Thursday, March 27, 2008

A Great Visit the Ended Sadly.

I had a great visit with the girls today. I got them this Aquadoodle pad for them to draw on. I sat on the floor with them and drew all kinds of stuff. We watch Uncle Moishe, and this video called Punchkees. (A very cheesy Jewish kids series.)

I love to watch how Big girl and Little girl play together. Big girl has such an imagination. The was she acts things out as if she is doing them is so adorable. Little girl follows along with her. She loves her big sister so much.

We went to the Pizza shop near my apartment and most of the time was spent by them playing imaginary games. I saw Big girl at one point standing in an interesting pose. It is hard to describe. She was standing with her upper body a slight forward and her hand on her shin. I have see actresses stand in this manner. I wondered where she saw this before. It is hard to explain exactly how she held herself but it was very grown up. Big girl as usual went around the entire Pizza store talking to everyone. She is very warm to strangers which makes me happy and worried at the same time. They both are growing up into such incredible personalities. I am so proud of them.

As I told them we had to leave, Big girl told me that she wanted ice cream. I told her we did not have time, but she wanted ice cream. I compromised with her and said that we would take the ice cream to go. Unfortunately, I forgot the ice cream in the store. When we got to their house I had to tell Big girl that I forgot the ice cream and she began to sob. I felt so bad that I wanted to join her, but one of my weaknesses is not being able to cry easily. For what seemed like fifteen minutes I held her crying at the door to their house. After a while their mother came down to see what was taking so long for Big girl to come upstairs. Then the tears changed from ice cream to I want Tatty to stay..... which may very well have been the real issue. It is very hard on both of us.

We need more time together. I do not know how we are going to manage it but we need more time together. I get, at best, four hours with them a week. Four hours just does not cut it. Their mother is reticent in letting me see them on Shabbat. Their mother does not let me have them overnight. I can not get Sundays off, and I have tried several times. Sunday is really the only day I can get them for a long stretch of time. As it stands I have Thursdays off. I am not able to see them until 4:30 as Big girl does not get our of school until 4:15. I generally have to have them back by seven but sometimes do not get them back until after eight. It is so hard to get them back by seven. Feeding them takes forever. It is not that I mind taking the time to feed them but rather that it takes so much time out of our visit. We like to play games and watch videos and to have two hour to do that is not enough in any universe.

I just do not know what to do. Inshallah we will find something that works out better.

Saturday, June 9, 2007


The diagnosis for ALD is only a presumptive diagnosis. I spoke with my X tonight and got some more information about what we are dealing with. The Doctor that made this presumptive diagnosis did so based on some new symptoms that Big Girl has been displaying recently. She has had some issues with her eyes not working in unison, and has had some tremors in her hands.

Until a blood test is done it can not be said for sure that she has ALD or any other Peroxisomal disorder. Other possible causes of her symptoms can be a trauma to the brain which is possible given how often she falls and bumps her head, or chos v'shalom yenah machelah. I presume other causes could be one of a variety of cysts that can form in the brain that are NOT malignant. None the less, the broadness of her overall symptoms such as her Retinitis Pigmentosa (also a presumptive diagnosis), mild hearing loss, hand tremors, ADD, learning disability, and her floating eye all point to a possible myelin related disorder.

I need to come up with $165 asap in order that we can have the blood test done. The lab that we are having it done in specialises in this particular test. They do not take health insurance. I have a friend who said he would donate some or all of the amount, and I am going to contact Bikur Cholim to see if they can help as well. At some point we are going to have to have a sedated MRI done as well. My X tells me that there is a large co-pay for an MRI in her plan.

I read in one website tonight that the severe forms of ALD manifest in males. I have to look into this more, as it is the first site that mentioned this. According to them, ALD does not usually result in death in females. (Sigh) If all goes well, she may have asymptomatic ALD. She also may have ALD but have mild or no cerebral issues. In retrospect, I can see allot of the symptoms that Big Girl has in my history. If all goes well, she may have some lasting motor and learning issues, but with the right support she can overcome them and live a very productive life.

Keep her in your prayers.

Tuesday, May 29, 2007


It is now my fifth day back in Brooklyn, and all is going well. Cable came today to hook up my Internet, and the rest of my things arrived via UPS. I will be hitting the job trail full fledged starting tomorrow. I have a number of leads so far, and hopefully one or two of them will come through. I have an interview tomorrow for one job that is just weekends. I would work from three pm Friday to noon on Sunday. That job alone constitutes a full-time job and comes with benefits. My plan is that I would then get a part time job during the week.

I have not seen my kids yet. I tried to call today but got no answer. Still Wondering is of the opinion that since I am taking these few initial days to get myself set up with a job, and other things I need to settle in that it is proof that I moved here for selfish reasons, and that I am acting in a self-destructive manner. What do people want me to do? What do they think would be a better route for me to take? Is getting a good job and becoming self-dependent a destructive behavior?

In any event, this is the course I have laid out for myself. It is the right one, and I will persevere.

Thursday, July 20, 2006

A touching story.

In the midst of all the violence and chaos I saw a tidbit of a larger news story that I felt I should relate here.

CNN Live was reporting on a border crossing between Lebanon and Syria. Apparently, there are Syrian families who have elected to take in Lebanese refugees and the people at the border where matching refugees with host families. In the midst of death, destruction, and chaos humanity rises above.

Monday, July 17, 2006

IDF launches missile attack against Lebanese military barracks.

What in the world does Israel hope to accomplish by attacking Lebanese military barracks? Do they think that if they attack the Lebanese military that the Lebanese government will wake up and start disarming Hizbollah? Are they really that dilusional? The only thing this will accomplish is make the Lebanese government and its people more of an enemy of Israel, and will force the Lebanese army to fight alongside Hizbollah against Israel. This will not help Israel accomplish its goals, and will not bring the region any closer to peace. A secure Israel will only be accomplished through a strong, democratic Lebanon free of Hizbollah. Israel needs Lebanon to be a partner is peace, and destroying the counrty will not win over Lebanon as a partner.