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!

Sweet considerate Rowan...and precious puppy Mr. Trousers are gonna take care of each other now.

So, Rowan finally got the puppy God promised him. "Mr. Maxwell Trousers Joy Navidad" flew in from Utah Sunday afternoon and is settling in here at our house. You may know or remember that Rowan informed us about a month or so before Christmas this year that God had asked him if he wanted a puppy and that he had told God yes. We asked him, "You mean you asked God for a puppy?" to which he quickly explained again, "No, God asked ME". Knowing we couldn't tell God no, we started our search for a new bull mastiff puppy (Harley, our former mastiff died about a year ago and Rowan and Ian have wanted another one ever since). Unfortunately I couldn't find any good local breeders, and no mastiff puppies that would be ready by Christmas. I finally found a great breeder in Utah though, who had a litter due before Christmas, so we decided that would have to do. They sent us video footage so we could show Rowan and Ian the puppy on Christmas morning. Well, Rowan got very sick and started going into septic shock Christmas morning, so he wasn't quite as excited about it as we had hoped. He cried and laid down on the floor asking me to take him to the hospital, just minutes after we showed him the video. The past 2 months, while the puppy was getting old enough to travel away from his Momma, Rowan has eagerly been awaiting his puppy, Mr. Trousers. He and Ian had a paper chain going and were pulling one link off a day for nearly 2 months. Sunday was the big day, and we all finally got to meet Mr. Trousers in person. He is GORGEOUS and such a sweet thing! Here are some pictures of the newest member of our family.

Last night, just his second night here in Texas, while I was putting him in his crate to go to sleep for the night, Mr. Trousers started whining and crying. Rowan got very sad and suddenly started crying himself and said, "Mom, I thought God wanted me to have him, but you can send him back." I was shocked and asked why. Rowan tearfully said "I feel bad I stole him from his Mommy in Utah. That's why he's crying. He misses her." I explained to him that he just had to get used to sleeping in there alone and that the owners couldn't keep all the puppies anyway, so Mr. Trousers NEEDED a family and NEEDED us. I left the room for a few minutes and Rowan was laying down making little puppy noises toward the dog's crate and he looked up at me and said "I'm learning how to talk to him. He wants to know why I'm attached to so many things." I asked Rowan what he told him and he said "I told him it's ok, I just HAVE to be. I told him it keeps me healthy and alive. Now he doesn't feel bad for me and I don't feel bad for him. We're gonna take care of each other!"

God bless this kid! And thank you God for asking Rowan if he wanted a puppy:-)

My big boy, making big decisions!

Rowan started neupogen therapy this past week, in an effort to stimulate his bone marrow production and improve his immune system. One of the side effects is bone pain, and Rowan did experience some pretty bad pain in his hips after his first dose. This week, he will start recieving the neupogen 3 times a week. We are praying the pain is not too severe, but they say it typically gets worse as you continue to get it.

I wanted to share a story with you from the visit to the Children's Cancer & Blood Center Clinic to get this first dose, that shows just how mature and tough Rowan is...I'd say way beyond his years...

When we first arrived they asked if he had EMLA on, which is a numbing cream that you can apply before you need a shot or blood drawn. I told them that he had a central line so he didn't need the EMLA, but they were insistent that it had to be administered by a shot. Rowan of course heard this news and started to cry. He just almost never needs to be stuck because of his central iv line, and he hates "pokes" more than anything! He got very upset at first, and I asked them if they were sure we couldn't use the line, because it had been my understanding that it would be infused via his line. The nurse told him she would go get the EMLA and some ice and that he could decide where he wanted the shot, then she left the room. Here are a few pictures of Rowan visibly upset about needing a "poke" but trying so hard to calm down and thinking about where he would get the shot.

Here Rowan is after about 10 minutes, and after I asked the nurse to go call the doctor and just make sure he didn't want it infused through his iv line. He suddenly stopped crying, wiped his tears, looked out the window for a minute and then said "It's ok Mom, I'll do it. They can do the shot in this leg. Because I have my play to do, so I know I need this so I don't get sick. You can go get her. I'm ok now."

I was blown away, and so proud of Rowan. Now thank God, they did confirm with the doctor that Rowan was able to get the neupogen via his line, so he didn't end up needing the poke after all. But still, he had reasoned with himself and made that big, big boy decision that it was ok to get the shot and even picked where he wanted it. I hate seeing him in pain, anymore than he already has to be, but to see him accept more pain because he knew it was for his own good...that was just amazing!

Here is one last picture, of Rowan at his play practice later in the week. This is what made him come to grips with getting a shot. The reminder that staying well meant that he would get to go hang out with his big sister Zoe and all her highschool friends, and all the pretty girls who fall all over him there, while they practice for the play.

I love you Rowan, you are so strong, and you make such big decisions for a 4 year old! I'm very proud of you.

Every Day's an Adventure!

Rowan's health issues mean that his days are pretty well scheduled, he spends a lot of time "attached" to things, and he doesn't get to go out very much or do many things. See, his gi system doesn't work well so he gets fed by gtube pretty much round the clock. Then his pancreas doesn't function fully so he doesn't make the enzymes needed to break food down anyway, so he gets fed by the iv line in his chest 12 hours a night too. He also sleeps with a pulse oximeter attached to his toe to monitor his heart and oxygen sats, and with nasal canula oxygen on his face. Rowan also has a severe protein allergy and is allergic to most all foods. His oral diet consists of potatoes, water and sugar candy, sometimes cucumber, but thats about it. Rowan's immune system is compromised too which means that we have to watch his white blood cell count and anc very closely (weekly labs) and when he is neutrapenic, we keep him home away from whatever germs we can avoid. He doesn't go to preschool or daycare, never plays at McDonald's, doesn't go to friends houses to play, etc. He mostly stays at home with us and his home nurse, "attached" to anywhere from 1 to 4 machines at a time. His best friends are nurses and the ones he makes at the infusion clinic. Not very adventurous you might think, but Rowan does.......

See, I started something called "Adventure Day Saturday" with Rowan recently, because he has been stuck at home for over a month straight now and he watches Zoe and Ian leave for school, karate, and other activities all the time. I felt bad about him not getting to do anything outside of our house for so long. So, after we take Zoe to her theater troupe practice on Saturday's, Rowan and I drive around until we find a place to take a walk, or go on an "adventure". As long as it is someplace new and there aren't a lot of people around, it's a perfect adventure to us. We've walked around a couple parks, down by the river in our neighborhood, etc. Well, this past Saturday we didn't get to do our "Saturday Adventure Day" and I told Rowan I was sorry we missed it. He thought for a minute and looked at me and said,

"Mom, isn't ebry day an adventure anyway? Cause we don't eben know if we'll be here tomorrow or what God will let us do the next day, right?"

God bless this kid! He's right, we should live each day like it's an adventure and like there might not be a tomorrow. Thanks for reminding me of that Rowan:-)

Rowan can make sweet music, no matter what the circumstances...

One of the neatest things about our son Rowan is his ability to find the good in every situation, despite all the not so pleasant things he has to endure in his life due to his health. Whether he is stuck in the hospital, spending the day at the clinic or God-willing at home, Rowan can find a way to have fun! Today's blog will be short in words, but big on pictures, because I believe these photos will show you exactly what I mean. See Rowan loves to make music, especially by playing drums. He got an awesome light up blue flame drum set this Christmas. Of course he didn't get to open them up until New Year's Eve when he got out of the hospital, but the timing was perfect anyway. But before he was lucky enough to have this awesome drum set, I found pictures of him in the hospital on several occassions where he had made drums of his own. Once with some plastic spoons and sterile water bottles, and another time with some glow sticks and just his hospital bed. What I want you to notice (besides how cute he is:-) is the fact that if you didn't look at the background of any of these pictures, if you just focus on his face and smile, you really couldn't tell which times he was stuck in a hospital or which times were at home. He is happy as can be in ALL of them, and that's Rowan...happy in all situations...the good, the bad, the difficult...he is content always. Wish we all could be like that, don't you? On second look, what's also funny is how nothing stops him. In the pictures of him playing drums at home I just noticed two things. In one of them he has his back pack feeding pump on and he is just drumming away, and in the other one taken at home he has an iv antibiotic ball hanging around his neck! Yep, keep rockin Rowan and keep that positive attitude with you always! We could learn a lot from this kid.

Enjoy the pictures and remember to make your own sweet music this week, no matter what's going on in your life:-)