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Sunday, December 16, 2012

Chanukah musings

Chanukah is over - and I'm glad it is. It was an emotionally wrenching Yom Tov.

Every year, before I had children, Chanukah was one of the hardest holidays for me. I would attend the family Chanukah parties and watch everyone showing off their babies, getting gifts for their kids, while I sat there stoically, trying to partake in conversations I knew nothing about, trying to ignore the maternity clothing and birth stories and whatnot around me.

After ten such torturous Chanukahs I finally became one of 'them'. I had my own baby to bring with me and was able to be part of the world at large. I finally belonged, and it felt awesome. I enjoyed five such blissful Chanukahs. Unfortunately, more often than not, my parents and in-laws both chose to make their parties on Motzei Shabbos, which meant splitting my time between both, which I hate. It means not enjoying either party; escaping from my in-laws' party just before the fun and games start, and arriving at my parents' when all the good food is already consumed. This has been the situation for the 3 or 4 of the past 7 Chanukahs. One Chanukah a blizzard started on that night, and I had foolishly left the house without boots, a scarf or gloves, and without a plastic cover for Dovi's stroller. I arrived at my mother's house with sopping wet stockings, my hands nearly frostbitten, tears rolling down my cheeks, Dovi screaming at the top of his lungs from the cold. I commented that now I know what the Death March must have felt like... (not really though.)

Two years ago, Dovi was already diagnosed with autism. He wasn't in his full fledged ADHD / tactile sensory /lets-destroy-the-world stage yet. He kept himself busy climbing up and down the stairs at my in laws two-story apartment, and up and down the stairs at my parents' basement. He played with toys, ate whatever he was given, and didn't bother anyone. Obviously, his impairments were noticeable; he wasn't talking, wasn't interacting with the other children,  but he wasn't too bad for a 2 1/2 year old.

Last year, however, the parties were an absolute disaster. Dovi had spent the entire Shabbos ransacking the kitchen. He had even thrown a bottle of fish oil off a shelf, shattering the bottle and causing the entire house to reek of fish oil. I spent the majority of the day cleaning up the mess - and then the entire next WEEK washing and soaking and rewashing the unfortunate laundry situation, I will write a post about it at some point - bottom line, when I arrived at my in-laws I was already exhausted and ready to collapse. Dovi was climbing on top of tables, grabbing food out of other kids' hands, destroying food, and generally not staying still for a moment. For a 3 1/2 year old, this was absolutely abnormal behavior. My in-laws, who generally don't know how to deal with Dovi -  not every person knows how to deal with a child like Dovi; I don't fault them for it -  were basically ignoring what was going on, as I chased Dovi in and out of rooms and off tables and kitchen counters and away from the hot oven. It was crazy.

About two years earlier, just as I had started to actually *enjoy* Chanukah parties as a mother of two, my in-laws decided that there wasn't enough room in the dining room anymore for the entire family, and divided the men and women - men in the dining room, women in the kitchen. I hated it! Since I only have boys, my kids were with the men the whole time and I couldn't watch and enjoy and film their antics like I always do. Instead I had to sit around and listen to my sisters-in-law talk about clothing, jewelry, sales, inane stories that I probably would have enjoyed a year or two prior but felt incredibly trivial to me. I took out my cell phone to text some people as I was so bored, and my mother-in-law made a comment about my constant texting, which made me flee to the bathroom in tears.

At that moment I decided, that as difficult as it would be for me, Dovi would not attend the Chanukah parties the next year. I immediately texted the director of a respite program I was in the middle of setting up for Dovi, asking her to book Chanukah 2012. She replied, 'done'.

At my parents' party things were slightly easier; Dovi actually sat in a booster seat - my in -laws don't even own a high chair - and ate nicely, ran around the house a little, and didn't cause too much havoc. But I was drained and exhaustead and could barely enjoy the party.

Fast forward to this year. My resolve to leave Dovi behind for the parties began to crumble. My in-laws have not seen Dovi in a very long time, and I really wanted to show them how much he improved and show off how cute he was. The respite house couldn't take him since he's booked in 2 weeks time for my sister-in-law's Shabbos Sheva Brachos. This year, thankfully, my parents and in-laws made their parties on two different nights, as there were two motzei shabbosos, Dovi was on Ritalin, and I felt I could handle taking him with me.

....and then, two weeks ago, while I was napping on Friday night and two community volunteers were watching him, Dovi pulled the percolator down on him and got 2nd degree burns on his feet. What followed was a nightmarish week of trips to the Cornell Burn Unit, and some other unpleasant things associated with the burn. I also had some personal appointments to take care of, so I was basically in Manhattan almost every day. I was too afraid to trust any girls in my apartment anymore - even though we had thrown the percolator out - and therefore stayed up Friday night myself to watch Dovi. My usual Shabbos afternoon volunteer wasn't available and I got a substitute. She wasn't half as good and ended up bringing Dovi back way too early. By the time Motzei Shabbos arrived, the house was upended, I was wrung out, and definitely not in the mood for any Chanukah parties.

My husband took one look at the situation and gently suggested that I leave Dovi home with a babysitter and go to the party without him.

I balked. I refused. To me, this would signal the beginning of cutting Dovi out of our lives. We had already left him behind during quite a few family events where a normal 3 or 4 year old would attend without qualms - my sister's wedding, my father-in-law's Ushpizin meal. My heart was breaking. Was this truly the beginning of an era of stopping to take Dovi with us to normal family events? What about my in laws  - shouldnt they get to see their grandson once in a while?

Women deal with situations with emotion; men deal with events with logic. Logically, taking Dovi with us made no sense. Recalling just how draining and exhausting chasing Dovi off the tables had been the year before was enough for my husband to make the suggestion. And when I thought into it, I realized that absolutely no one would benefit from taking Dovi along. Not Dovi - who would be out of his element, sensory overloaded, overtired, and all over the place - not Chaim, who tends to act out and get wild and crazy when he's around Dovi and senses he's not getting enough attention - not my husband or I, who wouldn't be able to sit for a minute, and not any of my in-laws' family, who are uncomfortable in with Dovi's presence.

So I asked my downstairs neighbors, a wonderful family who babysit for me at a drop of a hat, if they would do it for me. They gladly agreed.

So Dovi went to bed at his normal bedtime hour, we cleaned up a bit - and then a wave of extreme exhaustion overcame me. The dramatic events of the week, plus the physical stress of keeping Dovi safe myself all Shabbos took a terrible toll on me and I just couldn't move.

I was totally not in the mood of going to the party. I couldn't picture myself sitting among my many married sisters-in-law and their large families, feeling like a limb had been cut off from me, nursing the ache in my heart, while listening to trivial, inane chatter.

I just couldn't go.

I climbed into bed and sent my husband and Chaim to the party.

A little later I decided that staying home and moping was of no use; I would just dwell and dwell on my difficult life and be talked about for weeks on end for missing the party.

So I "pulled up my big girl britches" as they say, called the neighbors, and went.

And you know what? I actually enjoyed myself.

I put Dovi out of my mind. I pretended he was with the men all night, or he was asleep in his stroller. And I was actually able to sit, for a change. I have learned to tune out trivial chatter and not let it bother me. I talked about Dovi's burn situation and other Dovi situations. The whole thing took a little over an hour and I had a lovely time.

Last night was the second Chanukah party, my parents'. We had another really busy week, but things were calmer than two weeks ago. The bandages on Dovi's burn were finally removed and it's healing beautifully. I finally found a dress for my sister-in-law's wedding which is next week. A lot of little things got taken care of this week and I had less running around to do.

And I knew that once again Dovi would not be coming along to the party. Although my parents have more tolerance and understanding to Dovi - hey, my mother has been coming along with us to every appointment we had in the past month! - they get very nervous when he's around. He jumps up on the kitchen table and pulls at the plants. He goes into the master bedroom and plays with the answering machine. Their house is pretty small and he gets bored really quickly. My mother expressed delight at the idea of Dovi staying home and she encouraged me to go for it, citing all the benefits to me and my family and everyone else.

So once again, my kind neighbors came upstairs to babysit.

The walk to my parents' home felt like a walk to the gallows. I was fighting back tears the entire way - but as soon as I walked into the hopping, happy home I just couldn't hold it back anymore and had to go into a side room to cry.

Besides for the aching feeling - akin to missing a limb - it was the reminder once again that I am different, my life is different, and I will never feel normal, despite all the hard work I do to quash those feelings.

Having spent the past number of weeks so immersed in Dovi's myriad issues and some other family and health concerns, just being in a normal environment was a huge culture shock.

The table was so festively set, and everyone had contributed delicious food. I stood around helplessly and thought to myself, Is life really going on for everyone else? People have the brain space and time to set up parties and create delicious culinary masterpieces - people are living regular, normal lives. I'm chas v'sholom not begrudging anyone their normal, tranquil lives. Really - I wish every person in this world to live such lives. It was just a big shock to my system, which had been so deeply entrenched in everything Dovi, as well as feeling horribly sorry for myself.

I've been through this before many times. Feeling like a fish out of water and reconciling the reality that my life is different and will always be different than the 'normal' is something I deal with all the time. I've gotten used to it. I have done a lot of work on myself, a lot of work accepting the reality - the Kinesher song having been the first step - but last night there was a brand new reality to contend with: The reality that Dovi will, for all intents and purposes, not be participating in family events anymore. I didn't think it would happen so soon; I had been battling this for a year already, claiming with gritted teeth that I am not ready to delete him from my family life, insisting that he come to my sister's wedding to the photos so we have a professional family photo of all of us together. But here reality was staring me in the face; that no matter how brave and determined I was trying to be, large, late-night, noisy family events are not the place to be for Dovi. He is a 'one-on-one' child - someone always has to be with him to make sure he is safe and occupied and not destroying stuff. And if I was not ready to be that one-on-one -- I actually wanted to sit in one spot and relax a bit after the past few crazy weeks - then he just could not be there.

After I sorted through my feelings I actually enjoyed myself. I was the most relaxed person in the room! Chaim was on top of the world too, having a blast with his cousins. I talked about Dovi, showed my siblings adorable video clips of him on my camera. We played games - one of which I had prepared - got gifts and gelt and went home at 12:30 a.m., while Dovi was blissfully asleep at his normal bedtime and no one in my parents' house got annoyed or nervous or exhausted from keeping him away from the toilet and the sink and the plants.

This is a 'new normal' I'll just have to live with. It's not easy. There is a deep, painful ache, like a missing limb, when your child is not with you because for whatever reason, he can't be. This is true not only when the child is special needs. There are unfortunately so many families who go to family events with a child missing because he is not well, not alive, no longer in the 'fold', not in speaking terms with the family - there are plenty of other women who have aches in their heart. It is just something I will have to get used to, and something I will definitely discuss with the wonderful Linda this week IYH.

Let me just say that I'm glad Chanukah is over.


  1. Wow, what a really heart wrenching post.

    (I'm surprised though that people even think of bringing their small children to these late night events. My families party is always on a Motzei Shabbos, which means we do one of three things: my husand and I alternate going and staying home with the kids, I just go myself and stay the whole time, or we get a babysitter. But bringing our young children is never even a consideration. I can't believe Chaim and his cousins stay up at a party till 12:30! My husband's family does their party on a Sunday afternoon so that the kids can all come and spend time with each other.)

    Regarding your sister's wedding - is it possible for you to bring Dovi just for the pictures, and/or bring a special babysitter along just for him?

    1. Late night motzei shabbos parties are a normal thing here. Many kids sleep in the afternoon so they have koach for later. As for taking Dovi to my SIL's wedding - I did that at my sister's wedding so we could have pictures taken. But the dynamics at my in laws are different. I cannot write much about it in public so it's hard to explain. But basically my MIL herself has a severely handicapped child and has never dealt with it properly and is always in terrible emotional pain because of it. So seeing her own children struggling with the same thing is super hard for her. It's a whole chapter on its own which I can't write about. So we do try to minimize her exposure to Dovi as it always brings up her own past and present as a special needs parent and she is in pain all over again. That's why there's no point in taking him to my SIL's wedding, as I would have no support/appreciation for bringing him, except for pained looks and causing embarrassment to my MIL, who would rather not have all the guests watching him being chased around the hall. The night before my SIL's wedding, Dovi's Res Hab's sister who was his Res Hab/volunteer before (I belive I calle dher Judy on the blog) is getting married, so IYH there I *will* take him briefly; *There* he does belong.

      Hope this helps!

  2. Hugs! Big HUGE hugs.

  3. It's funny, bec I usually love Chanuka but I too have emotional stuff going on this week. It's been intense. Anyway, this was a beautiful post and made me a lot more aware of how hard this all must be for you. (((((HUGS)))))

    1. THank you malky! Your feedback is very appreciated!

  4. You're an amazing writer, mom, individual! I'm sure it took alot of strength to get up and go even though you were so upset about leaving him.I learn alot from your posts. Thanks tons for this blog, Im practicly obsessed with it.. keep checking twice daily for updates.

    1. Thanks! :) You can sign up for the updates by email so that you dont have to check it all the time, or you can subscribe through google reader or bloglines. I can't update daily, obviously, but I'm enjoying writing this blog and reading that the readers are enjoying and finding it inspirational gives me the push to continue with it!

  5. I have special needs kids, too, and frequently leave them with a sitter on the rare occasion that we go out to social events. It doesn't mean they aren't a huge part of our lives. It doesn't mean we love them less. It means that the best thing for everyone, including the kids, is to leave them out of sensory-overload situations that none of us will enjoy if we take them.

    But as for feeling like you're, once again, "different" - I think that we make choices about these things - we can choose to focus on our differences, or we can focus on our similarities and simply enjoy ourselves in the moments that we can. So much of our lives is completely absorbed with therapies, assessments, school placements, accommodations, advocacy for our children, diets, sensory techniques, behavior management... it's much more pleasant on the rare occasions that I can spend time with other adults to think about the more "normal" aspects of my life. All of us are dealing with potty training. All of us are dealing with kids who don't sleep or get sick or reach or don't reach milestones. All (or at least most) mothers worry about their kids, and all mothers (or at least most) are preoccupied with their kids. We have so much more in common than circumstances would suggest on the surface.

    I totally get how hard it is to be the only one who can't bring their kids to social events, and how isolating it can feel. I just think that if we can re-frame it for ourselves, we'll come out on the other side more whole.

    1. Agreed on all counts. It just takes getting used to every time. But because I have such a *small* family I already feel very much like an outsider and this doesn't make the feeling go away at all. I find I have almost nothing in common with the 'regular' people and it's a struggle every time.

  6. I've left Libby home when we went out late and I can totally relate.

    My daughter can't do late nights. Anything 15 min past her bedtime, she loses it. However, because she's a twin, it's even more painful sometimes. It's just so obvious how different they are even though lots of progress has been made. I remember we went to the Lag Ba'omer bonfire and her twin loved every single minute while she was home tucked into bed sleeping. It's tough.



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