Monday, May 17, 2010

Remembering Matthew

A few weeks I posted about another Trisomy 18 baby, Matthew, his mommy just sent me a video of rememberance so I wanted to share, it is so sweet. 


Tuesday, May 11, 2010

Why today?

I have had a horrid migraine most of the day, but today was the ignition of a few issues perhaps I have not dealt with very well. 

A good friend of mine died tonight of Osteosarcoma.  We have grown apart over the years mainly because I moved away and kids growing up & yadda yadda - but she is someone near and dear to my heart and our daughters are still close friends, so my heart is broken for her family, she is my other Jessica.  Kim was my walking buddy, my friend that would laugh at me and not judge me and looked out for my daughter as if she were hers.  One night ingrained in my memory forever was of our daughters putting on one of many performances.  They were fabulous - I mean they had candles lit, printed out programs for us and I think we even had wine (I am confident we did) and as always, this performance ended with both of them diving into the pool in a ballet kind of way and it was all done to music. Our daughters were planners but they liked (and still do) to have fun, so I was actually paying attention to every detail because each moment was planned and I knew it.  They spent TIME on this performance.  Kim and I sat and we laughed and we enjoyed our daughters, really enjoyed them and appreciated what they did for us.  They did it out of love and I remember that night specifically, because Kim pointed that out to me.  NOT that I did not know this, but Kim always made me laugh and she made me think and she made me slow down to pay attention.  She was one of those brutally honest, but in a good way people.  So tonight it is fitting as I sit and remember her as the funny and honest and kind mother, wife, daughter and friend that she was.  I want to live my life with few regrets and would love to die having people remember me the way I remember Kim. 

I do hope she is holding Michael tonight as the thought of her holding my son fills me with joy.  Please keep her family in your thoughts and prayers ~ she was too young to be taken from her family.  I do not want to post pictures I don't have permission to post, but this is Kim's puppy and if you knew Kim, you would know how fitting this picture is.  You will be missed...

Monday, May 10, 2010

Happy Mothers Day!

and it was...  I know I post less frequently as I do have a new blog I am posting on fairly regularly, but it is not so personal.  It is "Little Things Along the Emerald Coast" and I am doing this primarily to capture my family and how pretty it is where we live, so if you are still reading and you get a moment please pop over there and I would love it if you would follow because I am fairly sure my husband thinks I have  lost my mind...  Sometimes he is occasionally right, but it is fun anyways. 

Now out of my three girls obviously the oldest, is in graduate school and understands more than anyone and the 2 younger ones though, it is still painful, but they talk with me and Morgan my youngest (that is still kind of strange - because I feel like Michael is the youngest, but you get the point) always says Michael sends her signs and they are in the form of a heart (because he had a problem with his heart).  I think this is very sweet.  Last night at dinner, she found a heart : ), she finds heart shaped rocks ALL the time and leaves, you name it.  I have to say, she is either more observant or right, but regardless I love that she feels this connection.

This was her strawberry at dinner.

A leaf she found in the rain forest in Peurto Rico...

Another leaf she found...

Now I can not get Morgan's personality across very well, but she is extremely persistent and these are just three photos - IF I had my camera with me on many other heart conquests I could literally fill this page up, I love it.  I also got a lot of pots full of forget me nots, many hearts and one with M for Michael all over it and they took me fishing which was so pretty.  I will post pictures of that on my other blog : )

On a sad note another baby has been lost to Trisomy 18.  Morgan brought me home a hand written story I will attempt to tell.  This little guys name was Joshua and Joshua's sister is in Morgans classroom.  Same teacher, so sad and bizarre.  2 - Trisomy 18 babies lost to two little girls baby brothers in the same year, same class and same teacher.  Most Trisomy 18 babies are girls so it is even more coincidental.

Here it goes ~ I am spelling the way she does as well :

5-4-10
Dear mommy,
Today Bethany came back with pictures of her brother his name Joshua.  She showed them Mrs. Carroll, I asked if I could see them she said yes.  I said that looks like my brother.  Mrs. Carroll asked if I got to hold Micheal like Bethany held her brother. I said yes, Mrs. Carroll said that's a special moment.  Then we went back to our seats.  Sense she sits close to me I asked her if she knew what the disease was called? She said full trisomy 18.  I said thats exactly what my little brother had.  She asked what his name was?  I said Micheal.  Then I asked what her brothers name was she said Joshua.  She also said her mom is still sad.  She also said they got model magic and ink to make footprints and handprints Model magic to make foot presses. Ink to make prints.  She also had an ornament.  I asked if she got it from string of pearls she said no she got it from the store. the end.

5-4-10 (I found this in her back pack)
Today is a very good day.  Even though I heard about Bethany Cause I know I'm not the only one who had it happen to there little brother at least not the only one I know.  I also finished an art project in art class. We had sloppy joes at lunch they were yummy.  Are you glad you got to hear about the booms on the radio this morning. Did you have a good lunch with meme? Did you see the booms yet? the end

Apparently she has a lot going on in her little head - trisomy 18, the oil spill and sloppy joes : ) I love my children.  Please pray for Joshua and his family, it is so hard those first few months especially.


Monday, May 3, 2010

Gulf Coast Oil spill

Well, I am somewhat speechless as I think about what is brewing out in our most beautiful waters along the gulf coast.  I took the girls out and to be honest it was not a pretty day, but I am worried, worried it may be a long time before they can enjoy the afternoon at the beach  : (
Don't worry, this guy was safely released : ) but, the magnitude of what is happening out in the gulf concerns everyone ~ we are so dependent on the water, our town is dependent on tourism and fishing.  Hurricanes we can brace for and rebuild, but this, this is worse.  Our animals won't know to leave, the birds, the fish, the sea mammals it effects everything and everyone.  We are as prepared as we can be.  We have our gloves and boots and we have signed up to "volunteer" but now, now we sit, we wait, we watch and we pray... 

Pelicans ~ the pelicans...  they are not the best hunters.  We have a lot of pelicans and they love to hang out on the docks, they are characters.  We have Brown Pelicans and you can tell the babies because they have what we call underpants (white under bellies) and we have quite a few babies right now so I worry.  I worry about the families, the dolphins, the fish, the crabs, the plankton, the turtles, the sharks, the boats, the beaches, well... everything because it is so far reaching and the ripple effect is so frightening.  If we are spared, and I of course hope we are, it is still going to devastate our fragile eco-system (it already has and is) and it is already touching families and wildlife along the Louisiana coast. 

On a happy note, my Stephanie made it through surgery and all went well, but she still needs prayers as she heals and worries with me because I know her and that is what she does.