Our Vacation: Part II

 



Marco enjoyed going on small hikes.  Can't wait until Annelies hikes with us, it is the best way to see nature!






The following pics were taken from "Going to the Sun" road.  They do not do the beauty justice...

 

 

We found some horses in the grass near our camp...






Glacier National Park- Southern edge of the park.  We were not even IN the park yet, and it was beautiful!



Marco made friends at the camping lodge...



Our little traveller :)





Take this, big ball of twine!!!!








Loved this!

 

Oct 16th: Monica and David...Saw it, Processing it, Some Thoughts

Like most parents of kid's who have that extra chromosome, I have been awaiting the release of the film "Monica and David" for about a year now. Trailers I saw until now seemed very hopeful, it was about a couple who have Down syndrome who fell in love at one of their classes (Life skills or something like that), and were married. It follows them for the first year of their marriage. Here are some thoughts. Random, as I am still (like most, I am sure) processing like crazy in my mind...

• Monica is about my age, my generation. When she was born, the general advise was for parents to give up their children who had Ds. Her Mom did not, decided to raise her and ended up doing so on her own. Marriage broke up. Same for David's Mom, but I have a feeling David is a little bit younger than Monica. This is positive to me. Here is where these Moms were pioneers for their children. These are the Mom's who started and continued the movement, and I am grateful to them for that. When Monica went to school, I am sure there was NO inclusion to speak of. Imagine what she could have learned if there was? She most certainly did not come across dumb, I actually was amazed at how smart and poised she is. She is just naive (and I do not mean this in a bad way, it was just thst she was not exposed to things!!!)
• Monica's Mom said that because Monica did not go to College and does not have a car, they were able to afford a large wedding. I like that they did this, they gave Monica and David a wonderful day in the sun. It was a gorgeous wedding, I hope to be able to provide my kids that one day*, too.
• I am NOT going to give up hope for Annelies to go to College. I think where it comes to Down syndrome and other special needs, there is a huge collecive changing-of-the minds that takes place over a long period of time. Where 50-40 years ago parents finally believed (and fought for the belief) that their kids could live at home with them, 30-25 years ago parents started fighting and are making headway to full inclusion in schools. Technically, "Full Inclusion" is now a reality not only in the US but also in other (Western) countries). But it is not the same from one place to the next. We are lucky (or were we smart? I still think back how funny it was that we both wanted to live in Loomis because of its school district at a time we did not even want kids, and thought we would never have any. Funny!!!) to be living in an AWESOME school district.
• Monica's and David's Moms addressed a HUGE paradox, and I admire them for it. They both said they feel an absolute need to protect their children from the outside world. It was plainly evident that David would be totally up for working at Publix, the local supermarket. His Mom does not want him to, and he pretty much surrendered to her desire. When the time comes, I hope to be strong enough to allow my kid to do what she feels she needs to do. Both Aaron and I had jobs as young teens, and I would love it if my kids do something similar. We both had the drive to be independent, and I want to instill this need in the kids. Yes, we will ALWAYS be there for them, like my parents are there for me right now! Bot by god, I will do what it takes to give my kids the tools they need to make the most of their lives, 'special need' or not.
• There is NO DOUBT there will be bullying. And it will SUCK. And I will want to stand up to the bullies to protect my kids but I won't be able to (without subjecting my kid to more of it). I was bullied when I was younger to. I read statistics that nearly EVERYBODY gets bullied at some point in time. It appears to be a part of life, and I will NOT be able to protect my kids from it. What I can do, as a parent, is help instill a healthy sense of self, a good feeling of confidence that hopefully allows my kids not to take those things said by bullies to heart. That will allow them to value their real friendships. Monica's mom gave a HUGE message for us parents of young ones out there, and I paraphrase: We, the parents of our kids, are the ones who TEND TO HOLD THEM BACK THE MOST because we think we are protecting them. Very profound. (I know kids that did NOT have special needs that were protected by their parents so much to the point there is no way they could buid an independent life. It happens, not only to those in the sn community...) I applaud this lady for being able to step back and take an objective view. She is a link in the chain to progress for our kids, and we are the ones who have to continue building that chain, and breaking down the "world's" expectations.
• So yes, I was dissappointed in parts of the movie, but I have to keep in mind the genertional differences. This made me see the positives. We are all here to learn. I like to believe that we all learn from the generations before us, and the generations after us will learn from us. That was what I took away from it...

HUGS!

Debbie

Our Vacation, Part 1

Here are some pictures from the trip we took in September. This part covers Idaho and Yellowstone. Enjoy!!!

OK! Ready to hit the Open Road!!! There was NO ROOM for anything else in my car. Probably a good thing it broke down when it did, the rental car was pure luxury!Coffee break somewhere (I think it was Battle Mntn) in Nevada.

Little Hiking guy...

Shoshone Falls, Idaho (I am amazed at how beautiful Idaho is!)

Marco was impressed at Shoshone Falls, too.

Little guy hanging out at the campground (before the snow.)

We HAD to go see Old Faithful!

SNOW In September! How awesome! (Not so awesome when you wake up in a tent though...)

Wading elk, we saw so many animals in both parks!

Mama and Papa

Oct 6. 2010: Will You Step Up with Us?

Dear All,

The day Annelies was born one of the nurses on my floor made a connection between me and a Mom in the room next to me. Kathy’s 3½ year old son, David, has Down syndrome. She and her family had traveled the road we were about to embark on, and was able to tell me (along with many other things) that “IT WAS GOING TO BE ALL RIGHT”. She was there for me when I needed to ask questions as I came to terms with the diagnosis in the weeks after.
One of the Down syndrome Information Alliance’s main objectives is to ensure information is delivered to the right persons at the right time in the right place. DSIA organizes community outreach events which allow families living with Down syndrome to connect with each other. During these events, local siblings of kids with Ds meet each other in smaller groups and provide each other support. Parents meet in smaller groups (based on their children’s ages) and are given information and encouraged to share information about education, therapy, and other important issues. Educational events are organized where key-note speakers come and share pertinent information with parents about development, different therapies and research results.
One of the main objectives (my favorite one) of DSIA is to do what Kathy did for me that day; be there for new parents to answer questions and give support where and when needed. It would be wonderful if every family with a child who has a Ds diagnosis had the opportunity, when ready, to meet one of the parents who has been down this road to ask questions, someone who can be believed without a doubt when they say: “I have been in your shoes.” DSIA is working on implementing a plan that will allow for such connections.
The face of Ds has evolved (matured, in my opinion) over the past 50 or so years. With each generation, parents and teachers discover that Ds is not the main ‘thing’ about a person. Persons who have Ds are more like others than not, and also very different from one another. More and more, people who have Ds are actively involved in society; attending mainstream schools and figuring out what they enjoy doing, pursuing careers and eventually living independent lives, getting married and starting families of their own. DSIA is here to ensure parents and families are given information they so desperately need, hope at a time there seems to be none, examples and inspiration.
“SUDS” (Step Up for Down syndrome) is an annual fundraiser that enables DSIA to gather funds so they can continue services within our community. We would be honored if you would like to join our team at SUDS on October 17th at 10:00 am. We also know that time is limited for many of you, or you are not in our area, so there is the opportunity to donate to Annelies’ fundraising effort for DSIA. There is absolutely no pressure, I am not crazy about asking for money and only do so when the cause is important to me and those around me. I thank you from the bottom of my heart for reading this far if you have, donation or not.

Please use this Link to support Annelies’ fund raising efforts.

Please use this Link to join our team.

Warm Regards,
Debbie and Annelies Fisher

Sept 21, 2010: A Short Story

I wrote a very short story, imagining myself at a future event in Annelies's life. I am well aware that her life will probably not go the way I imagined in the story, and I most certainly make it a point to live in the present with both of the kids and not even worry about the future. But many hopeful articles, pictures, stories and video's as well as the awesome progress Annelies keeps making has allowed me to fantasize a little bit about the future. Who does not have dreams for their kids' futures? All that said, I will allow my kids to develop their own interested and not push them into the things I (or my Husband) likes and keep them away from the things we may not care for. Here is the story...hope you enjoy...

...As I sit here waiting for the music to begin, I marvel at the fact that out of all the things I dared hope for my daughter in the past 23 years, this was the biggest. This is the event I hoped for but did not want to hope for so much that I might be disappointed. This is the event I wrote off on the day she was born. One of many, come to think about it. This event is one additional step she has taken to become a person as involved, as part of society as anyone could ever be. This event is 20 years in the making.
On the day Annelies was born, I thought I knew a lot of things. I thought I knew she was not going to be going to normal schools, let alone College. Ruefully I mentioned to one of the NICU nurses that I would not have to put money away for College for this child. (I have a kind of sarcastic, dark sense of humor). I thought I knew she might even be oblivious, that for sure I would not have any kind of ‘normal’ human contact with her. I thought she would be forever a child, which could be cute when she WAS one, but not very cute as she progressed through her teens into adulthood. On the day she was born I thought my life as I knew it was over.
The first 12 hours of her life, I was not really mentally there. I was dealing with what I thought was some kind of punishment, karma. What had I done to deserve this? Now, 23 years later, that day is a fog, I do not remember much about it at all. One thing I remember. Around 3 am that night, I went down to the NICU. I asked to hold Annelies. The NICU nurse could hardly contain her excitement; here was a mommy ready to bond with her baby. I held Annelies and rocked in the oversize rocking chair next to her crib (I still remember how comfortable those chairs were, you could just kind of sink into them, something my sleep-deprived body was grateful for). Many thoughts went through my head; I cannot tell you what they were. Suddenly, Annelies opens her eyes and stared into mine. It occurred to me at that moment that I was staring in the eyes of a person much, much wiser than myself. I got a message; I don’t know from whom, maybe it was Annelies herself? Maybe god? The message is this: “Everything Will Be OK. Trust Me”. The moment lasted seconds but will be etched in my mind forever. Its profundity still makes the hairs on the back of my neck rise when I think about it.
Throughout the years, Annelies has grown up to be a person with a strong sense of who she is. A big part of who she is, is fiercely independent. It was evident to us even when she was little; always exploring and chatting to herself and her environment, always testing things and bossing her dolls around. She would get irritated if something did not work her way, but would always insist on trying it. On the other hand, if therapists or other family members engaged Annelies when she was not ready for it, she would let it be obviously known. School opened up a world for her, she loved being in her classes. She loved the social aspect of school and was (still is) part of a wonderful circle of friends both typical and with Ds. Her natural curiosity gave her the impetus to put that extra effort she needed to put into most of her class work, getting very decent grades and being able to be mainstreamed with her peers in most classes. Like her Mommy, she did not ‘get’ and was not good at, math. So we got extra help for her (her Brother was a great help with this) and she was able to ‘survive’ this hurdle. She actually ended up doing better than I ever was at it!
One place Annelies was able to be without any prejudice (at least before people knew of her) was at horse shows. Like her Mom, Annelies was born with a “horse gene”; she loved horses from the very beginning. One of her first adamant demands was that she be put on a horse, and I had to let go of all my good intentions to not let either of my kids ride until they were at least 8 years old (it is a good idea for kids to have the ability to empathize since they are working with a living being after all, and I advocate the good treatment of the horse to be a priority.) Annelies wanted to be on a horse (she had seen me ride) and once she had her first taste of riding, she did not want to stop. We found her a pony, nicely trained. The pony was nice and stout so Mom could get on and fine-tune her from time to time. Annelies learned to ride and take care of the pony at the same speed any child with interest in horses would have. She took her first lessons with my trainer. When Annelies was on a horse, with her helmet on, no one saw Down syndrome. They saw a young girl who displayed a fabulous partnership with her horse, garnering a number of successes at local shows. Yeah, you should have seen the judge’s faces as they saw her without a helmet, hanging around the show grounds. She received many compliments, and had a lot of ‘fans’ (the biggest being her 2 sets of Grand parents, on both sides of the ocean.)
When Annelies was 3, we started play dates with a local mom and her son. Annelies and this boy developed a deep friendship; they were crazy about each other from the beginning. Even though he did not attend the same schools, this friendship lasted and blossomed into a romance when they reached their teen-years. Annelies always had a date for her dances at school which I loved…I never went to any of them.
The music begins to play. I glance at my family, friends and my ‘Sisters’, the ones who have been here for me my family through the years. My Husband and I squeeze each others hands in part nervousness, anticipation, excitement and a little bit of melancholy. Today, our little girl flies the coop. I look at Annelies’ husband to be, and then focus on the back of the aisle. There comes my Daughter, ready for a new chapter in her life.

Sept 7th, 2010: Road Trip with a Delay

Yesterday was the big day! We were so excited to embark on our first big Road Trip with Marco! Annelies is at Grandma's house, we decided it would be a bit too much for her. In light of all that happened last year we also decided that it would be great for Marco to have a little alone time with us. So we hit toe open road! And then...the car started doing weird things. It felt like a fuel filter problem first, but then it became quickly evident that it was the transmission. By this time we made it to Reno, and I am GLAD that was where we were. Pulled over into a parking lot and called AAA. Tow truck guy came out and towed us to a transmission shop, which was closed due to the Holiday of course. So the tow truck guy (really nice guy!!!) took Aaron to Hertz to rent a car and Marco and I checked into the hotel next door to the transmission shop (how convenient!). Aaron rented a cool mini van, transferred all our stuff from the car into it (a lot of room!!!) and we went to early dinner after that. Tomorrow morning (oh, guess that will be this morning) we will check the car in with the transmission shop and go on our merry way. On the way back we will pick up my car (we were going to pass through Reno anyway, so it is not a detour. Just a small detour in our finances but these things happen!)
We are going to Yellowstone and Glacier National Park. Marco and I can not sleep (probably from all the excitement today) so we are in the hotel computer room, there are 2 computers. Marco is watching Blue Men Group on the other computer. It is teh only thing he will watch on a screen (he does not watch TV-not interested). He always asks for Blue Men Group when he sees a monitor. I do miss my little girl, but am focusing on having a good trip and seeing some beautiful sights neither Aaron or I (or Marco of course) have seen yet.

Sept 3, 2010: Big Boy Bed and Surgery for Marco

The other day, Aaron asked me if I thought it might be a good idea to remove one of the rails from Marco's crib. I told him to go for it, so he did. Marco had an absolute blast that first night. He was sooooo excited, that he could not go to sleep. It was SUCH a big change for him. That first night, he only came out of his room ONCE! We were really surprised and happy! Next morning, boy, was he ever tired. I figured for sure he would sleep well the next night. Wrong!!! The next night, Marco came out of his room, oh, about a million times. We lost count as well as our patience at the end (just a little...). But we hung in there, and eventually Marco went to sleep. That was the end of it, he now sleeps in his Big Boy Bed all by himself, he handles his new freedom like a champ, only comes out once in a while. On weekends, he does get up first and insists in opening all our doors and turning on all the lights just to make sure we are all up. So cute! I love that we took this big step to independence for Marco, and he did too! Soon, we will go shopping for a twin size bed for him with a good mattress (those crib mattresses have no support whatsoever).
Marco has been diagnosed with an inguinal hernia, and needs surgery. Luckily, it is a routine surgery, so nothing to worry about. Personally I have never had major surgery and it is weird to me that I have to send my 3 1/2 year old to the Hospital for one! (Part of me thinks: My gosh, these kids have been through so much already, is this really neccesary??) But it is, and in the grand sceme of things, this is relatively minor.
Marco and I met the Urologist who will perform the surgery, and I immediately liked him. Marco warmed up to him also, which is a small miracle for my very suspicious child (especially in an exam room, he is NOT a fan of exam rooms.) Marco will have his surgery at the end of October, and it will be out-patient, which means we can take him home soon afterwards, he can recover at home and will probably do so within days. I have several friends whose children had surgery lately (Major surgeries, nothing like this) and the kiddo's recovered like champs.
Probably to me, the scariest thing about surgery is the aneastetic. People have different reactions to them. But we already crossed that bridge last week when Marco had an MRI (on his brain) done as part of a study at UCD MIND institute. He went through that very well, just groggy for most of the day. Glad we had that experience, so now we know what to expect.