Friends

It's no secret, I'm quick to fire. I've never been known to ponder my thoughts before blurting them out. I'm pretty sure it runs in my family. (Yeah, you know which side ;)

Talking about my friends? I'll set you straight.
About my family? Sure to start a fight.
My kids? Well, it's gonna get ugly.

Good, I'm glad I got that off my chest. One thing you may not know about me, is that there are people in my life that have become my family by circumstance rather than blood. People who I really feel have been put in my life for a reason.

My daughter was born with Down syndrome. A fluke? Maybe by medical definition, but I truly believe it was meant to be. It's almost painful to think of the relationships I would have missed out on. Sure I would have different friends, but there's no friend in the world like someone who has walked a day in your shoes.

My child fighting cancer? Well no doubt about it, cancer sucks, but again can you imagine the people, the friends, the children I would have missed out on? If there's ever an upside to cancer, it's the relationships that form.

There's just something special about these people. They have been there, they've walked the walk and talked the talk, no doubt about it. I get them and they get me. In my mind, they're family.

So bringing you full circle now - what happens when a negative light is shed on one of these persons? An insult thrown at a mother of a child with Down syndrome for instance? You already know. The boxing gloves go on. There's just something about us special needs moms, unless you've abused, neglected or exploited your child, we'll look after each other. We're a bit feisty.

Today in the wonderful world of facebook, one of my fb friends posted an insulting article about one of us, about a mom of a child with Down syndrome. So I bit back (as I always do). To many, it all goes back to politics. To me, well it was personal. I respect this mom, as I do all mom's facing the challenges and embracing the joys of raising children with special needs. What I LOVE about this mom is she has the opportunity to be an extremely powerful advocate for our kids.

I hope my fb friend, and others reading this, can understand now why the jokes, the attacks, the "top ten's" are irritating and frustrating. I've said it before and I'll say it again. Can't we all just move on?

Cancer Sucks

We have some friends who are in need of prayer warriors, so who better to ask than our readers!!! You can read their personal stories through their caring bridge sites by clicking on their name.

Meet Claire. She's a precious little girl we met towards the end of Chelea's treatment. She doesn't have leukemia, but her cancer was miraculously cured quickly with some intense chemotherapy. We were thrilled to see her parents in October and hear of her good results. They are now facing a possible relapse though as Claire's AFP numbers are on the rise which likely indicates the worst. They had scans done today to check and see what is going on with her, but they won't get results until Wednesday. Please, please pray that her cancer remains in remission.

Also, I've mentioned our buddy Santos before. He is in Arizona with his mother seeking alternative therapies for his second relapse. Santos is one tough, fun-loving, active kid, and we love him! Please pray that these natural therapies will bring him into remission. If they are unable to get him into remission, these treatments should at least give him more time, and he will still be able to keep his energy and have a very high quality of life and feel good. He has spent way to much time in the hospital already and there just weren't any more chemo options for Santos in KC. Also if you live in the area and would like to help Santos and his family, they are holding a fundraiser later this month. If you can, please consider attending, it looks like A LOT of fun!!! Feel free to pass this fundraising information on through your blog or through emails.



Bowling Fundraiser for Santos

WHEN: JAN. 31, 2009
WHERE: RANCH BOWL
5604 State Avenue, Kansas City, KS 66102
TIME: 1:00 PM to 4:30 PM
$20.00 PER ADULT TO BOWL
$10.00 PER STUDENT TO BOWL
$5.00 PER TACO DINNER PLATE (4 tacos and rice)
Everyone that bowls will be entered into a raffle.

If you're interested in going let me know, we're up for the fun! We'll probably find a babysitter for Chelsea (and maybe Logan).

New Friends, Old Friends

Last night we were eating dinner on the patio at a small Mexican restaurant near our home. As we were finishing our meal, I noticed a family who was seated next to us. They had an adorable little boy, about Chelsea's age who looked awfully familiar. I already knew, but I asked anyways ... "did you shave his head?" You see we're members of the same club, so I knew it would be okay for me to ask. Looking like they were surprised at my comment, the shook their heads no. I replied in understanding, "oh ... chemo?" They affirmed my suspicions and when I asked what kind of cancer they told me he had leukemia, ALL. At this point I'm sure they thought I was crazy, so I immediately explained that we've been there and I pointed to Chelsea pointing out that she just finished treatment for AML. It's funny because you could see everything clicking now, they're faces showed some relief to know that I wasn't some extremely rude, crazy woman. As we left I gave them our blog and email to check in on Chelsea and crew, and the mother reciprocated. We will be adding little Hunter to our prayers as he finishes his intensification and goes into maintenance for the next couple of years.

I would also like to ask for prayers for another friend, who we met while in the hospital. Baby McKensie was diagnosed with AML 6 months after Chelsea, so I spent a lot of time with her and her mom during those long hospital stays. Parents of kids with AML tend to stick together because we're all stuck in the hospital for such long periods of time. McKensie's family just found out this week that she has relapsed. She was preparing for a bone marrow transplant later this month, but now they must give her a different protocol of chemo in hopes the leukemia will go into remission again. They cannot do the transplant until the cancer is in remission. I know this family would appreciate all your prayers. Their faith remains strong throughout these trying times and I know that McKensie is in the best hands possible!

Here's a picture on one of our last days in the hospital of Chelsea and her little buddy McKensie. It's one of my favorite pictures.