, frankly. Part of me just wants to keep watching documentaries and resist interacting with the world. I know that is my depression talking. I try not to let it have the last word.
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Breaking Up
From the time Sarah was a toddler, she would get fixated on particular movies or television shows and then all of a sudden she would have enough and she never wanted to see them again. When she was really little, she loved the movie Babies, which is about four little ones from different parts of the world and their first year of life. Then for a while it was the Disney movie Cinderella. Then, The Wizard of Oz. She loved Mister Rogers for many years and was pretty obsessional about him. She also liked various cartoons like Arthur and Oswald.
We saw these movies and shows so many times during these rotations that we knew all the dialogue, and the plots, and my husband and I began to fetishize and psychoanalyze some of the characters. There was a short period where Sarah watched the cartoon Max and Ruby where we were especially open in projecting our psychodramas onto the characters. “Why does Max always have to eat his eggs before his strawberries?” our Max would complain. “Why can’t he eat what he wants?” “Ruby is doing the best she can!” I would counter. There was some tension expressed via Max and Ruby and Sarah sometimes had to shush us.
For some of these movies and shows, I felt that she was learning and teaching herself about her disability, and her development. The development in Babies from newborns to independent toddlers, which was so different from her own, perhaps informed or raised questions in Sarah’s mind about when her own development would move forward. The magical fairy godmother in Cinderella was perhaps a wish fantasy for her. The Wizard of Oz spoke to her fears of getting lost and the solution of having magical friends who helped get her home. Or maybe she just liked these movies.
Then she got into YouTube when she was in middle school, and Minecraft, and watching other people play and narrate Minecraft on YouTube. She loved a particular host named Stampy Cat, a young British guy who was fun and funny and appealed to children. Once she received an email from Stampy Cat in response to one that she and Max crafted from her, which was extremely exciting in our house. It’s still posted up next to her bed. When she died she was wearing Stampy Cat pajamas.
For some reason I really got upset when she stopped watching Arthur, which I think occured sometime after 4th Grade or maybe during 5th Grade. We used to watch a couple of episodes every day after school together, and I really got caught up in the relationships among the kids/classmates/families on the show. When she suddenly didn’t want anything to do with it anymore, I felt a real sense of loss. I tried to convince her to go back until certain plot lines were seen through, but she was clear she had no interest. She always knew her own mind.
A few days after Sarah died, I sat and watched The Wizard of Oz and some Mister Rogers again to feel close to her, and I was planning on watching Babies and some of the other things she loved too, but I never got around to it. I guess I had broken up with them too without realizing it. That makes me sad but I guess that’s natural. It doesn’t mean I have forgotten Sarah. I will never forget her.
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Spring a doodle
Yesterday I was coming home from walking Polly the Beagle and as I was coming down our block I thought I saw Max in our front yard next to the street. He seemed to be wearing this green sweater I got him for Hanukkah that he likes a lot, and some grey sweatpants. (It’s been a warm winter.) He was hanging out near the curb and I thought he was looking up and down the street for Polly and me. Max is not a morning person and when I saw “him” my first thought was that someone had died and he was trying to find me to tell me so that we could make plans for the funeral.
Of course, there were several problems with this theory. First, we both have cell phones, and while my husband doesn’t function well first thing in the morning, I think he would do better than standing near the trash cans and gazing wistfully down the street. Second, this pseudo-Max had somehow regrown a head of fully black hair while the real Max’s hair has gone silver for many years. Finally, pseudo-Max was holding the leash of a large dog, possibly a Lab or one of those Springadoodle things. Within a few seconds I was able to reassure myself that this was not my husband alerting me of family tragedy, it was a random dogwalker on my lawn.
I guess I should just accept these kind of irrational thought incidents and not hate them so much. I can hear one friend or another telling me “Don’t be so hard on yourself.” While that’s kind of like the “practice self-care” advice I used to get, I guess random green sweater men, or random things, are going to scare me for some time to come. All I can do is try to surf this wave rather than be plowed under by it.
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Spirit Week
I was going to start writing this morning about Rare Disease Day, which falls on February 28, and harangue you about its meaning and importance. Yes, close call for you guys. Instead, Facebook’s “Memories” feature dragged up a post of mine from 2016 that grabbed my attention and even got me laughing a little bit.
I wrote: “So….all last week I dressed Sarah in a series of outfits for ‘Spirit Week.’ There was Pajama Day and Wacky Day and a few others. Just checked the calendar and, yeah, it’s this week. My husband can’t stop laughing. Please tell me this isn’t terrible.”
My friends were reassuring but wondered why the school hadn’t contacted me. Some theorized that the school had gotten a kick out of it. In truth, the school probably didn’t notice. Why would they? It’s not unusual for special needs kids to come to school wearing pajamas, or to come to school wearing divergent patterns on their pants and shirts, and mismatched socks (Wacky Day) or wild hairdos (Crazy Hair Day), or whatever eponymous day it was. The teachers and paras were not going to notice one more kid with a blue sock and a brown sock.
That year (2016) was a good one for us in many ways. We took our Wish Trip in the spring and we went to Camp Chatterbox as a family in August, which was fun but exhausting. Sarah had been in Third Grade that year, and we had a lot of issues with her school. Originally she was supposed to be in her Augmentative and Alternative Communication placement through Fifth Grade. But the county decided that the program should end for all students after Second Grade. We were a bit stunned and Sarah ended up for Third Grade at a school that was really not right for her. It was a good school with a strong principal and a lot of parent support, so it was hard for us to be on the outs with the school, because people would gasp when we said we were kind of unhappy at Much Loved School and with Principal Lovedalot.
We were very psyched about Much Loved School because it was pretty close to our house (the AAC school had been a long bus ride) when my husband met another special needs dad at the day camp bus stop whose daughter had been attending Much Loved School for several years. This dad proceeded to tell Max that his fondest wish was for Principal Lovedalot and his entire family to burn in the fires of hell for all eternity. We were agog! Well, it wasn’t long before we understood.
The kids with disabilities at Much Loved School were pretty much warehoused there. Sarah came in with a reading level that was tested low normal for second grade but by the first few months of third grade her reading level plummeted down to Kindergarten level. She wasn’t learning anything. We visited the school. Her classroom was a mix of all types of kids with different disabilities. We sat at her table while a paraeducator showed her and a little boy two pictures: one of a clown and one of a teacher. “Which person can you learn from?” the paraeducator wanted to know. “I think you can learn a lot from the clown,” said the bright little boy. No, that was the wrong answer insisted the paraeducator. Sarah’s assigned aide then directed her to find the “right” answer on her talker. She put her head down.
After numerous other issues, including Principal Lovedalot telling me I was a bad mother because I did not want to sign a blanket release of Sarah’s medical records, we actually had to hire a lawyer to get Sarah out of Much Loved School, as if it were a prison. Thankfully, she spent Fourth and Fifth grades in a wonderful elementary school with a much better environment for her where she was stimulated and happy and so were we. I marked Spirit Week more carefully on my calendar.
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Losing a child
This morning while cruising through Facebook I saw one of those “harried mom” memes in which the mom said she must be doing okay because she hadn’t lost any of her children or pets today. I get that. Losing your kid in an airport, or mall, or parking lot is really horrible. I never exactly had that experience with Sarah because she was not mobile and we did not have to chase her around, but I can sympathize with the worry and I’ve watched a few heart-wrenching documentaries about missing kids.
The fact that I have now lost a sixteen year-old child seems very careless of me. I could not keep track of her, one of the primary duties of a parent. It makes me think somehow of those old 70’s cop shows where the police would show up when a teenager was missing and tell the mother “She probably just ran off to see her friends.” And the mother would say “No, I know there is something wrong, she wouldn’t do that.” But the police won’t listen and would refuse to take a report. Now of course we have Amber Alerts and the Center for Missing and Exploited Children and Sarah’s picture could be on a milk carton. Except she’s not lost or missing. I have to accept that.
When Polly our beagle was young, she went missing for short periods of time pretty regularly. We adopted her at a year old from the Humane Society. We had zero experience of dogs but Sarah really, really wanted a dog. We had been on the waiting list for a service dog organization for a couple of years when Sarah was five or so, but she began to make it clear that she wanted a dog, NOW, and she didn’t care whether it was a service dog. So we took ourselves off the list for Canine Companions for Independence (a great organization) and headed over to the shelter and met Polly (whose name was once Rhoda), who loved Sarah right away and connected with her.
We had no idea that different breeds of dog had different personalities and that beagles were, shall we say, the ultimate escape artists. The first time I took Polly for a walk, I just assumed she would want to play fetch, would come when I called her, and would want to be near me. Little did I know that she could be in the next county chasing a rabbit or squirrel the moment a ball (which she had zero interest in) was thrown. During her young years, we had many Polly-chasing and Polly-recalling incidents, even after we learned never to let a beagle off-leash. (Now that she’s eleven, she’s much more clingy.) Perhaps we were living out some parenting experiences we didn’t have with Sarah.
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Legacies
We were never expecting Sarah would marry or have children (although she definitely had a way of surprising us) but now that she’s gone, our line ends here. There are multiple grandchildren and even great-grandchildren on both sides of our family so it’s not as if our families will stop existing.
Max and I are both the youngest child in our families. He grew up in a big family, with almost everyone in the same city, Philadelphia, and everybody going “down the Shore” together every summer to the South Jersey Shore. I grew up in a small family with my relatives all in other cities and we moved several times. Sarah was the last grandbaby in both of our families, and in Max’s family, a couple of great-grandbabies slipped in the door before her.
I loved Max’s extended, large family. Huge numbers of cousins, aunts, uncles made every wedding and family gathering so much fun. Max’s mom was warm, loving, and caring. She always was happy to see us when we took the train up to Philly from DC. She had a personality very much like Sarah: warm, affable, accepting. Unfortunately, she died when I was 5 months pregnant with Sarah from a heart condition. After Jeannette’s death, the family fell apart a little bit. Max’s brothers did not want to get together for Thanksgiving or other holidays. We had an infant and didn’t travel so much. I guess all families change.
Okay, I feel myself wanting to break into “Time In A Bottle” here by Jim Croce. Please know that I really was thinking that I was feeling much better today in comparison to last week.
I guess I’ve been wondering a lot lately about what makes your children your legacy? I think the best conclusion I can come to is that they keep the memories of you alive, at least for a time. It’s not the worst thing that could happen to me, being forgotten or not really remembered in peoples’ memories. I’m okay with that. I’m okay with our photos being the ones that future family members say “That’s…that’s….oh wait… no let me think…” As long as they can see the love the three of us shared.
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Self Care
This week I was at the dentist getting a dental crown replaced, and she discovered a small cavity underneath the crown when she took it off. “I can just remove that small cavity right now,” she said reassuringly. (Dr. Ramdath at The Smile Atelier is a terrific dentist if you are in need, by the way.) Her wording really spun off my thoughts — whether cavities are removed or whether they are filled — and I began wondering if the cavity Sarah left behind would be removed one day or filled.
I’ve had several appointments to catch up on my dental stuff since Sarah died, and I’ve also had a full physical exam, pap smear, mammogram, and colonoscopy since August. Everything is normal. Prior to Sarah’s death, I did not “practice good self-care.” In fact, being told to “take time for myself” or “practice self-care” were among my least favorite and most laughed-at bits of wisdom to receive from others. Sarah had so many appointments, so many needs, so many out-of-the-blue issues, and she needed us 24/7. Even the typical moms I know talk about how hard it is to find time for themselves.
This was a source of tension between my own mom and I while she was still alive and cognizant. Almost every phone call would end with her saying “Please tell me you are going to take time for yourself.” And I would get frustrated, or just agree and tell her yes in order to appease her, but not even really know what that meant. Now of course, I have almost nothing but time for myself, my work, and for Max and I. And I “practice” good self-care.
I do see that my behavior was in some ways self-destructive and self-defeating. There was the winter and spring of 2013, ten years ago, when I did not seek out medical help for what turned out to be a strep/pneumonia infection, and I ended up in the hospital ICU with meningitis for 7 days in May (Not to be confused with the 1964 movie thriller Seven Days in May starring Burt Lancaster). I have seen this type of event with other special needs moms I know, who have ignored cancer signs or severe anemia.
I think a lot of people believe that families with severely disabled children receive monetary support from the government, as well as support staff or nursing care to come in and assist them, also provided by the state. I suppose there must be some states that furnish those things (I believe California is generous), but my state does not. We do have particularly strong public schools, and my husband and I had our work here, and we never wanted to move anywhere else. I believe Sarah benefitted from always living in the same house all her life. I hope she’s still here.
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For the Present
Just when I thought it was safe to look at Google News again, Psychology Today zapped me with another one of its helpful articles from Mark Travers, Ph.D. This one is about how to handle my catastrophic thinking. Mark explains that catastrophizing is distorted thinking or a malfunctioning thought process. I’m certainly with you there, Mark. I have had tons of that since Sarah died. It’s probably the aspect of grief that is the hardest for me.
Yesterday I unpacked and assembled a new loveseat that I bought from Wayfair. Polly the Beagle had pretty much done a number on the old one, which is under one of her favorite windows in the dining room for keeping track of her frenemy, the mailman. After I put it together I had a short internal dialogue/anxiety attack that went something like this:
Me: When Sarah comes back, she might not like the new loveseat. Maybe I shouldn’t have ordered it.
Myself: Of course she’ll like it, she was always excited when we got new things. She’ll be happy when she gets back.
My mind: Idiot. Sarah is not coming back.
And scene. Dissolve to crying.
Mark says that instead of catastrophizing about my imaginary/irrational thoughts, I should (1) come back to the present; (2) pick a time to worry; and (3) consider therapy. Coming back to the present reminds me of one of my all-time favorite books, “Ramona the Pest” by Beverly Cleary. If you haven’t read it, or haven’t picked it up since kindergarten, do search out a copy. Anyway, Ramona’s kindergarten teacher tells her to sit in a certain classroom seat “for the present.” Naturally, Ramona, who may or may not have been on the spectrum, assumes she is getting a gift. As the school day passes by, she becomes quite disappointed when her gift does not materialize. Ramona, the injustice was clear!
The second thing that “coming back to the present” makes me feel, is that within this cycle of irrational thoughts, coming back to the present is the worst part of all. Remembering or reminding myself over and over that Sarah is dead and is not coming back, ever, is really really hard and painful. It zaps me like an electric shock.
Last week I read Joan Didion’s very beautiful “The Year of Magical Thinking” and she described not being able to part with her husband’s shoes for a year after he died because of the magical, irrational thought that he would be back and would need to wear them. It was so good to know that other people who are grieving experience these kinds of weird thoughts too. She said at the end of the book words to the effect that eventually you manage to hold space for the dead in your present life but begin anew without them. It’s very hard to consider that right now. I guess I have to give it more time.
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Flirting With Disaster
I woke up screaming again this morning at around 3:30. I really feel bad for my husband at this point, as this is the third time in the last couple of weeks he has been awakened by my shrieking “You f&%ing a$$h#le” or words to that effect. I hope he’s not getting a complex. I also hope this isn’t going to complicate matters on our trip to the UK. We are supposed to be staying at a Bed and Breakfast in London and I really don’t want to be screaming down the place in the middle of the night.
It reminded me of one of my favorite 90’s movie comedies, “Flirting With Disaster,” in which the little old lady bed and breakfast owner admonishes Ben Stiller “You are not good B & B people!” I do want to be good B & B people. I don’t like chewing out random people in my dreams either, in this case for accidentally running over one of the multiple pieces of luggage that I seem to always carry with me in my dreams. Either luggage or furniture. I guess that’s not hard to analyze. Yeah, I have a lot of baggage.
I was initially scared of having a daughter because I was afraid of screwing her up and passing on all my neuroses and baggage to her. I thought it would be easier somehow to be a boy’s mother, less fraught and emotional. Better boundaries. I didn’t realize how much Max wanted a girl until we went for the amnioscentesis and the technician remarked that from the ultrasound she was pretty much positive Sarah was a girl. Max was so happy. I said “Wow, I didn’t know how much you wanted a girl.” And he said “I grew up with four brothers, I’ve had enough of boys.” It’s true there are a lot of boys in his extended family and relatively few girls whereas my family tends to produce one child of each gender.
The OB who did the test later called and confirmed Sarah had girl XX chromosomes and said “You are going to have so much fun with her.” I realize he probably said that about all kids to parents when confirming good test results, but this comment really got me on the Girl Train for some reason. I began picturing endless seasons of fun for us with our girl, sort of a Meet Me In St. Louis scenario, and thinking less of how I was possibly going to ruin her life.
And the OB was right. We did have so much fun with Sarah. We had private family rituals and jokes and little traditions just for our family. She was fun and funny and so loveable. I never worried about ruining her or imposing my neuroses on her. She was her own person. I did worry constantly about many things, but that wasn’t one of them. And I was so happy to have a girl. My girly-whirl. My Sarah.
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The First Year Without Sarah 