31 for 21: Day 31

It is the last day of the challenge and I didn’t want to forget to answer one of the questions asked of me.

A friend had asked if adults with Down syndrome were able to have children.  And the short answer would be yes.  However, adult males with Down syndrome have higher infertility rates than those of adult women with Down syndrome.  There has been one case, in which a male adult with Down syndrome fathered a child who was born without Down syndrome.

Adult women with Down syndrome can become pregnant and carry to term.  About 50% of those births will result in babies being born with Down syndrome.  Some women will also carry babies who are not born with Down syndrome and have no other disability, while other babies will have some other medical related issues.

The fact is, adults with Down syndrome can and will enjoy an active sexual life.  They still need proper sex education and guidance as any other active adult.  Also, adults with Down syndrome can marry and live a very happy life as husband and wife.  Such as Monica and David.

31 for 21: pt. 3

Our last PCS move was from Washington to California.  Honestly, the move was pretty smooth.  The drive down with three kids and one dog went better than expected.

The problem happened right after our pack out as the driver pulled out of our driveway.  I had my master bathroom designated as a no pack zone.  Our luggage and other belongings were in the bathroom.  Sadly, I also left my wedding ring in a closed bag inside a drawer.  This ring was beautiful!  He had it made when he was working in Bahrain.  It was white gold with a very pretty princess cut diamond.  The band for the ring was created just for it also.  Well, as I head up stairs to freshen up for dinner, I opened the drawer and opened the bag and half the ring was missing!  One of the packers took off with the ring…not the band, but the ring that had the princess cut diamond on it!  What made the situation worse was the fact this happened late Friday night.  All I was able to do was call base security and filed a police report. 

When Monday came, I called EVERYONE that was involved with this move.  The moving company wanted no part in the matter.  In fact, it took over a year for us to resolve it in their favor.  According to them, I had no proof it was stolen or that I was probably lying about it.  The military didn’t cover it because they will not cover high value items.  So, by the time I finally decided to claim it on our insurance, they denied it also, because the claim is supposed to be filed within 90 days after the incident…not after a year

So, today, at this very moment I still do not have this ring.  I still have our original wedding ring, but the stolen one was a little bit more special because he designed the ring just for me.

Moral of this story is this:  DO NOT HAVE YOUR MOVERS PICK UP YOUR THINGS ON A FRIDAY!  BECAUSE NOTHING WILL HAPPEN OVER THE WEEKEND…

I can only hope for a very smooth and final PCS move this time around!

Are there any other horror stories out there beside mine???

31 for 21:24 pt.2

You guys just learned about our PCS move to Hawaii.  Now I need to share our PCS move to Italy.

It was decided sometime in 2006 that we were finally getting our chance to go to Italy!  We were so EXCITED!  Because we lived in Hawaii and our things had to be shipped to Italy, our pack out date was at least a month before we left the island.  We also decided to leave base housing and rented a small condo about a block from Waikiki beach...pretty awesome!

Everything was going smoothly until about a week before we were due to leave.  He still had orders for Italy, but this time they changed it so he had to go without his family. Bummer, right?  At this point, I only knew that I had to go to Washington.  I had no idea where in Washington I had to go.  Everything was pretty sketchy.  So, it was decided that the kids and I would stay with my dad in Southern California and then catch up with him in the summer. (a 15 hour nonstop flight with a 21 month old is no fun!  I brought a change of clothes for the kids, but not for me...)

The day before we were suppose to leave was hectic.  Our car was towed because we forgot to move it at a certain time.  We ended up spending the day trying to get our car out so we could put it on the boat going to California.  That same day, he was finalizing our travel arrangements.  We decided to fly back to Florida and say our goodbyes there.  It also gave him the chance to see friends and family again.

We went back and forth over the phone trying to find the ideal flight for our family and dog.  When all was said and done, we spent the night at our friends house and had our final goodbyes.  PAY ATTENTION....a few hours before we said our farewells, we had to take the dog to be boarded first. By this time us moms and girls were crying and hugging and telling each other we would see each other again.  It was very sad to leave great friends, whom I considered family.  My very sad daughter cried all the way to the airport.  When we arrived to the airport, I started to realize that what I thought was our departing time was not the same time on our ticket!  I truly went by the million conversations I had with him about travel arrangements and didn't look at the tickets!  Needless to say, our dog made it to Florida and we didn't.

At this point, we are blaming each other for missing the flight.  What made it worse was the fact we had to call our friends to pick us up at the airport after our very sad goodbyes...the next morning the girls were so confused!  After I took care of things we were finally on our way to Florida...but with a 24 hour lay over in Seattle, WA.  Thank you lord for the USO!

By the time we got to Florida, our dog had already spent 3 days before us!  I'm not sure if I ever want to fly again.  Murphy is not my friend!

31 for 21:20,21,22 & 23 pt.1

Is that cheating?  Making four post into one?  I say not (only because I don't want to be a failure).

This post is mostly going to be Military Life related.  Because it looks like we are uprooting ourselves again and heading all the way back to Kings Bay, GA!  Well, technically, the hubs will be stationed there and we will all live across the border in Jacksonville, FL.

Now, just to recap our history from 2004 until now...just so you can see why this is such a big ordeal or not for me.

July 2004 we leave GA/FL and drive all the way to L.A., California, to ship our car so, we can fly to Hawaii!  The trip was not bad at all...and plus we only had one child at the time.  But, our arrival to the airport was not going as planned and we were running LATE.  We went to the domestic flight service area to get checked in and cleared for security only to find out that we needed to be in the INTERNATIONL flight service area!  WHAT, apparently Hawaii is considered an overseas destination...when I always thought is was part of the United States.  You probably can guess by now that we missed the flight.  It wasn't so easy to catch another flight and it took almost 2 hours to find the right person to help us find a way to get to our destination.  Would  you believe the first person told me it would cost $1200 a person to catch another flight...ummm no, that was not going to happen.  In the last hour before I thought we should just swim over, a very kind man came along and took great care of us.  He rebooked our tickets to leave L.A. the next day to arrive to Hawaii.  Thank you dear sir, wherever you are!

We finally arrive to the most beautiful place on earth.  Get checked into our hotel and start relaxing and having some fun.  Because he took some time off before he checked in, we cruised around the island and took in as much as we could.  Ohhh...how I miss that place. 

The time comes when he checks into his command.  Not one person knew he was suppose to be there.  NO ONE knew why he was there.  So, they stuck him in some class until they could sort things out.  Then, we head to housing to find us a home and people there started flipping out!  See, apparantly you are suppose to check into housing within 3 days of your arrival.  We checked in about 3 weeks into our arrival.  WHY?  Because no one knew we were coming, we didn't get the "housing packet" they said they sent, and there sure wasn't a sponsor or someone to help us sort through this mess. 

WHY?  Because before our move to Hawaii, we were suppose to move to Italy in the Fall.  When he came back from deployment he said we will no longer be going to Italy, and that we will now go to Hawaii.  This was May 24, 2004.  We had to be in Hawaii no later than AUGUST 2004!  As you can imagine, nothing was done according to plan...hence the madness in the housing office.

We get our house, sorry our 1950's townhouse, and a month later we get our furniture.  OK, let's go back to his class and the "new" command.  When his class was finished, they decided to send him to another boat.  A boat that was in the middle of their work up and  in San Diego.  He flew to San Diego to meet the boat.  And would  you know that not one person was there to get him?  Again, because no one knew he was coming!!! Luckily, he's a pretty smart guy and found his way to the boat and got things taken care of.  He arrives home two weeks later and is off again in October (which is when I become pregnant with child#2).  This goes on until his deployment date in February.

31 for 21:19

I know, yesterday's post was shameful!  But, I did it to resond to someone elses post!

You must check out this blog and watch the video.  Dan Drinker posted a video of his elation over the Phillies vs. Giants game.  He is  a Phillies fan and I am a new and proud Giant's fan!  The Giant's lost game 2.  As he is celebrating on the east coast, I am NOT celebrating on the west coast...at a restaraunt...during Bobby's uncle's last night with us! 

But, my lovely Lillian made us so proud when we were at Pier 39 having dinner at a bar/restaraunt watching game 1 of the series.  The Giant's won that night and no matter how much cheering went on, I'm pretty sure Lillian topped everyone with her cheering too.  Yeah, she doesn't know that she was cheering for them, but every guy in black and orange that night just knew she was! 

So, alas, today ended Game 3 of the Series and guess what Mr. Drinker, us Giant's are ahead and my dear husband was at the game to see it in action!  I love to love you, but I'm too happy that the Giant's are up one on  you guys!  Can't wait to see game 4...who will come out ahead????

31 for 21:18

Go GIANTS!

31 for 21:17 The Walk Day

Hi Everyone!  It’s been a really long day, so this is going to be really short.

I can’t thank everyone enough for the support we have received today for the Step Up for Down Syndrome Walk today.  Our friends and family who came and walked for Team Lillian made me feel so proud…proud to have such wonderful people in our lives.  I am so proud knowing that perfect strangers donated their money to help raise awareness for a better and brighter future for Lillian!  It as also fun to see familiar faces, like Ms. Gabby, Ms. Playette, Sofia and Joaquin, Sheridan, Gracie, The Fischer Family, The Slapes, and families from my local D.S. group! OH…I’m sure I’m missing someone!

Last year was our first walk, and I hope to continue for many more walks. 

Today was truly an amazing day and I couldn’t have asked for anything better (ok…maybe a little less rain)!

xoxoxoxo many times over!

Sonia

 

 

31 for 21:16

Tomorrow is our Step Up for Down Syndrome Walk in Sacramento!  I want to take this time to THANK everyone who is walking on Lillian’s Team and for those who have donated (there is still time to make a small donation!)  I am so happy to share that I have reached and surpassed my goal!  My friends and family members are true heroes to me and I’m so glad they are willing to stand up and give back to a life that is so very precious to me!

I am so happy to have such great friends and family supporting Down syndrome Awareness … and supporting Lillian. 

All over the United States and the all over the world, people are walking to spread the news about Down Syndrome.  They are sharing their life stories and building a strong network of supporters, people who will offer friendship, guidance and care. 

I can’t thank you all enough!

Sincerely…with tons of LOVE!

Sonia

31 for 21:15

 

How sweet is your love?

In honor of Breast Cancer Awareness.

31 for 21:14

Today I am SOOOOO tired! 

Back in July I opened up a home daycare.  I really wanted to bring in some extra income, couldn’t get a job as a teacher (stupid cutbacks) and really didn’t want to put my two younger kids in daycare anyway.  So, I was left with home daycare.

I can honestly say I like doing it.  What I don’t like is all the paperwork and inspections that come along with it.  Ughhhh….So many inspections on a monthly basis.  I started out with an infant, a 3 year old and 4 four year old.  Currently, I have the infant and 3 year old, another 3 year old and a 12 year old.  Yes, I have a 12 year old!  I only have him in the mornings, his parents drop him off here so he is not home alone in the mornings. 

Needless to say, my day starts at 530 a.m. and the last kid leaves at 5 p.m. daily!  Even with the kids gone, my day isn’t over.  Paperwork can really get annoying and the clean up from having so many kids is very daunting.

OK…so what I’m trying to get at is Lillian is learning a lot by having other children around.  She is pretend playing and doing all the sing along games.  She loves to play ring-around-the-rosie.  She also thinks the infant is her baby doll, so there is A LOT of supervision in that area!  She will sit when the other kids are sitting during story time.  However, she does not show much interest in coloring.  She is also learning to pass me her plate when she is done eating, because she use to throw the plate on the floor!

ON the bad side, she is hitting a lot more.  She learned this behavior from a previous kid I had.  I used to put her in time out, but then she would hit someone and go and put herself in timeout.  Now we say and sign gentle and sorry and she spends time out in a porta crib.  She also thinks if she keeps saying gentle while in the crib, she will be able to get out.  Not happening… I tried letting her take naps on the floor mats with the other kids, but that soon came to an end.  Nap time was no fun for me and the other kids when she would continuously get up and run off or throw things at the other kids.  So, she is sleeping in her porta crib until she can stay put on the mat.

But my favorite part of the day is when they are all doing this….

 

Oh so sweet.

31 for 21:12

First, I would like to Thank Ms. Sally from Swiss Family Carter for her sweet comment of my Lillian and for asking me some questions!  But, she is also another mother in this fantastic club that I belong to AND she happens to live in Switzerland!
She asked some very good questions:

• What sort of therapies do you receive for Lillian right now?  Right now, Lillian is receiving Physical Therapy, Occupational Therapy, Developmental Therapy and Speech Therapy (however we are taking a hiatus on Speech). All within the week for an hour each.  I believe, this is pretty typical throughout the United States.  Every state and county here will offer something or will try to find you the resources for your child.  Now, I could be wrong, but we received very good services when we lived in Washington and now here in Northern California.
• Are you happy with what you get?  I am happy.  She has a great group of people working with her and caring for her.  They are patient and stern when needed (she’s becoming very cheeky).  They also provide me with a lot of support and information.  Not only do they help Lillian, they are very good at listening to my concerns.
• Have you ever been to Europe?  YES YES YES!!! I am a certified genuine 100% Air Force Brat!  My father served in the U.S. Air Force for 24 years and 22 of them were served overseas.  I lived in Spain, England, Japan and Korea.  I’ve traveled to Germany, Scotland, Wales, Holland, Italy and did a drive by through Luxemburg.  Now that I’m a Navy Wife, I spent a short amount of time in Italy when my husband was stationed there for a year.
• Ever likely to visit?  I think I answered that question above.  However, I know I’m going to go back one day…because I love Europe!  However, when I do go back, you will most likely be in Australia by then…so maybe we’ll have to take a vacation down under???

So, Ms. Sally, How about you answer these same questions???  I would love to know more about the services you Ms. J is receiving and I want to know if you have been to the U.S.  And will you make a visit any time soon???  In fact, if you are from another state or another country, please answer these questions!  I would love to know more and see how much different or same our services are.
And for the rest of you…I’m still open for some questions.  Email me if you like or just post a comment here!  Don’t be shy…

There’s no better cure for sadness than laughter…so Lillian says Laugh Laugh and Laugh.

At least once everyday!

 

31 for 21:11

Do you have any questions?

About me?

The family or my pets? 

Questions about Down syndrome? 

Ask them…I probably would have the answers!

 

AND, the Step Up for Down Syndrome Walk is right around the corner! It should be a fun filled event and I can’t wait to see all our buddies from the area!  And I’m feeling good that we are almost at our goal…hopefully, it won’t be much longer!

!Ciao friends!  See ya soon…

31 for 21:10

So, tonight is another picture night.  I’m in the mood for pictures.  But I have to explain that I’m not the studio loving type.  I like realistic, up close and in your face, having fun with color type of pictures. I’m not a photographer, but I wish I was.  But I’ll share some of my favorites.

AND…to make this post a real 31 for 21 post I’m gonna throw in some Down syndrome Facts.

Down syndrome shows no favoritism.  Whether you are a blue collar or white collar family. Black family. Asian family. White family.  Latino family.  Middle Eastern family…the list goes on.  Down syndrome can present itself to every type of family out there.  Even the mixed up families, like ours.

So, here’s to my own personal lovelies.

us

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BUT, if you really want to see some fantastic photos, go visit Erin’s photo blog.  AMAZING. 

31 for 21:9 (just a pic)

…because the weekends are slow and not many people are reading, I thought I would share just a pic of my baby girl.

Beautiful Girl

31 for 21:7

Did you know that Divorce rates of families with Down Syndrome are lower than the general population and with families raising children with other disabilities?  I think that is pretty amazing!

I believe the study was published in January 2008…a month before Lillian was born.  It is a pretty short and interesting read, you can go to the article and read more if you are interested.  The study also tells us why they think it is, but I’m not too sure if I agree with it 100%, but I still like that there is evidence that our families tend to stick together, better than other families!

Two and half years after Lillian arrived, our family is still together and loving every minute of it!

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31 for 21:6

Day 3 in NICU, she finally became Lillian instead of baby girl Brown!

31 for 21:5

Yesterday, I mentioned about some blog post ideas for this challenge. 

On my way home last night, there was this big black truck right behind me.  Like on my butt behind me!  So, I changed lanes to let him pass.  Here’s the thing, the road we were on has a gazillion stop lights, so I never take off fast and push the gas, because you just won’t make it pass the other light.

So, we both had to stop at the next light and I just knew he was ready to take off and try to pass the next light before it turned red.  The light turned green and there he went and I just took my time…and he was there waiting for me at the next stop light.  This probably happened for the next five miles as it seemed we were heading to the same destination.  No matter how fast he went, I was getting there on my own time.  And I knew he was still going to be there.

This whole scenario kind of played out in my mind about the kids with typical development and the kids with Down syndrome.  The black truck, to me, represented the typical kids.  On the go, pushing hard to get to the next step and going as fast as they can until they have to pass onto the next milestone.  My mini van represented the kids with Down syndrome.  We take our time, but we know we’re eventually going to get there.  And the joy we get knowing that when we got there the other person is still there, waiting for the go.  They go and we catch up.  And the best part is we are all going to the same destination.  The van may have more stops, but eventually we will reach our final destination.

I’ll let you decide what that destination can be…I already know what ours is!

31 for 21:4

I don’t talk much about my faith in God, but yes, I am a Christian.  Not to say, that I haven’t had many disagreements with him, but he has always led me out of my darkest hour.  Through him, I see hope.

Anyway…

Tonight, on my way home from bible study, I had a few ideas running through my mind for my blog post tonight…until I heard the lyrics to the song “Lead Me” by Sanctus Real.  Although, I’ve heard this song many times, for some reason, this one particular verse just stood out:

I see their faces, look in their innocent eyes
They're just children from the outside
I'm working hard, I tell myself they'll be fine
They're in independent
But on the inside, I can hear them saying...

Lead me with strong hands
Stand up when I can't
Don't leave me hungry for love
Chasing dreams, but what about us?

Show me you're willing to fight
That I'm still the love of your life
I know we call this our home
But I still feel alone

So Father, give me the strength
To be everything I'm called to be
Father, show me the way
To lead them
Won't You lead me?

I love all three of my children.  And I truly hope that they know how much I love them and that I’m willing to fight.  But when it comes to Lillian, the fight is more fierce.  I need to know that she will have the future that soon she will dream of.  So, yes, I want to lead her with strong hands…but will you?

I want to stand up when she can’t…but will you?

If you actually took the time to read this much of my blog, then I’m hoping that you will be that person to stand up for her and lead her when she needs it.  When her friends need it.  There is only so much a mother can do for a child, but a whole village can do so much more!  And I just know that my faith in God won’t let me down.  I know that he will lead me…like some reason you were led here, to my blog.

31 for 21:3

If you have never met a person with Down syndrome or a family raising a child with Down syndrome, it is understandable that you may be at a lost for words.

So, to clarify some things (the ones that I can think of for now) are:

1. Please please please try not to say that our children are angels and a blessing.  Although, you might be sincere, but truthfully, all my children are angels and blessings.  Having Down syndrome does not make you become soft and gentle, always smiling and giving.  Because if that's the case, then Lillian does not have Down syndrome :)  Her brother and sister can vouche for that!
2. As much as it doesn't make any sense to you, please refer to my child as a child with Down syndrome.  I know that my child has Down syndrome, but she still is a child first (people first language)
3. Does she have a mild case of Down syndrome?  Ummm...well, mild compared to what?  You either have Down syndrome or not.  Whether she could be high functioning or not, Down syndrome does not come in ranges.
4. And never ever say, "I'm sorry".  To me it sounds like you think we are living such a poor and  unhappy life.  But, what I've learned from Lillian is that you choose to make your own happiness, and that I could never be sorry for.

So, really all I'm asking is for you to just be happy for me.  Tell me that my children are all so beautiful, smart and kind.  With that, you can't go wrong. 

My life is so good...I can just chill!

31 for 21:2

When you are told that your beautiful baby has Down syndrome, try to remember that this baby is still a baby.

He or she still is the beautiful baby.

Love them.

Hold them.

Cherish them.