Day 2...

Today we woke up and had a great complimentary breakfast downstairs. It felt really good to eat some real food again. Then we went up stairs and unpacked out of suitcases and into the closets and dressers. This is going to be our home might as well start off that way besides living out of a suit case sucks. The girls liked picking which drawers and just how they would put their clothes away and creating systems for things together. Where to put dirty laundry and it really helped to have some stucture like at home. Living closer with them will make that easier to maintain and it was fun to do together. It was practically like decorating the insides of their drawers with their familiar clothes. Feels more like home and ours.

Then we had the Enterprise car guy come pick us up and we got our car. They were very helpful and nice. There was a nice lady who was getting a car also and she started talking with the girls and just made everybody feel better. She was holding Alisha's hands and listening to her talk all about some really silly crazy stories that she likes to string together. Then Alisha started looking at her hands in the ladies hands and said your hands are not the same as mine.... your hands are black. The lady said yes, I have black skin. Then she held her hand palm side up under Alisha's hand and Alisha was so surprised that her hands were lighter on the palms. This was really strange to me because Alisha had gone to a very diverse preschool for two years. Alisha held the lady's hand palm up next to her palm down hand and said. "Your hands are not the same either" (Alisha's hands do not have the same number of fingers on them) Then I about hit the floor when Alisha put her fingers up her nose and then spread them apart and said your nose is big. The lady said well, that's my heritage and she said when you get big your nose will get bigger too. Alisha had a pondering look on her face but she didn't say anymore and the lady laughed at the look on Alisha's face. I really enjoyed talking with this lady she was just compeletly peaceful and loving and I'm very sure that she is an awesome grandmother to some very lucky grandchildren.

Then we went shopping.... I'm very grateful to have GPS and I have preprogrammed a few useful New Jersey places into it. The down side is that you still have to know where you are going so that you can choose your locations in the correct or at least a senseable order.. My grocery shopping stops were not really very far apart but I did have a hard time finding them. The biggest problem though is that the GPS was off a little sometimes and so I would turn when it said but it was one parking lot too early but I had a hard time getting to where I was looking for mostly because there was no Target located on the street where the GPS thought there was one. I asked some locals and there has never been one there. That and my GPS says "Make a legal U turn when possible." That is almost laughable, there are just about no protected left turns at least anywhere near this area. There are no "NO U turn" signs anywhere because you simply can't make one. Sometimes it looks really funny I've seen everyone drive out to the middle of an intersection and then everybody sorts themselves and they finish as the lights turn red. Anyway, the around the block method doesn't always work when you don't know the lay out of things.. so 20 miles later on a very local trip and we had some food to eat at least enough to last us through Monday and a little longer.

Day 1.. leaving....

I thought that I would be able to go to SF and fly and maybe cry a little when we hugged goodbye.. and then kinda giggle with the girls after we were through security that we were going on a long girlie vacation... Here is what actually happened......

Jeff and I stopped to have lunch with the girls and have a great time just being together while the girls played it was wonderful!!! The drive chatting together was really nice too.

The happiness didn't last much longer. I think some of it was triggered by not getting any help at the check in counter and I guess I was too over stimulated by everything including our crazy amount of luggage to actually read past the eticket logos on the screens.. I absolutely could not focus!! We have always used etickets but I knew that we didn't have etickets this time and I was starting to feel kind of panicked that we were going on this huge trip and I have bearly made it past the front doors of the very first stop and I'm done.... Jeff came in later and just pushed the second button on the screen. I was flooded with feelings of I can't do this!!!! Being such an actually easy thing made it so much worse.

Then we went to the security check point...
There was an older woman with a blind man in front of us taking off their shoes putting them in the tubs. I thought he was doing a great job and was actually pretty fast for not being able to see the tubs. The people behind me were very irritated. I couldn't believe that they couldn't even be patient for a man that was clearly blind!!!! Seriously he had the long white cane and was managing just fine. They were much less patient with me.

I had two large carry on bags a stroller a car seat and two little girls. It's possible that I didn't word this right... I think I should have said bag check instead but I had them hand check my bag.

I had put all of our flip flops in a tub and laptop electronic games for the girls.. then the lady at the Xray said that I needed to put everything that I wanted hand checked in a tub (the tubs are now about six to seven people behind me and none of them looked happy). So I turned around and looked the grumpy guy next to the tubs and said "If you can pass me a tub I can get done faster." They passed the tub to me and I put all of Alisha's extra Nutren formula cans in the tub.

Alisha was being diverted off to the side because she was in her stroller so they are waiting for me to repack our bags and slip shoes on so that they can check her. I told them that she can walk and just go through but they wouldn't hear it and just smiled at me like they were doing me this huge favor. About this time two security guys come up to "hand check" Alisha's formula and there is a now a female security person with Alisha and Mataya about ten feet away from me.

I'm checking them and still repacking when I hear one of the male security guards say "How can I hand check this? I can't see whats in the can."

I said "My daughter has a feeding tube this is prescription formula and it's way more then your two point whatever ounces that I'm allowed I just wanted you to see what it was and that it's okay."

They say "Well, why can't it be Xrayed?" I say "Xraying is fine. I'm just trying to do what ever it is that you want me to do to get through here faster and it's not working." by this time things are really piling up and one really nice guy from the line comes up and says.. "Here let me help you with your stuff.. or this is really going to be backed up." He started lifting my partially packed bags on to an unused conveyor belt next to us. This simple act of kindness was HUGE to me. I don't believe that there are any little acts of service it's all wonderfully HUGE!! I was then over to see what was going on with the girls in their area of security and all the grumpy people left while we were there so that was good. They waited for me to be there and then they patted her down in her stroller then they patted down the stroller and got a special wipe and wiped it down. I was told that was to see if there were any chemicals on it. We were cleared and on our way to the gate. We couldn't find a place for us to sit by our gate at first so we sat over a few. Then Jeff called to see how we were doing because he kind of lingered to see some of the security stuff and how we were doing. Just hearing his voice was too much at this point and I'm feeling like a total Pansie and can't keep it together. If this were a hospital stay I would be fine I could have a lot of moments alone to collect myself but I still couldn't figure what was wrong with me and why I was having such profound self doubt. Then he said "I love you babe." I just cried some more.. then I told him about security and all that happened then the call failed. I was kind of glad. I love my husband but I was looking for a distraction and to be done with these out of control crazy feelings. Talking to him at the hotel would be fine not nearly as many what if's ahead of me after I'm already there. I was talking with the girls and Jeff called back I started bawling the silent but ugly cry.. I just handed the phone to Mataya.. I hear Mataya say "Yeah, she's crying .... but she's really ok." Later when we were getting in line I thought why cant I just get it together. One thing that I did a lot during hospital stays with Alsiha was to sing church songs that were special to me or brought a special feeling and powerfulness that I could borrow from to get through the next thing. Normally those songs really work for me. I started running through the words and kind of humming to myself "Onward Christian Soldiers" At other times I have felt as if there was an army of angels behind me giving me strength and courage. This time the feelings were so strong the spirit was there I could feel it all around me the feeling was soo good and so intense that I was really bawling. I was trying really hard to calm down. I started to try to conquer some very short term tasks at hand instead. I had the girls and all our stuff (too much stuff fake security in a suit case thinking I packed for all the what if"s) and talked to the lady at the gate and let her know that I had kids so that we could be boarded with the first group of people. She called first class and elite flyers and people who had problems walking.. no mothers with children. There was another mom behind me. She was letting on tons of people and she wouldn't look at me when I was talking to her. They were squished together in line like cattle.. I stepped closer to the podium and said " Hi excuse me.. I have two kids a car seat and bags...." She said "Sorry mame you need to step back for security reasons. I took a step back as I said "I will if you will talk to me from here." She said "We are boarding first class and elite passengers only." I asked some of the men that were about to board if they had first class or elite tickets and they said no. I looked at her and I said I really need to board our seats are on the very last row. The nice guy from security offered to let me go ahead of him but she wouldn't have it. Finally she let me and the mother behind me board it was really hard to not hit anyone with the carseat as we walked through and the people were looking at me but not even leaning away to make it easier..after a few rows I figured well, it's your coma!!!! I was still careful though..

After we were on the plane I find out that the last seats do not get an over head compartment. it's all full of emergency equipment. So my bags were on the opposite side a few rows up. That's where all of our gluten free food etc etc etc was located. I got the girls buckled in and sat down and tried not to cry.. I really was afraid because it just isn't me.. I normally don't just sit and cry and this day I was just about unable to stop. The flight attendant about my age started calling me "sweety" it was so pathetic!!

It wasn't long that we were in the air and I managed most of the time to mellow out... Then they started to feed everybody. first class first and then they came to our row because we ordered special gluten free meal. There were gluten free stickers over all the original labeling. I ate the chicken and cheese sandwich I was so hungry by then. It wasn't long before I wasn't feeling very well at all and I picked off the gluten free sticker and everything in the meal was totally gluten filled. Infact everything had WHOLE WHEAT as the fist ingredient!!!! Thank goodness I'm not a total celiac!! Besides the bread that I thought tasted odd enough to be some random gluten free bread there was a roll and vegan cookie that also had WHOLE WHEAT flour.. Mataya and I had a lot of Sprite and water. Watching "New in Town" was really pretty good and it was fun to watch some reruns of some of my favorite shows including Big Bang Theory. That was really nice and the girls traveled like champs!!

When we landed we walked all the way through a closed airport it was tricky getting the girls on and off the moving sidewalk but they liked the ride. Amazing the little things that are fun when you don't do them often.

The guy that picked us up was really nice!! I was so grateful for him. As soon as I saw him I felt good, normally I'm trying to beat down this creepy feeling. I never had so much as a plumber come to the house when I was a kid because my Dad fixed everything. Strange men are creepy to me most of the time. The driver was so nice and just somebody's husband that I asked for his card so that I could request him if he is working when we on our way home. Juliet director of sales for the Residence Inn Marriott, Jeff spent a lot of time talking with her to get a lot of things set up for us, she recommended this driving company too. She did a wonderful Job!!!! I'm so glad that Jeff did such a great job researching things for us too!! He even found a gluenfree bakery that sells gf cookies and gf cookie dough.. It will be fun to bake cookies with the girls and have some feelings of home while we are away.

We got to the hotel in the wee hours and the girls were really tired.. I brought all the the luggage up on the bellman's cart and I got to bed by around 3:00am.. I was so excited about our room it was so much more then I expected. It feels like a fun apartment and the girls and I will have fun here..

Thanks again everybody for making this possible.

Blogumentary

I wanted to try to make this a blogumentary for all of our family friends and everyone that made this trip possible. I will do all that I can to make this trip successful. I also really want to make this be an awesome resource for all the families who plan to go to St. Joseph's Feeding Center. I do not however plan on sharing a lot of details about how they feed Alisha. This is not DIY and I don't think reading a book about how to swim will do you much good. Every child is unique and has their own mountains to climb and like a lot of things in life you will just have to experience it for your self and I really hope you do and spread the word to as many others that you can while you are at it.

One Last Push We Are Almost There!!!

Hello all!! First, we want to thank once again everyone who has helped, volunteered, donated, bought pizza or mary kay, and came to get their car washed!!!! THANK YOU ALL SOOO MUCH!! We are just 11 days from Alisha's departure date and we are making a last push effort with a 2nd Pizza Fundraiser at Straw Hat at 2929 Matherfield Road. Skip the owner has graciously said he will repeat the same fundraiser as last time. So, anyone who goes into Straw Hat on Monday June 15, 2009 from 11 a.m. to 10 p.m., mentions Alisha's name and orders a regular priced pizza of any size, Skip will donate 50% of that pizza purchase to Alisha's trip. This only applies to pizzas purchased.

Thank you Skip!!!

Thank you again....come enjoy some pizza with us on Monday June 15, 2009. Also you can wish Alisha, Heather and Mataya a successful trip to the St. Joseph's Children's Hospital Center for Pediatric Feeding and Swallowing. Heather will be blogging about their experiences so keep checking back to stay updated with Alisha's progress in New Jersey!!!

Mary Kay Fundraiser Is Still Going!!!

As mentioned in a previous post a friend of ours, Melissa Lilley, is a Mary Kay consultant and she is generously donating 20% of what she earns up and until the first week in June! WOW!! She has so far raised a little over $100 for Alisha's trip to New Jersey. Thank you Melissa. To order through her please go to the following link www.marykay.com/mlilley . Also, free shipping to anywhere in the USA!! Can't beat that! Thanks again to all!!

One Month To Go!!! Thank You To All!!

Well we are down to one month before Alisha heads to New Jersey for her feeding and swallowing therapy. And, we are oh so very close to our goal!! We would like to thank everyone who has donated, volunteered and offered their support through well wishes and prayers!! Thank you so very much!!!

FYI Show KNCI CdLS Awareness May 2009

Tom Mailey Hosts a conversation with Heather Hull, mother of Alisha, and Marie Malloy with the CdLS Foundation. They talk about CdLS and the CdLS Awareness Day May 9, 2009.