Season's Change

the nights are beginning to get quite chilly here, and the leaves are metamorphosing into liquid golds and candy apple reds. Fall is coming, the season is changing again. Here in Maine, Fall lasts about 2 months, and then Winter comes, and lasts about 5 months. This time of year is usually seen as the end of the cycle, the dying of the buds and blooms, the end. For my family, Fall is a renewal, the fresh crisp air is a harbinger of hope.
September is tough for us, with the loss of our son, which seems to stretch endlessly throughout the month. His leaving, his killing, his removal from the machines that breathed for him but were never really LIFE. I would skip September altogether if it weren't for Jesse's Birthday and the beauty all around me. My picture window looks out across the river, the mountain rises behind me, and the air is clean and tinged with the smell of woodsmoke. I feel alive in ways I do not feel the rest of the year.
And yet, the changing of the seasons this year brings with it a change of seasons for me, personally, as well. There is a sense of loss for a friendship that doesn't seem to be what it was, that has been tainted with pettiness and anger and seems beyond repair. Even though it seems to be nearing the time when the bloom will fall and the wind will blow hard and cold, it is important to me, valuable, it is a part of what has shaped me.
My summer was hot and passionate, my Fall will be cooler and more airy. My friendship has changed, and it will be different forever, now. But I held it in my hands as surely as I did the Lupine that grows wild and free to welcome Spring. Like the Lupine, it is drifting away from me, but the seeds are planted deep, and perhaps time will bring it back to me. It may have crumbled in my hands, but its beauty will always be with me. Maybe I will be surprised again someday, to see it growing strong and flourishing without a touch from me.
Lupine is strong, and I think...thought?...that this friendship was, too. Maybe it is just the changing of the seasons, maybe it is the strength of the winds that bend us that is pushing us apart. One thing I do know, the strongest and most beautiful wither and die with too much toil. And I have a knack for pushing too hard. I will leave it be and see if it grows back of its own will. The season is changing, and I am changing, too.

100% guarantee...you WILL laugh

We have made a discovery!

we have made a new and important discovery!! Bras are not comfortable!! They are really cute to look at, and fun to try on, but oh so not fun to wear, especially when they MUST be put on by oneself, and get all tangly. The answer, we discovered yesterday, thanks to an angel at Gap Kids, is a CAMI bra! Like a t-shirt with a built in bra section. All cotton. No tags! Smooth not "bumpy". Not itchy!! Yay. Life is good.

http://www.gap.com/Asset_Archive/GPWeb/Assets/Product/515/515493/big/gp515493-00vliv01.jpg

this is SO my mother...ok, its ME too ;)

sometimes I think everyone thinks I have it all together

And Im not supposed to have bad days or bad feelings, Im just supposed to keep on being all rosey and happy. But somedays I dont feel that way, and sometimes I need to be the one needing a shoulder. I think I have always handled everything, and people see me as strong or capable. maybe a little nutty, too, but strong and tough regardless.
Today I dont feel tough. I feel exhausted. I feel like I am teetering on the edge of exhaustion. Trying to help my dad out, and buy his house and land so the tax man cant get it. :( Trying to help him get into Senior Citizen housing...."but please hon, dont call it THAT." I am facing the future with this man who is still in many ways a stranger to me. And yet, he IS my dad. Whatever obligations he failed to live up to for me as I grew up dont matter now. I feel my obligation to him keenly. My mother despises him, and I made the mistake of discussing his situation with her very briefly, in an email. It opens the door to so many emotions, so much bitterness. I think that I have forgiven them both, but I doubt I will ever see the day either of them forgives and moves on. It is tiresome being in the middle, and Im almost 40, so it sucks out loud to feel 6 again, arms thrown wide, standing between them...hollering stop.
I am up to my eyeballs planning a birthday party fit for an almost 12 year old boy, to boot. Jesse, my darling son, is one year away from being a teenager. His voice alreadys breaks when he talks, and he is almost taller than me now. I mourn the little boy he was, and am excited about the man he is becoming. But it is a big job, doing this right. 8 little boys...it should be a blast, actually, if I can pull it off.
Just because Im a glutton for punishment, I planned Ciarra's "I did 15 days of school without whining" party at the bowling alley for tomorrow night right after school. 4 of her friends, bowling and pizza. I love that the kids want to come, and I wish I had a van. LOL. We will hurry home to be there for the above mentioned 8 boys arriving for a sleepover. It is going to be a busy weekend.
Found out Ciarra's ears are worse than before today. She has perforations on both sides, and pretty poor hearing. We will need the FM system at school, and possibly hearing aides. She just got glasses! I do know this is tiny in the scheme of things, and she is SO blessed in life. But it sucks, nonetheless. Dare I say that out loud?
Anyway, life is good, full, and fine. But it throws a few curveballs sometimes, to keep me on my toes. Oh well, everyone is healthy and relatively happy.

Meet Kaia

Could you remember all of these signs? Not me. This little sweetie pie has an incredible signing vocabulary, not to mention she is cute as a button!! Thanks, Lacia, for letting me show her off. She is AMAZING!

Make an on-line slide show at www.OneTrueMedia.com

Wrapped Emotions-The Blink of an Eye

I am participating in a photo/writing event called Wrapped Emotions, in which we take a photograph of something and, as the blog author suggests:

...step forth into the world. A public place, not your living room or Aunt Bessie's kitchen. Find an object or objects that you have seen before...by objects I mean anything from buildings to poles to poodles to garbage trucks, anything. Lie on your back on the ground or floor and snap at least one photo from that vantage point. Relax. Hold on to the emotions running rampant through your body as you do this and use them in finalizing your creation.

Post the photo on your blog along with your thoughts...remember the emotions you felt as you snapped the photo...and anything that happened while getting your shot. Talk about the experience. Set the scene. Write a post that let's you relive your emotions and insight from the new vantage point. Have you taken anything away from the experience that might help you approach your life from a new vantage point? What do you have to say?

Take a deep breath, letting the oxygen fuel your creative, daring spirit and go snap that photo.

I just found this blog, and have not yet had time to go OUT and do my thing, but the suggestions about what to photograph made me think about a picture I took about 2 years ago that has captured the essence of my life. Not my OLD life, when I was just Michelle, a mom determined to raise her kids well. But my NEW life, the life that I was given when I had my daughter Ciarra, who has Down syndrome. The life that changed forever in the blink of an eye. Or the shape...of an eye.



It was a quiet late summer afternoon, and Ciarra was 7. She had a terrible fear of bugs, and a brave little spirit that wanted to overcome it. And so, at my direction, she came to the window to look at a tiny ladybug climbing up up up the glass. If you have children, you have had those moments, when the sheer delicate beauty of your child grabs your heart full throttle and leaves you breathless. This was one of those moments. She was afraid, and yet she was open. SHe was being brave, for me. The power of that trust is mind-boggling. Here is this little person, with their own fears and worries, doing everything they can, to please you.
She stepped into the sunlight, turned her magnificent eyes upwards, and captured my heart as if she had just been born. Emotions came flooding in; pride, joy, respect, tenderness, faith, appreciation. When Ciarra was born, I was afraid of what DS would bring. I could never know that in that first instant she locked eyes with me, when I knew with every fiber of my being that she would force me to face my fears, that I was hopelessly lost in her beautiful eyes. I might not have wanted to have a child with Down syndrome, but now I did. And it was time to do some fast learning.
This picture brings back a flood of memories for me. Of that day, when she trusted her mommy enough to come and face her fears, all the while reminding me that I had faced my own, by loving her. The picture shows the incredibly beautiful Brushfield's Spots, a feature of DS. The little white spots dance around her iris like tiny stars. They were the same spots that once moved me to write a poem in which one line said "She kisses the angels, she touches the skies. God gave her stars, to wear in her eyes." God gave her those magical eyes, and He gave me the courage and love to be able to look into them knowing I have risen to this challenge I once so feared. When school stuff or worries about the future scare me, all I have to do is lose myself in those eyes and I am reminded that I am a better person for having her. I am graced with her presense, humbled by her beauty, and forever grateful to have had the opportunity to see the world through her beautiful eyes.

Random Acts of Kindness

http://wilson-six.blogspot.com/2007/08/random-act-of-kindness-rak.html

I saw this post about performing a random act of kindness, and I thought it was a GREAT idea! What kinds of things do you do to make someone else's life a little easier? I love to do little things that make a difference when I can. Tell us how YOU surprised someone this week with a RAK!

remembering you today, buddy.

Make an on-line slide show at www.OneTrueMedia.com

shirts with attitude!

front says:



the back says:








http://www.cafepress.com/downsyndromeart

On Faith - Guest Blogging

This is the first in a planned series of guest-blogs that will appear here in the coming weeks. Thank you to Christina for her beautiful contribution.






It's funny, this world that I live in. I call it my world cause it's not the same as other people's. I have a lot in common with most people. I work full time, I am married, I have two kids, we have WAY too many bills, but something is different in my life than in a lot of other peoples. You see a little over eight years ago, something happened, something that has forever changed my life path, something that has shown me I am not in charge of things, One greater is.

I remember taking the pregnancy test, only a week late, I just had a good feeling that I was pregnant. Came back negative. I was sad, but again kind of relieved cause "Me and Todd never planned on having kids!". Two weeks later still no period and I was starting to wonder if I took it too early, so I took another one. This one was positive! I was surprised at my excitement and shocked at Todd's lack of enthusiasm. Eventually the shock wore off and Todd was just as excited as I was. I went to my prenatal appointments, really enjoyed hearing the babies heartbeat for the first time, feeling the baby move for the first time, it was all just SO neat! Then came my 20 week appointment, the AFP test. My doctor informed me about this test in a way that led me to believe it wasn't an option, it had to be done. So I went and had my blood taken and waited for the results. I was 21, what did they expect to find?! I got a call a few days later telling me I needed to come in. So me and Todd went in and she told me my numbers were off and she asked me if I was positive on my conception date. She referred me for a level III ultrasound to measure the baby to make sure my due date was correct and to see if I was possibly carrying twins. I went right over to the perinatologist, they did their testing and measurements. Told me that things weren't right and that their suggestion was to get an amnio to know for sure. No, that wasn't an option. I wasn't doing anything that could possibly endanger this little life, which I now knew was a girl, inside of me! So in typical sarcastic doctor fashion, I had to sign a paper stating I was denying the amnio, you know to cover their butts so that I couldn't sue basically, and I went on my way.

Once my doctor found out that I denied the amnio, she decided I was too high risk for her and dismissed me from her care. Now the only group in town that would take my case was a high risk clinic in a bad part of town. So I accepted it, I went for my appointments there, agreeing to let them do bi-weekly ultrasounds to keep an eye on the baby. I was secretly laughing inside thinking, My God is going to prove you wrong, you don't know everything with your tests, with your machines, and with all your schooling, My God is still in control. At 34 weeks I was going in for my now weekly ultrasound and the tech was concerned and called in the doctor who ordered a stress test. The baby, who I called Kallie, wasn't moving around like she should have been and the fluid in my sac was really low. The stress results didn't come back good and I was sent to the hospital to be induced. Eighteen stressful hours later, my little peanut was born. She was beautiful, I saw NOTHING wrong with her, God did prove them wrong!

Or so I thought.

The nurses words will forever echo in my head, "Did you hear Downs?" Now keep in mind she was talking to another nurse who was assisting the doctor who was closing me up. I made eye contact with the anesthesiologist, "My baby, what is wrong? What are you hiding from me?" I was terrified. I was shaking uncontrollably. The NICU doctor came down to explain to me that she was tiny, she had IUGR(intra uterine growth retardation), she was going to have to have a platelet transfusion, and she possibly had a hole in her heart. Nothing was mentioned about Down Syndrome.

The next day I finally got to meet my tiny 4lb 5oz angel. She was perfect. Those doctors didn't know what they were talking about! I meet the geneticist that day. She said, "No way, her characteristics are just like yours, but we are doing the chromosome test just to rule it out cause of her heart defect." Ok fine. Five days later, while I was giving Kallie her first bath in preparation to take her home and nurse walks up to me and tells me, "The tests came back, your baby has Trisomy 21 so you can expect problems." and walks away. Thank God my mom was there cause I was in shock, mind you I had Kallie in my hands giving her a bath, so my mom took over and I sat down with tears in my eyes. What is Trisomy 21? Is my baby going to die? My mom told me that T21 is the same thing as Down Syndrome. I cried. I do know that many people go through a grieving process of days, weeks sometimes even years but I just cried a good cry, picked my head up and said "I just love her already so much, it just doesn't matter to me!" I cried again when I told Todd. He didn't cry. He told me about a bumper sticker he saw the first night she was born, while he was driving home. It said "Expect Miracles" and he feels that Kallie just being here and being strong is a miracle.

You see, God did prove them wrong! It may not have been how I wanted him to do it, but in His own way, his Love showed through what was introduced to me as a burden on my family, on any other future children, on my marriage, and the list goes on. God showed me that he did answer my prayers. I prayed for a healthy baby. I got a healthy baby, she needed a few things at birth, but honestly, she was 4 weeks premature and she was quite small, but she never needed resuscitation, never needed any extraordinary means to keep her alive, she was a fighter from the get go.

God got the glory for proving them wrong instead of me....You see I know for sure that if Kallie were born without DS, I, in my selfish nature would have made it about me and lost the message that was being delivered, Love conquers all, without love, there is nothing! That is why disability scares those doctors, they couldn't wrap their heads around the awesome power of love and how it changes things, it changed me......for the better

Christina Schulz
Mother of Kallie (DS, 8) and Brittany

So, Mom, can you explain THAT?

Ciarra rode with me into town tonight, and as usual, chattered my ear off. Her understanding of the world is obviously growing, which is good. But her understanding of the world is obviously growing, which is not so good. Confusing, huh?
Yeah, me too.

"Mom, where's Santa?"
"At the North Pole."
"Why's he at the North Pole?"
"He's getting everything ready for Christmas."
"Where's the sleigh?"
"In the garage, getting a new paintjob."
"Oh. Where's the reindeer?"
"In the stable, eating hay and resting."
"Where is his wife...the...Mrs. Clause?"
"In the kitchen baking cookies."
"Oh."
"Mom?"
"Yes?"
"Santa should not eat too many cookies."
"He shouldn't? How come?"
"He will get too fat. He needs helfy food."
"You know, you are right. Even Santa needs healthy food."
...
...
...
"Mom?"
"Yes, Ciarra?"
"How does Santa fit down the chimney?"
"You mean cause he might be too fat?"
"Yeah. Chimney's are small Mom."
(Thinking quick....)
"You know Santa has some special magic, he wiggles his nose." (Yes, i KNOW, that was bewitched...silly me.)"Then he does his magic and slides right down the chimney."
"Who taught him the magic?"
"Ummm, I'm not sure?"
"The chimney is pretty small. The roof is big though."
"Yes."
"What if Santa forgets the magic and he is too fat to fit?"
"I hope he doesn't forget his magic, that would be sad."
"I hope so too, Mom."




"Mom?"
"Yes, Ciarra?"
"I am gonna tell Santa he has to eat the carrots and leave the cookies for Rudolph this year."