Gracie Goodlebug

God Greatest Gifts... often unrecognized in this cruel, selfish, human world.

2010-04-18T05:58:00.000-07:00

"I know what you are thinking. You need a sign. What better one could I give but to make this little one whole and new? I could do it; but I will not. I am the Lord and not a conjurer. I gave this mite a gift I denied to all of you--eternal innocence. To you she looks imperfect--but to me she is flawless, like the bud that dies unopened or the fledgling that falls from the nest to be devoured by ants. She will never offend me, as all of you have done. She will never pervert or destroy the work of my Father's hands. She is necessary to you. She will evoke the kindness that will keep you human. Her infirmity will prompt you to gratitude for your own good fortune... More! She will remind you every day that I am who I am, that my ways are not yours, and that the smallest dust mite whirled in the darkest spaces does not fall out of my hand... I have chosen you. You have not chosen me. This little one is my sign to you. Treasure her!"-- Mr. Atha from Morris West's The Clowns of God

1st BooBoo

2009-12-10T06:57:00.000-08:00

Ouch!!! Today I got my first BooBoo!! It hurt so bad!! I was playing by Mommy's bedroom door. I had this cool RED plastic toy that belongs on the top of the Bubble Train, but Maria took it off the Train and I "found it on the floor" (that choice of words is for you Brookie Doo).

Anyway, I was playing with the toy and my hand and the toy slipped between the space of the bottom of the door and the floor.

My hand was stuck...seriously. Mommy was right there, talking on the phone...as usual... so I started screaming. She jumped up, ran over to me and pulled my hand out.

It hurt so bad. I started arching my back~~code for I want my Baba Milks NOW!!~~ and she grabbed my bottle and we had to wait 90 secs for it to warm up!!

90 seconds is a really long time to wait while one is screaming in pain. Call me spoiled if you must, but I will tell you now, I will NOT have my Babas cold, EVER.

Mommy didnt look at my hand til I had my Beloved Baba Milks in my mouth, but when she did, she saw my third finger was swollen and bleeding a bit. She tried to put a Band Aid on it but I wouldn't let her. I was moving my finger to avoid the Band Aid so she knows its not broken...

I'm going to take a nap now...This tragedy has truly worn me out!!!

Sister Sarah

2009-11-08T07:37:00.001-08:00

I love my Sarah...Since Brookie moved, Sarah has become Mommy's #1 helper. She always plays with me, sings to me, and helps with my bathing and diapering.

She likes to go on FB alot and chat with her friends. She is super popular at school and gets straight A's. I know I can count on her to help me with my homework in the future, so my grades will be as good as hers.

Sarah is the "middle child" just like Mommy. Her personality is just like Mommy too. Thats one of many reasons why I like to be with her.

She is a great Big sister and I just love to be around her whenever I can!!

I can hold my baba milkies!!

2009-11-02T10:19:00.000-08:00

See this pic? This is how I drink my Baba Milkies. I dont see what the problem is. I enjoy maxin' & relaxin' while I have my Babas.

Last week Miss Joannie (my OT) came, as she does every week, and she says she's been noticing that I refuse to hold my Babas. Its not really that I "refuse" I just dont feel like it, ya know?

So, Miss Joannie does her new brushing technique that is supposed to help with people who have Tactile defense. I think that means I dont like to touch certain things. I'll tell you what, I do not like water. I dont like to get in the tub at all. Its not so much the water...like I dont mind sitting in it, but I know it will lead to Mommy washing my hair and I really, really hate that business!!

What was I talking about? Oh yeah...holdin' my Babas. So Joannie does the brushing thing...I was trying to escape, but that Joannie is something...always a step ahead of me, no matter what I try!! Then she kinda sits me up, puts my hands around the bottle and voila...I am holding my bottle!! I continue to do so until I am finished.

Mommy and Joannie made the biggest fuss about the whole thing. Its no big deal. I'll hold it whenever I want, I just dont feel like it most of the time!!

Tomorrow is Tuesday...Tuesday is therapy day...Joannie will be back, with her smiling face...thinking of new and exciting ways to make me reach my full potential...It sure is hard to be a baby!!

Why is Mommy always talking or singing?

2009-10-23T06:53:00.000-07:00

This is Mommy...as you can see, she is talking, rather than smiling for the camera. She is ALWAYS got that yapper yapping.

I do love it because she is usually talking to me, or better yet singing to me. Her favorite song to sing goes like this...

"Maybe Gracie, give me your answer do.

I'm half crazy, all for the love of you!

It wont be a stylish marriage, I cant afford a carriage.

But, you'll look sweet upon the seat of a bicycle built for two!"

She sings this to me a million times a day and I love it. If I am sad or hurt, she scoops me up in her arms, puts her lips to my ear and sings my song. I instantly stop crying. I think she must really love me.

BTW...no H1N1 for me...just conjunctivitis...I HATE eyedrops!!

OMG!! I think I have the swine flu!!

2009-10-22T06:27:00.003-07:00

OOOOOHHHH!!! My eyes are oozing green gook. My nose is crusted over with green cement...Mommy is calling the doctor. I am so crabby. I wouldnt go in the stroller at all yesterday and Daddy had to carry me all through the Mall.

Alex was sick first, then Frankie, Mommy, and now me. I am trying to have fun and smile but I am just too crabby.

Now Mommy will take me to the doc and while she is there, they will take my blood for my thyroid check. Emory wants blood too ~ so they can study MDS... we'll get it all today. I am not in the mood for any of this!! Mommy will need a glass of wine for sure tonight!!

Off to the doc we go!!

Beauty Queen of only 18....

2009-10-07T11:28:00.001-07:00

"There's always been a lot of tension between Lois and me, and it's not so much that I want to kill her, it's just, I want her not to be alive anymore." ~ S. Griffin Brookie's favorite quote. It suits her.

She ADORES me!!! and I, her. She used to see me everyday, but now she lives somewhere else and I only see once in a while. When she does come to see me, she is always with this tall man. I get a little scared at first but he is so nice and laughs alot, so its all good.

To know is to love her. Brookie Doo is full of energy and happiness. She always sings to me and i adore her. She is the leader of things fashionable and stylish, helping Mommy, me and the rest of my siblings look good. She wears bows in her hair just like mine, so I know I look good!! She is also considerate of others. Something not easy to maintain these days. She works all the time at 2 jobs and starts school in January.

One last thing about Brooke, she is always buying me & my sisters shoes. I dont know why, but let's just say I am not going to complain about it.

Time to wrap it up...In true Brookie Doo fashion, I'll sign off with a "SEE YA!"

Happy 1st Birthday Gracie Angel

2009-10-01T08:05:00.000-07:00

Today is my 1st birthday. Mommy is acting so weird today. She keeps singing to me and dancing around. I don't really understand why today is different than yeasterday or tomorrow, but Mommy is definitely acting different. I think I'll let her write something on my blog today....

Amelia Grace, one year ago today, Daddy and I were at the hospital. We were eagerly anticipating a new baby girl. We took all the tests we felt necessary while you were in my tummy and we were expecting a flawless delievery.

All went well. You had 9's for your Apgars and I was relieved. About one minute after you were delivered, Daddy whispered in my ear that you looked like you had Down Syndrome. I told him that all babies look different when they first come out. There is swelling and all kinds of things to make newborns look different. I thought your sister Maria looked like an alien. I did notice the nurses standing around you while you were in the warmer and they were whispering alot. Seemed a strange reaction for the nurses when you were so healthy.

Daddy was persistent and we decided to tell the doctor what we suspected. She said she would pass the info along to your pediatrician who would see you the next morning. We had a wonderful evening with you and I couldn't have been happier.

The next morning the Ped came in. She did a physical exam and told us that you did have several physical traits that are common in Down Syndrome, but not all. She recommended a blood test to tell us for sure.

The next morning she came in very somber and confirmed that you did have a 3rd 21st chromosome. I think she expected us to cry or be upset. We did neither. We asked what we could expect and what we need to do to be the best parents possible for you.

After we came home from the hospital, I received a letter from Emory Hospital stating you had Mosaic Down Syndrome. I had no idea what that meant. Having a "special needs" child was a whole new world to me. The only child I knew that even had D.S. was the Vice Presidential Nominee, Sarah Palin's child, who was a few months older than you.

As I researched your condition and asked many questions, I discovered that 57% of your cells have a 3rd 21st chromosome. The other 43% were normal. No one would tell me what that would mean for you. The "Professionals" said most MDS kids accomplish more than the average child with D.S., but no one can predict your capabilities as no one can predict any child's capabilities.

Well, you have accomplished more than many average kids I know. You have opened my eyes to a world I had never seen before and are an absolute joy in my life. In fact, Everyone who knows you or even meets you falls completely in love with you. I am honored and blessed beyond words to be your mother.

Happy Birthday Darling Angel!!

2009-09-09T05:22:00.000-07:00

Frank and Aurora...they are number 5 and 6 in the sibling line up. Frank will be 8 in November and Aurora is 5. I'm pretty sure that they are crazy about me. They play with me all the time and Frank has even changed my diaper for me.

Aurora and I look so much alike. Everyone says Aurora is Beautiful and reminds them of Kim Kardashian...I'll take it.

Frank is absolutely hilarious. When I hear them playing in the other room, I hear Aurora laughing and laughing. I know Frank is the cause. He also plays tricks on Mommy and is always willing to make a fool of himself to get a laugh. He is also the only one who struggles in school. If I have any difficulties, I will look to him for support and help. I know he will be there for me.

Thats Frank and Aurora. I'll be featuring another sibling soon. Haven't decided who yet. See ya!

Mommy's got OCD!

2009-09-02T11:32:00.000-07:00

I think my mommy has OCD, among other disorders. She wont let me or my sister's leave the house without our hair done including bows and ribbons that match our outfit.

She, herself, is always in Yoga pants and a tank top with her hair in a messy bun...rarely makeup. I dont know why she is so focused on how we look and not herself. I know we mostly go to the YMCA and then the store if we need to. She leaves us at the Y baby center and then comes back all sweaty an hour later. Maybe thats why she doesnt care about her hair.

Nevetheless, she has some serious OCD. She is working on our hair all the time and we are at the Y everyday. I am just so glad that we get to be with her everyday. OCD or not!!

Modeling!!

2009-08-25T09:40:00.000-07:00

Daddy took this shot of me while he was changing my clothes to try on my new outfits he bought me...Mommy saw this pic and went crazy with it. She loves this pic. It shows how happy I am and if I'm happy, then Mommy is happy!! Jealous Brooke?

2009-08-25T09:23:00.000-07:00

Yesterday, I had to go to the Hospital for a sedated ABR hearing test. This test will tell the doctors whether or not I need a hearing aid.

It was really hard for me. Two nurses and Mommy and Daddy had to hold me down while they put in my IV. I was really crying and trying to escape Mommy's arms when they gave me the Sedative, Propafol. Daddy was watching my face and said I was screaming one second and then my eyes rolled back and off to sleep I went.

After the test, Mommy and Daddy came back in the room and the Audiologist told them I passed the test. That means no big bulky hearing aid for me!! They did make a mold for new ear plugs. I need them when I take a bath because of my ear tubes. I am so happy that I passed the test and I know Mommy and Daddy are thrilled.

Saturday before the test, we had a party for Alex and Sarah's birthdays at the pool. It was great fun for all my brothers and sisters and their friends but I fell asleep!!

As a side note...Daddy bought me 3 new outfits on Sunday and I love them!! I am definitely a shop-a-holic!!

Hearing test #2

2009-08-11T05:30:00.000-07:00

So, today Mommy and I are going to the doctor...again. They are giving me another hearing test because I failed the last one, last month. If I fail today's test, I will have to have another test under sedation again.

This would be my fourth time being sedated. I am getting pretty good at it, although it makes Mommy a bit nervous everytime.

I'll get back to my blog later and let you know how it goes. See ya!! (My big sis Brooke always says "See ya". I stole that from her!!

1st Tooth

2009-07-21T18:00:00.000-07:00

My mommy tricked me tonight...She was singing to me and I smiled real big and she saw the secret I've been hiding all week. She suspected it, but tonight she is jumping around all happy because she knows its true....I have my 1st tooth.

I must say I have been a bit on the crabby side this week, which contributed to Mommy's suspicion. Now the secret is out...Go scream it from the rooftops!! I got my first tooth...Now they are gonna be goin' hard at it with that spoon feeding crap. Well I tried...and have to give myself a pat on the back for a week's worth of success!! Cheers!!

2009-07-21T12:07:00.000-07:00

Miss Joannie came over today....She is my therapist. Some days I like her and some days I don't. She makes me work really hard and do things that I am not so comfortable doing.

Today, we worked on crawling and eating from the spoon. Not liking either of those. I have some low muscle tone at my shoulders and hips and it makes crawling not so easy.

The food thing....I dont know... to quote my friend Stewie Griffin, "It wasn't even about the eggs, really. Frankly, I like the yolks. I have no problem. There's always been a lot of tension between Lois and me. And it's not so much that I want to kill her, it's just, I want her not to be alive anymore. I sometimes wonder if all women are this difficult. And then I think to myself, 'My God wouldn't it be marvelous if i turned out to be a homosexual?' " All but the homosexual thing...I dont think about that.

My mommy is having a tough week. She had it hard shopping with me and my sisters yesterday and then today is cleaning the house. She thinks I might be getting a tooth, She tries to stick her finger in my mouth to feel for it, but I always pull away and I will not let her see a thing. I move my tongue in the way if she tries to look.

I gotta go. Its time for my baba milks!!

Hearing Test

2009-07-15T06:43:00.000-07:00

I didnt pass my hearing test yesterday. My mom is pretty bummed. I go back in 4 weeks and if things arent better then I go under sedation again so they can figure out exactly whats going on and fix the problem. Other than that summer has been great.

My song

2009-06-30T13:24:00.000-07:00

Today my mommy picked a song for my blog...her brain was stalled (as usual) so she called Brooke who reminded her of Sweet & Low. First of all its by Augustana, and we are big fans...secondly, Brooke used to sing this to me when I was first born. Mommy added the Lyrics so you can check them out and see this is indeed my song!!
Anywhere you go, anyone you meet,
Remember that your eyes can be your enemies,
I said, well hell is so close And heaven's out of reach
I ain't giving up quite yet,I've got too much to lose
Hold me down, sweet and low, little girl
Hold me down, sweet and low, and I'll carry you home
Hold me down, sweet and low, little girl
Hold me down, and I'll carry you home
Rain is gonna fall, the sun is gonna shine,
The wind is gonna blow, the water's gonna rise
She said, when the day comes, look into my eyes
No one's giving up quite yet, We've got too much to lose
Hold me down, sweet and low, little girl
Hold me down, sweet and low, and I'll carry you home
Hold me down, sweet and low, little girl
Hold me down,And I'll carry you all the way,
You say you're fine But you're still young,
and out of line All I need is to turn around,
To make it last, to make it count
You're gonna make the same mistakes
That put my momma in her grave I don't wanna be alone
Hold me down, sweet and low, little girl
Hold me down, sweet and low, and I'll carry you home
Hold me down, sweet and low, little girlHold me down, and I'll carry you home...

MRI

2009-06-27T14:05:00.000-07:00

Today I went to the hospital for an MRI. I had to be sedated because at not yet 9 months old, I dont understand when people to tell me to lay still. I had an I.V. which didn't feel so great. I cried but not too much. Mommy was there the whole time helping me thru it. Everything went fine and we were able to leave fairly quickly.

Last week I had a small procedure. I had tubes put in my ears. I had to be sedated for that too, but no I.V., just gas. I had a harder time with that actually. I woke up very fussy which is not my norm and they had to give me a dose of Phenobarbatol.

Luckily I am very healthy. Most kids with Down Syndrome have cardio or respiratory problems and I have had none. Mommy and Daddy are very happy about that, and they are thrilled with my gross motor and fine motor progress. I am reaching all my milestones ontime or just a few weeks behind!!

I am chillin' in the swing for now. Just relaxin' which is what I do best. See ya!!