holidays

I didn't light any Hanukkah candles this year, for the first time since the kids were itty bitty. J said it was because the "rabbi" wasn't there this year and I guess its true. I continued the tradition of decorating and lighting candles and for many years, but not recently, having eight gifts ready for each night. I even left our little china Hanukkah mice that always stood next to the menorahs, in Florida. I didn't have the heart for it I guess, but next year it might be easier.

We watched the 4th season of The Wire,that I bought F for his birthday. Alex loved the show, especially the corner boys, who reminded him of some of the guys who were at Blythedale with him. He would have reminded me that the rapper Method Man was in the show, I noticed his name on the credits. So many thing I see on TV or movies that remind me of Alex. I almost don't know if I want to watch the new season of the Wire,or Rescue Me,or buy the video of the Simpson movie, which I would have done for him. In Florida we watched American Idol and had such fun with it, don't think I'd even be interested without having Alex to debate with and decide who to vote for.

These are the signs of life going on without him and that's the difficult part. I guess keeping Alex with me means thinking about him when I do things he would love or things we shared.

Winter in WI

Its -5 today in Wisconsin, an old fashioned Wisconsin winter the weatherman said. Alex and I had been going to Florida for the winter since we've lived in Wi, to our warm house in Venice,close to the Gulf of Mexico.





This is my first winter in Wisconsin. Alex and I weren't going back this year, I wanted him close to his doctors here.





What a blessing Florida was for the past 3 years. Everything worked so much better in the warm, we could get outside everyday,the chair worked better and Alex's driving hand worked better. It was lonely there sometimes, among the retirees and with F working in Wisconsin and coming every 2 weeks, but I'd remind Alex and myself that living in paradise while WI was iced over wasn't something to complain about.





We went there for Thanksgiving and I cried and cried those first few days, going through what Alex and I had left behind. We didn't leave much, his hospital bed, and the wood box that we decorated with pirate pictures and his beard trimmer. His funny room with the string of plastic tiki heads and surf board lamp.





We had fun when the girls got there, and we had Thanksgiving, and rode bikes in Myakka State Park and did the beach and ate in Sarasota.





In rereading my earlier entries I can how I've change as nearly 5 months have passed. I'm not nearly as angry (whew!) and in not such a rush to write it down and get it out. I am deleting an earlier post that I wrote when I was so sad that I couldn't stand to hear anything about anything. I needed to vent at the time but that time has passed.



I started tutoring and was so pleased to meet Karsten, a very cute first grader,who looks like the little boy from Jerry Maguire. When I asked him about what he liked best he said "lions" so I ordered a copy of "Library Lions" from Amazon, since it seems to be a first grade favorite and I had such fun reading it to some D.C. first grade friends. The program called Schools of Hope aims to improve literacy by using volunteers to read with and to kids. C the director promised to find me another student as well, since I 'd like to do a little more than 30 minutes a week.



So far the winter seems gray and bleak and its early December! I guess I'll have much more time to write....

Alex's uncle

Today I did a Google search using Alex's name and found something that looked like a blog, with Alex's Uncles Rich's art and an entry about Alex. Rich is an architect and an artist, and had done a drawing of Alex when he was in the hospital a few years ago. Alex had seen it and didn't like it. He thought he looked weak and deformed. Alex liked to look good. There is a circle worn into the rug in front of his mirror, from the wheels of his chair, from him making sure his hair and beard and clothes were how he wanted them. Alex wanted to look like who he was, strong and capable. The picture did capture Alex at his sickest and most vulnerable, but it was not the way Alex wanted to be thought of.

Rich wrote a few words about Alex, and a few words about his brother (Alex's dad). A surprise since he hasn't spoken to anyone since Alex died. Most significantly, not his brother. He was at the funeral, but arrived late, with his his wife and son. The wife hugged everyone, but never gave any words of condolence. She questioned me about something said in the eulogy, but never said anything else. I was surprised by that, even though knowing her, I shouldn't be. It makes no sense that someone who knew Alex his whole life would have nothing to say. But the bigger shock and the bigger confusion is why Rich hasn't reached out to his brother. But he wrote the blog entry and put his artwork there as a tribute, I guess. It's not enough,and it was accidental that I found it, but there it was. A little story to illustrate a little drawing and nothing else.

In DC

I spent 6 days in DC which turned out to be joyful because I was with J and visited her school and stressful because we met the future in laws.

It was so much fun to go to school with J, see her interact with the children and meet some wonderful teachers. I was worried that it would make me sad to be around kids but it was the opposite. I remembered that working with kids was what got me through those difficult times when my parents died.

It was funny to see the young teachers who are about the age I was when I stopped teaching. I always believed I'd go back, always had a teaching certificate where ever we lived,NJ,MD,NY. Life has a way of tumbling you around and leaving you somewhere that you never imagined.

So I left that experience so proud of J and the work she does. I also came home and filled out an application to volunteer here, in a program called RSVP, that puts seniors (eeeeeek!) in local schools.

I hesitate to say much about the in-laws. I wish the Dad was more like the Mom and I wish it was easier for J (and N). I want to say that maybe my experiences with Alex have made me want to embrace happiness and good things for all its worth. Life will be bring its own difficulties and challenges. As a parent of an adult my job is to be supportive and caring and proud of the child J was and the adult she's become AND to not be too much of a p in the a (to quote my own Dad). I try.

Back to my Blog

I have a new computer and it took a while for me to get back on. Since the last entry I have begun talking to pychologist. Its been a while after a ten year plus stint with Dr.E in NY, in which we talked first about breast cancer and then about everything else under the sun. I guess I'm an old hand at therapy, almost answering the new "shrinks" questions before she answered. I'm afraid that I am good at giving the correct answers,but maybe Dr.B can see through it. She did give me a good idea for a journal, stories about Alex written for some future grandkid, so they would know Uncle Alex. I enjoy writing for a child, the stories can be so simple, just a story. I told J that I would write some baby J stories as well, which makes sense. Most of the stories about Uncle Al are about her as well. It's been fun to look back and to concentrate on funny stories and happy times.

J is engaged and she and N are planning a wedding, very exciting,very fun. Next week we meet her future in laws,

a dream

I haven't had any dreams, this first month since Alex died but I did last night.In the dream I walked into a luncheonette like the ones that were everywhere when I was a child in the 50's. I walked up to a young man sitting on a stool at the counter. It wasn't Alex, but a familiar face all the same, with a head of light brown curls. He looked like he could have been J's brother if she had one that looked just like her. He resembled the boy from the movie Hearts in Atlantis, a movie and book that Alex and I loved and we were both fans of the actor. In the dream the boy said,"Hi,Felice" and I walked over to him and touched his face and said,"Hi my sweet boy" and kissed his cheek, just like I always did to Alex. In the dream it felt like this boy was my child, though I had never seen him before. Just another lost boy, I guess.

Alex's Room

As we started to take Alex's bed and wheelchair out of his room to give away last night, it started to storm outside. Loud lightnening and thunder and a downpour. It rained all night and continued to rain the next morning, while we loaded the van and an attached trailer with all the things Alex needed for day to day living. Things that the wheelchair recycler will use, without ever knowing Alex.

When we were done I sang Eliahu in the garage, a song sung after Shabbat praising the prophet Elijah, Eliahu was Alex's Hebrew name and he loved to hear it sung. The rain stopped and sun shone. Was it a sign that Alex thought it was ok? (and that he was happy to have some old equipment gone and a cleaner garage) Don't know but its nice to think it was.

When Jen was here she smelled his headrest. It held his scent. All these little goodbyes are sad. I will wait to do his room,just a little longer.

3 weeks

its 3 weeks today,
hard to believe,
still trying,
ok so I knew this was going to happen since Alex was little but never really believed it,
couldn't believe it
i am still shocked and surprised every
morning

Comfort= FRED,JAJ,bicycle,old roseann shows,blog,harry potter

Alex's Blythedale School fund

I've been overwhelmed by the number of people from Wisconsin who have donated to the fund at Blythedale Childrens Hospital in Allie's memory. They are from Fred's work at Capitol Indemnity,from his department and throughout the company. They are also from the parent company Allegheny Insurance and from bankers and brokers etc. Many Fred knows, some just a little. I know the people in his department and his close friends. There are the kindest notes from people who met Alex,most recently at a Brewers game. There are kind notes from people who take a moment to write a personal note, lots of prayer being offered.

My mother in laws network of friends at her over 55 condo have been so kind and a good support to her. They filled her house for two days when we held minyan there. They have send donations to B'dale and to other charities and countless cards. It's an enviable community and I'm glad she has them.

I'm glad that we will be able to do something for the Blythedale School. It was often was a place of refuge and help when we needed it. It provides help for kids and a place where children are not defined by their disability. Thanks to a dedicated teacher there(Ken) Alex finally could read. Thanks to another teacher (Rosemary) Alex fell in love with literature by listening to books on tape.Thanks to an amazing guidance counselor, Alex and his friend Judy were able to take regents exams like every other student in NY. Thanks to all the caring folks there who allowed these kids to feel like any other middle school er or HS student. Thanks to all the folks who have donated so we can give back to Alex's hospital and school.

the wheelchair

I just walked into Alex's room to check that the chair still had a charge. I am trying to get it to the wheelchair recycling place here in Madison. They will be able to give it to someone who needs it. They also have the equipment closet for the MDA here, so they will take any other stuff we had,icluding a Hoyer lift and some CoughAssist machines. So I wanted to check the charge and its still fully charged,as it was on the 12th ready for Alex. It's still barely possible for me to walk in there. I miss him so much. Fred came in with me but it still broke my heart.

CAMPING IN NEW HAMPSHIRE

CSI 1985 JENNYS NURSERY SCHOOL PICTURE WITH ALEX

2003 Blythedale Graduation

the books about grief

I've been trying to read some books about grief, and about losing children. I have begun to realise that I've probably been in a grief process since finding out that Alex had DMD. I can remember sitting in the plastic chairs at Blythedale Children's hospital with Alex and Jenny. Jenny was a half day kindergartner and so was there through the whole process. It was the beginning for her of a long education on disability and the disabled.I wondered what that bright 5 year old was thinking and absorbing. When Dr.Lowe came to where we were sitting (he was a tall older man,with an accent, maybe Swedish, with an eye patch over one eye) and told he thought it was muscle disease,I knew what that meant, having had experience with a child in another first grade class where I had taught, who had muscular dystrophy. I stood up and started helping the kids get their coats on, my throat closing, quickly trying to get us out of there. I took in what I needed to know, that Alex would need a muscle biopsy, that they wouldn't say what it was until the test results,listening while I hurried the kids out the door,holding their hands tightly. In some of the books I read then, ,they called the child's diagnosis "the death of a dream". I don't know what my dreams for an almost 4 year old boy were then. What happened that day was that I could no longer take for granted that Alex would have a a regular life and a normal life span. All our lives changed that day.

Alex and grandma in Venice,Florida

a picture of Alex

I found a newer picture of Alex today, from our first season in Florida.When we moved from NY to WI We bought a place in FL to go to in the winter.Alex and I stayed there for three winters with Fred coming on every other weekend.We hadn't counted on how lonely it could get and as Alex was not feeling as wel as heh had, how scary it could be.The picture I found he looked healthy and handsome standing next to his grandma. The pictures at the service were older and didn't look so much like he looked now. I've been looking at it all day. Its mad me sad and at the same time mad at the world. A friend called about her car getting smashed in a parking lot. What am I supposed to say? I'm sorry?

Old friend

In the late 80's we lived in Tokyo and my best friend from those days was Sue Parsons, a tall blond Brit, born the same year as me. We spent many afternoons over tea in my kitchen hashing out our lives and the lives we had living overseas. Her daughter Amy was 3 years younger than Alex and 5 years younger than Jenny, a cute feisty English girl, and she would play or watch TV with them while we chatted. I spoke to them today and it was as easy as it ever was, though Amy now works in a local Police Station (doing "admin" work, she said) and is grown. We promised to stay in better touch and we will try. She's one of those friends that are keepers.

contributions

I've been working on contributions, the ones coming into Alex's rehab hospital and school (Blythedale childrens hospital in Valhalla,NY) and the equipment of his to give away, hopefully to the local Wheelchair Recycler here in Madison, WI. It reminds me of when Alex was first diagnosed, how we had to tell and had the hear the same things over and over.Alex was almost 4 when he was diagnosed and we spent many days with DRs testing his reflexes, which in DMD are slow or non-existant. After a few days of being "hammered" Alex went home and found a toy reflex hammer in his doctors kit and spent days on end banging doors,walls,cabbage patch kids with that hammer (tho not his sister or us). Working it all out in a direct Alex fashion. I decided then that we would try to keep the DR's out of the picture as much as we could and try to give this little boy a carefree childhood.

my son alex

My 24 year old son Alex died on July 12th. He had Duchenne Muscular Dystrophy, a disease that slowly destroyed his muscles, leading to physical disability and also affected his heart and breathing muscles. I am writing this Blog to talk about Alexs life and mine as I begin living without my son.