Grief and Guilt

I've been putting off this blog post for 2 days now. Hell, I even let it interfere with my own Blog Challenge.  To be honest I'm not even sure how to put this into words without offending someone but I'm going to try because it's impossible to keep this to myself. 

On Sunday's I've started volunteering in the Special Needs room at our church.  Our church has about 3,000 members, and a very active youth program, so thankfully they have the resources to offer care for the special needs kids while the parents attend the service.  They've been needing volunteers for the special needs room since the offer has been open and during the week of VBS I decided it was something I could do to help.

I talked to the person in charge and started showing up a few weeks ago. The first 2 weeks there were no kids to watch.  The regulars must have been sick or out of town.  The coordinator mentioned having me "buddy" with some of the older kids that were included in the regular Sunday School programs, but still needed some assistance.  I said I was fine with that and she had me come back the next hour to be with a new girl.  It was her fist week, and her mother had not been able to find a church to attend because he daughter was not being accepted into the other Sunday Schools in town.  They just simply didn't have the help required to offer the girl one on one care.  All was told was that she was autistic, had A.D.D. and she enjoyed music.

I've never been around autistic children.  I've read about autism and have learned some things about the spectrum through various special needs message boards, and from other PWS parents that have children on the spectrum.  I know it varies from child to child, and that the difference from one to the next can be as different as night and day.   I was not prepared for this.  The little girl was 6 years old and cute as can be.  She ran over to play with the toys and the stuffed animals, and immediately took to one of the other adults in the room (who happens to have a son on the spectrum).  For the first 10 minutes the kids just played in the room and the little girl played with the stuffed animals and started talking to me about the animals.  When it was time for the group to gather around for music, the music played and the little girl dropped everything, closed her eyes, and swayed to the music.  That was fabulous.

Once the music stopped, something went wrong with the sound, and there was loud static over the speakers.  She immediately covered her ears and went running for the door.  That was fine and we handled it by directing her back into the room once the sound went away, but it all went down hill from there. 

For the next 45 minutes, which honestly felt like eternity, I tried to include the little girl in the activities that were going on.  She wanted nothing to do with the other kids or the puppet show, so she decided to go into one of the other rooms that had some toys and she begged me to shut the door.  I closed it so the noise wouldn't bother her, and occasionally another volunteer would pop their head in to see if we were OK, but those 45 minutes were absolutely painful.  It's like she's shut off to the outside world.  She turned on "auto pilot mode" and just started talking a mile a minute.  She was talking to me, but never waited for me to answer her, instead she answered for me.  At one point she noticed some crayons on the floor and she couldn't stand the sight.  She had to put them away.  Then she started making up this elaborate story about tigers and pumas and her imagination went into over drive and she was talking SO loud and hardly stopped talking to take a breath the entire time we were in this room.

I know this story doesn't sound that bad.  But when I was in that room with her, it was like my existence didn't matter.  It was so far from normal that I couldn't help but hurt for her.  It pained me to see how different she was from the other kids.  It drained every emotion from me, and took all of my energy not to lose it.  I thought I was strong enough to help other kids with special needs, but honestly, that experience was almost too difficult.

Towards the end of Sunday School we managed to get the little girl to join the other 6 year olds for a craft project.  She was to cut a heart out of a piece of paper, and glue it to another piece of paper. The heart was outlined in black.  I gave her some scissors and handed her the paper and explained that she was supposed to cut along the black line.  After I explained it to her she loudly explained she wanted to draw a lion.  So she did. The other little girls in the room tried not to stare, but it was obvious they could tell she was different. They had no troubles following directions or cutting out perfect hearts, but my buddy couldn't do it.  Finally I got her to attempt to cut the heart and she kept yelling "help me help me help me" so I explained to her how to cut from the outside of the paper to the inside of the paper to get to the black line.  Then when that didn't work I made the first cut for her, and she went from there.  She cut the heart out.  It wasn't perfect, but she did a pretty decent job following the black line.  Right about the time we were ready to glue the heart, her mother came to pick her up.

When I saw her mom my heart just shattered.  The woman was not much older than me, maybe in her early 30's.  She looked like an angel with a pale face, blue eyes, and blonde hair.  The first thing she said to me was "Are you her buddy?"  When I said yes, she asked me "will you be her buddy next week?"  How could I say no?  How could I say yes? In one hour I felt like I had been hit by a truck, backed up, and repeatedly hit again.  But this woman, her mother, this is her normal. She should get a gold medal in parenting just for making it through the day. How could I tell her no?  But I couldn't promise her I would be there the next week, because to be honest I don't know if I should. My answer was "It's a good possibility", because that was the truth.  What I know for sure is that SOMEONE will be that girls buddy.  Her mother deserves a break.  She deserves an hour on Sunday morning to be with God and other people that can listen to her and be there for her.  She deserves to know that she and her daughter are welcome to come back, no matter what it takes to make it work. She deserves much more than 1 hour a week, and I hope she gets it.  I hope she has more help.

After church I met my family for lunch at Wendy's.  The drive there was painful.  It felt like my body was in knots just trying to keep myself together from the hour with the little girl. It was so different from the drive I had taken TO church.  The drive to church I was thinking about my grief with Lillian.  How sometimes things like teething, or her feeding tube giving us problems, or her daily gagging on bottles/food/drainage/whatever gives me so much grief.  Sometimes it feels like the hay that broke the camels back.  One extra little stumble with her some days and I feel like my world is crashing in.  How trivial that seemed after my 1 hour with my buddy from church. How pathetic is it that my day can be ruined because of a leaky feeding tube?  It's not like it's life and death. 

I walked into Wendy's and there was a huge line.  I was the last one in my family to show up.  I went to stand in line to order my salad when my aunt walked up and asked me how I was doing.  I completely lost it.  Standing there in a busy Wendy's, in a long ass line waiting to order my freaking salad, I completely lost it.  Sobbing.  Trying to explain how I just felt so bad for that poor little girl and her mother.  Her mother who hadn't even found a church to accept her and her daughter. Who had to live through every day knowing that her daughter was so different she couldn't even have friends.  She couldn't even have a normal conversation with her.  I wonder if she even has family to give her a break every once in a while.  If she woke up every day wondering how she would get through it?  I felt so bad for her, and so guilty knowing that just that morning I was grieving over Lillian's differences, which seem so trivial now.  At least with Lillian she engages with us.  She responds to us.  She laughs, she cries, she babbles, she's social.  Even though her future is still a big question mark, right now there's not a whole lot to be sad about.  I just felt guilty, and now my grief was for another mom and another daughter.


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