Saturday, June 27, 2009


I have so many pictures to add! I need to upload them to the computer... which may be sometime during the next year or two. We've celebrated Aubreys birthday, and we've had hospital visits, we have bathroom pics, we have rash pics, we have bump on the head pics. Since I've waited so long to put them on the computer, it's going to take even longer to organize them.

Aubreys party was great. She had friends from school join us, and we celebrated with noise makers, silly string, bubbles, leis, and lots of other messy things. It was great! It's so hard to believe she's 4 already! She was so amazing today. Very helpful. We cleaned house ALL day! So we rewarded her with a trip to Baskin Robbins. She loved it!

The hospital visits, rash pics, and bump on the head pics all come from Bailey. Our most recent hospital visit was last week when her temp reached 105.1. I've NEVER seen our thermometer get that high. We were able to get her temp under control and we were sent home. We're doing breathing treatments and giving her meds to hopefully get this gunk cleared up. She's been sick since the first week in May! The rash pics are from today, that's a new symptom she decided to add recently. And the bump on the head is from our Down syndrome picnic. I was sitting in front of her on the picnic table and she decided to lean to the side and fall off onto the concrete floor beneath us. Thankfully, I reacted quickly and caught her before she made hard impact. So, the result was a bruised and scratched head.

Like Bailey, I have been sick for a few months. I have an appointment next week with ENT, and hopefully we can come up with a treatment plan and get this bug out of our house. We'll also continue to work with Bailey's doctor to see if we can relieve some of her symptoms and determine a cause.


Friday, June 19, 2009

I Want to Have Down Syndrome

Aubrey asks each day what we have planned for the next day. So, this morning she asked what we have planned for tomorrow. I told her we have our Down syndrome picnic tomorrow. Then she asked if she has Down syndrome, and I explained to her that she doesn't have Down syndrome, but her sister Bailey does have Down syndrome.

Then she asked if Bailey's friends have Down syndrome, so I named all of Bailey's friends who have Down syndrome. Then she asked if the people on TV have Down syndrome, so I explained about the little girls and boys we see on the Baby Signing Times DVD who have Down syndrome. Then she asked if she has friends who have Down syndrome, and that's where I made a mistake. I said "yes, Taylor has Down syndrome". Then Aubrey started crying, and saying she wants to have Down syndrome.

I tried to explain to her that it's something you're born with, and that those who are born with Down syndrome need people like her to help them advocate for their needs. Then I had to explain what advocate means, and finally it was time for her to go to daycare! Whew!

I want her to understand what Down syndrome is, and I also want her to feel free to ask questions. But, I'm not sure how to handle it. I've wondered for the past two years what these conversations would be like. Now that I've had one, I wonder what future conversations will be like, and how to handle them.


My Nails Have Been Painted for 2 Years

So, my grandmother ended up in the hospital over the weekend. She, too, has Alzheimer's or some other form of dementia. This is the first time I've seen her this confused. First, my dad commented about how nice her nails look, and she said "well Ronnie, they've been like this for the past 2 years". Then she asked me if I still live on Airport Thruway, and that road is in a different state and is also where my sister lives, not me. It's interesting to see these changes. She has moments where she's completely okay, then she has moments like those I just discussed. I'll continue to be thankful for the moments we have, but she changes each and every time I see her. It's becoming more and more difficult for her to walk. Which is something I've read numerous times about Alzheimer's. She is also easily irritated, and is often confrontational. This is such a sad sad disease.


Wednesday, June 10, 2009

Alzheimer's Poem

Dear Dad
byJulie Western-Zuge

Dear Dad...
How can I tell you now,
Just how much you've always meant,
Just how proud I've always been

How can I tell you now,
That you have always been my hero,
Everything I want to be

Here you are, this shell of the father I once knew,
Whose face is more dear to me each passing day
Even in your pain making me proud, still

Your sense of humor endears you to all around;
I see the women who can now barely function,
The smiles that light their faces when you stop to kid with them.

What a man you are,
Still the greatest man I've ever known,
Still my biggest hero

Here you are, a victim of life's most hideous disease,
Yet you go on making others feel special,
Making a difference in so many lives

Dear Dad, can I ever be so great as you?
Can I ever let you know how much you mean?
You are one of God's most precious angels

And I thank Him for each day
He allows us to go on having time together,
As this cruel disease slowly steals you from me.

If you'd like to join us for the Memory Walk, or if you'd like to donate please click on the Memory Walk button on the side bar.

These past few years have been very difficult for everyone involved, especially for my dad. Nobody deserves this, especially someone who hasn't even reached the age of 60. I know as each day passes he will continue to face challenges brought before him. He will continue to be the great man he has always been. I can only hope he realizes just how much he is loved and needed.