"I know what I can do, I can sell my autograph to raise money for Kidd's Kids"

Rowan and our entire family were very blessed this past November. We went to Disney World with Kidd's Kids. They are an organization that takes 50 children with chronic and terminal illnesses (and their families) all to Disney World- together! It was the trip of a lifetime, not just for Rowan, but for all of us. For 5 whole days he got to laugh, play, ride rides, hang out with other kids like himself, and spend time with his family, all outside of a hospital for a change. He had a blast, made some great friends, and have enough pictures and memories to last a lifetime. Here are just a few of those photos. When I asked Rowan how he could help them raise money for the kids they will take this coming year, he immediately responded "I will sell my autograph!" For more information about that endeavor, read on after the pictures...

I'm pretty sure that the smiles on our faces in these pictures speak volumes for what a great trip this was for our family and what an amazing charity Kidd's Kids is. If you would like to find out more about what they do check out their website at www.kiddskids.com. If you would like to help Rowan raise money for them, send him a donation check, made out to Kidd's Kids, include your return address and he will autograph a copy of the picture below and mail it back to you. It is of course, the least Rowan can do:-)

Mail donations to:
Rowan Windham
420 River Chase Drive
New Braunfels, Texas 78132
(remember to make checks out to Kidd's Kids though)

Fire, Rain, God and Angels...

Rowan and I were just driving to go pick Zoe up and as we drove down the road, Rowan brought up all the recent wildfires and he decided to pray for rain to help stop them. His prayer went something like this:

"Dear God, Tomorrow please don't sleep very much, just take cat naps because you have a lot to do. Send your angels to make rain over all the other states and you take the biggest...Texas. We need you to make a LOT of rain here. Thank you. I love you and will always love you, and I will always keep you in my hands."

I reached back and asked him for a high five, telling him that was an awesome prayer, but he said "Sorry, I really can't high five you because I'm making fists to keep God in my hands." I tried not to laugh while he decided, "Well, maybe I could keep him in my heart instead of my hands. That would be better right?" I told him it would, and he immediately said "OK. Do you have any tape?" I tried harder not to laugh, and reassured him that he didn't need to tape God there, all he had to do was to ask him. Here is how he asked:

"Dear God, Can you please put your heart in my heart....no- all of you- your heart, your kidneys, your bones, lungs- put all of you in there. Thank you."

Then he asked about angels and if they were "his family or his army or pieces of him or what?" I told him that angels helped Him protect us, and he said "Yeah, 'God's Protection Army', lets just call them that for now."

I don't really know what else to add to this post because Rowan said it all...I am completely amazed by his faith and understanding. I had to pull over to write some of this down immediately, because I was afraid to forget a single precious nugget of it! This was quite possibly one of the best conversations I've ever had, and it was with a 5 year old. Thank you God:-) for special car rides like this one tonight.

Happy to be 5 and...alive!

I had a conversation with Rowan this week that again just blew me away. We were laying in bed talking and he said "Mommy, I know people were so nice to me in the hospital for my birthday because they felt bad for me to be there for my birthday again, but I don't get it." When I asked him what he didn't understand he said "Well, they should just be glad I did turn 5." I told him of course they were, but he insisted "No, I mean, they should be glad I'm 5 and I'm alive." Of course that brought tears to my eyes, mainly because it's so true, but also because you just don't expect your 5 year old to realize that, or to bring it up. Then he added, "I mean, some people don't even get to be 5....like Chrissie."

See Rowan just spent the 4th of his 5 birthdays so far hospitalized. He has been in the hospital A LOT... over 600 days of his life already, and unfortunately a lot of those have been holidays and birthdays too.

Here he was, this innocent, precious little boy, who has been so very sick so much of his life, just a little over a week ago, laying on the table in trauma room 1 of the Children's Hospital emergency room, fighting a life threatening septic infection yet again.

And here he is now, home again, feeling better, and simply "glad to be 5 and alive." Amazing! He has such a sense of appreciation and contentment, even despite all that he endures on a daily basis. I wish we all could be more like that.






As he mentioned, not everyone makes it to 5, which is a very unfortunate reality, and one that he has already dealt with. He mentioned Chrissie (Patterson), whom I have posted about several times before. She is his "girlfriend in heaven", who passed away over a year ago when she was just 4 years old. The Patterson's wanted Rowan to have a 5 year old birthday celebration that was not in the hospital, and they kindly invited us out to their ranch to celebrate with him last weekend and so he could ride Chrissie's horse "Navidad".

Rowan was very excited, and he drew a picture to go lay on Chrissie's grave, "since she didn't get to have a 5 year old party." Here is the picture he drew for Chrissie, and then him showing it to her Mom Lorraine.

When he explained the picture to me he said "This is me, giving Chrissie a flower that is a heart and a flower that is a rainbow, and those dots coming down are tears, but they are happy tears".

He did get to place the picture at her gravesite and he knelt down and prayed for a minute and said she liked it a lot. When all the kids did the butterfly pinata (which Rowan thought Chrissie would have loved because it had pink wings) the wings got knocked off, and Rowan wanted to take the wings down to put at her grave as well. Here he is doing just that. And I'm pretty sure he is right, she likes it a lot.

I find myself wishing Rowan didn't have to go through so much, and wondering why and how so many many tough things can be heaped on one small boy...and then he says the things he does, and shows me what God is undoubtedly trying to show me through him... just be happy, be content, trust that God knows what He's doing, and find the joy that is in everything...even the bad stuff. Moments like we had this past weekend, prove just that! Thank you Patterson family for sharing your ranch with us, your family, your story of hope, and most importantly your angel Chrissie!

Here is Rowan blowing another kiss towards Chrissie's gravesite, just before he left for the day...

Yay- I didn't miss "Fwing" (Spring)

I know this post is late. I apologize, but I had started it when Rowan got out of the hospital a couple weeks ago, during Spring Break, and just realized that I never posted it. Better late than never I guess....

While in the hospital again this past month, Rowan started to get concerned that he was going to miss "Fwing" being in there too long. It's his favorite time of year. He loves it when the walking sticks, crickets and butterflies start coming out again, which means bug catching time for Rowan (and anyone he can talk into going out with him and his nets). He also loves looking at all the wild flowers from the car window as we drive through the Hill Country and into San Antonio.

One of my friends posted a picture of the first bluebonnet she saw on her Facebook page. He sat up in his hospital bed, his eyes lit up, and he got so excited, saying "Oh good, the bluebonnets are coming out! I gotta get outta here and see them".

On the way home from the hospital, after another 10 day stay, he searched and searched out the window looking for any sign of bluebonnets. Any of you who live around here know that we did not get enough good rain often enough this year for a very big crop of bluebonnets. So, our hour long ride home was kind of rough. He was sad and thought he had missed them after all. Well, finally, on FM 306, just a mile or so from home, he burst into happy tears and yelled "Mom-STOP! I didn't miss Fwing! Look! God knew I wanted to see bluebonnets so bad so he saved me some!"

I of course pulled over immediately, and discovered that he was right. We found the tiniest little patch of blue bonnets on the side of the road. Here are the pictures of my precious angel, still with his hospital id band on his wrist, literally taking time to stop and smell the flowers. I am again, truly amazed at how he can be so overjoyed with things we take for granted every day, especially with all he's been through. I think he would gladly stay in the hospital another 10 days, as long as he could see a few tiny little blue bonnets on the side of the road when he got out. Hope these pictures make you smile and that you take time to appreciate the little things yourself too...and think of Rowan next time you see some wildflowers on the side of the road:-)

Sad to be here glad to be here...

Rowan woke up having a kind of rough morning: feeling sick, crying, saying that he wanted to be home now already.

Then he reached for his "Chwissie Wion", hugged it tight and closed his eyes for a minute.

When he opened them he said: "Ok I feel better. Its good to be here and bad to be here. I'm sad to be here and glad to be here."

He said, "Chrissie really is helping me. And at least there are 3 good things about hosipals...toys, bisitors, and getting better."

Thank you Lorraine and the entire Patterson Family, for Chrissie's story and for the jingly "Chwissie" lion to remind him of her. As you can see, good or bad, it never leaves his side in here, especially when he is sleeping. We love you!

"...But today could be better..."

Sorry I haven't posted a blog for a couple weeks. Rowan's been running fever for several weeks with his neupogen bone marrow infusions and then spiked a high fever on St. Patrick's Day, landing us back int he hospital last week. We are still here while he battles a septic infection, with two different bacterial bugs in his bloodstream. He has been getting 6 rounds of iv antibiotics each day. And now he's come down with some type of "normal sickness" while he is here too, and is running a fever again and has a nasty cough. They just did a chest xray to check on that and we are waiting for results. He is supposed to be getting another neupogen infusion here today as well as an echocardiagram to check for colonization of bacteria in the heart wall. Yesterday we had a little mis-hap with his g-tube, breaking off a piece of plastic inside it so we had to remove the end of his tube, clamp him off with hemastats and try to find someone to repair it.

Despite all of this, Rowan has kept his ever-positive outlook. This morning when he woke up, after a rough night of fevers, coughing fits and waves of nausea, Rowan woke up with this wise statement..."well yesterday was horrible but the good thing is that we wake up every day until we die and the new day COULD be better...and today WILL be better".

Gotta love this kid!

Pancakes for Rowan!

Despite all his dietary limitations, Rowan doesn't really complain much about not getting to eat many regular foods by mouth, even though everyone else around him can. He does however LOVE to smell our food. And pancakes has been the one thing that he says he hopes he can have when he gets in heaven...he just thinks they smell so great. Well I have racked my brain for 2 years, checked all kinds of recipes and natural food stores, trying to figure out a way to make him some type of pancake. So he doesn't have to wait to get to heaven to have pancakes:-) He can't have any type of protien for sure, and no eggs, milk, or any type of flour, etc. So, I have thought about potato pancakes but haven't come up with a way to make them stick together like pancake batter. Well, last week I finally came across a product that is a mix for potato pancakes, but this one only has potato starch to bind it together. I was jumping up and down in the aisle when I read the ingredients. You have no idea how happy I was! Rowan cried happy tears when I got home. I made them and he has been eating them for a week now. Pancakes, finally, pancakes for Rowan!