Thank you, Mary Kate

We met Mary Kate McKenna last year when she did a photo shoot of Seamus for "The Littlest Heroes Project". Seamus and MK hit it off right away and although we only spent a few hours with her, we've kept in close touch.

She is getting married this weekend and this what she posted yesterday on her Facebook account:

Many of you have asked what you can do for our wedding- I have a simple request- please donate to the Cystic Fibrosis Foundation in honor of one of my very favorite people on this earth, little Seamus, who stole my heart when I photographed him and his family last year. (here's some photos: http://bit.ly/seamusc) Seamu...s (child of James Coleman and Julie Scheib Coleman) is an incredible kid- so let's use this time of celebration to help find a cure for this painful disease. Thank you all so much! http://www.causes.com/causes/469?m=9e4cc0c7&recruiter_id=398845

She is the one who should be recieving gifts yet she gave us the best gift of all. I can never repay her. She truly is amazing.

Not only is she a great person, but she's also a fabulous photographer. Here's a video I made of her photos. I've posted it before but I can watch it over and over.

Make an on-line slideshow at www.OneTrueMedia.com

Some of the worst words a parent could ever hear (besides "I'm sorry, your baby has Cystic Fibrosis) are from your child begging you to make the pain stop and being completely helpless.

"Please Mommy, make them stop. I said please." It breaks my heart every time we are in the hospital and Seamus pleads with us to stop the doctors/nurses from doing some very painful and scary procedure. We are supposed to protect him and I feel like we are letting him down. I put on a good face and act strong so he won't be as scared but I feel like a piece of his innocence is taken away each time.

Finally after screwing around with home treatments that weren't making any progress, he finally got admitted last night. He is doing okay but is still not clear after 24 hours straight on Golytely.

I was feeling pretty low today and then I thought about all the great things we've been able to do that we wouldn't have if Seamus hadn't been in the hospital 19 times. We've spent hours and hours playing with play dough, drawing pictures, telling silly stories, and laughing. We do these things at home too but while we're here, there are less distractions and more time to just concentrate on each other. Obviously, it's not all fun and games (see paragraph two) but it's not all bad either.

I hope that's what Seamus can remember too when he thinks back on his childhood hospital stays.

Happy Birthday #4

My Darling Seamus,

Today you turn four, such a big boy! Sometimes I think the time has flown by but when I think back to all you have gone through, I can hardly believe it has fit into four little years.

This year has been another eventful one. You have learned so much and have matured in so many ways. Everyday you show us, beyond our wildest imaginations, how brave and strong you are. On days that I do not feel very brave or very strong, you are my inspiration to keep fighting even when it seems impossible.

This year you have made leaps in your education. You have mastered letters and numbers and are taking the first steps in reading. Your imagination and curiosity are immense and everyday you pick a new "word of the day" about something you're interested in.

You continue to be the most empathetic child I've ever known. Whether it's comforting Ga or stoppping to help the kids at soccer class who have fallen, you are always thinking about how others feel.

This is one of our favorite verses from one of our favorite books:

"If you'd never been born, well what would you be?
You might be a fish! Or a toad in a tree!
You might be a door knob! Or three baked potatoes!
You might be a bag full of hard green tomatoes!
Or worse than all that... why, you might be a
WASN'T!
A Wasn't has no fun at all. No, he doesn't.
A Wasn't just isn't. He just isn't present.
But you... you ARE YOU! And now, isn't that pleasant!"
-- Dr. Seuss, from Happy Birthday To You!

I love you, my little porcupine and I am so glad you are you. You will always be my bestest boy.
Love-
Mommy

Goodbye My Friend

We lost a very close friend this week. Our cat, Izzy, had to be put to sleep on Tuesday because he had "thrown a clot" which means somehow a blood clot found it's way to his hind end and we found him paralyzed on the basement floor. By the time James got him to the vet, his heart was giving out and his lungs were full of fluid.

Izzy was fifteen and had numerous health problems so the vet was always amazed at each visit at how well he was doing. He was my original baby. We were together long before I met James or ever thought about Seamus and when I decided to move to DC all alone fourteen years ago, he was the one who kept me company on lonely Friday nights. I also had another cat, Alice, but I adopted her as an adult and she never really needed me the way Izzy did. Izzy was cool because he was very loving but not overly needy. He was huge, 32 pounds pre-diabetes, and was much more dog-like, than cat-like.

He was so sweet with Seamus. I think they saw each other as kindred spirits, both took lots of medicine and went to the doctor's often. After this last hospitalization, Seamus was lying on the couch one day getting his dreaded hydrocortisone suppository and was screaming and sobbing. Izzy ran right over and tried to jump up in between us . After we pushed him away, he ran to the end table near Seamus' head and jumped up again. Now Izzy was huge and old so he did not jump often, but nothing was keeping him from his pal Seamus. We pushed him away again and then he jumped onto the back of the couch, which I have never seen him do. He reached his paws down to touch Seamus to let him know he would protect him. And it calmed Seamus right down.

Tuesday night, we told Seamus that Izzy was in heaven now with his grandpa and was keeping him company. He said "That's a good idea." We went on to say that Izzy wasn't sick anymore and didn't need any more shots or medicine. Seamus looked really happy and I knew he was thinking about his own treatments and medicine. Then he said "Do they have little kid stuff in heaven?" I had to choke back the tears when James said "Yes, they do" and all I could think of was "Yes, but I wish they didn't need to."

Good bye, Izzy, my love. We will all miss you terribly.

Why?

We were looking at the beautiful pictures of our bloggy friend, Natalia, and her baby, Scarlett, yesterday. I pointed to Natalia and said she has CF like you.

Seamus asked "Does the baby have CF too?"

"No, just the Mommy."

"Why?"

"Some people have it and some people don't, just like Daddy and I don't."

"Do I still have CF?"

"Yes, Honey."

"Why?"

This is getting really hard.

Heart

I would love to see the world through Seamus' eyes. We went to the movie "Earth" yesterday, which is like the Discovery series "Planet Earth" and shows animals in their natural habitat. I was a little worried because I read some parts were scary for little ones. I tried to warn him ahead of time that if he was scared I would cover his eyes or we could leave. No reason to worry.

In what is probably the scariest scene, a cheetah is hunting a gazelle. Everything is in slow motion with the two animals running side by side. Seamus thought they were playing. The cheetah catches up to the gazelle and grabs his hind end and pulls it towards him. Seamus said "Oh, he loves her." Then in slow motion the cheetah embraces the gazelle and slowly his mouth reaches for the throat. Then the scene cuts away. Seamus said "Oh, they were hugging."

Later in the day, I let him run through the sprinkler in our front yard and before you knew it, we had all the neighborhood kids joining him. Seamus ate it right up and played the perfect little host, even though most of the kids were about 9 or 10. He met a new boy, Joey, that he thought was the bees knees. Eventually the sprinkler activities turned into a squirt gun battle. His greatest love, Stephanie, who can usually do no wrong was trying to sneak up on Joey and was enlisting Seamus' help. She told him to get Joey because "he was a bad guy". Seamus stopped in his tracks and yelled "He is not a bad guy, he's a really good guy."

I just love how he doesn't see the bad in anybody, a cheetah or his new pal Joey. Everybody gets the benefit of the doubt with no preconceived notions. Maybe it's just three year old innocence but I like to think it's also his huge heart.

BTW, we ended up doing three clean-out treatments at home. They were not very successful but seemed to temporarily do the trick. We have to continue to watch him closely.

Again with the poop

Warning: Lots of poop talk ahead

Over the past couple of weeks, it's been evident that Seamus is heading down the blockage road again even with three caps of Miralax every day. After a few days of crying when he went poop and vomiting huge gobs of mucus yesterday, we knew it was time to get cleaned out. He's such a trooper and never complains and when we went in for x-rays yesterday, he was a little charmer. Last night in bed, I thanked him for being such a good boy and he said it was the best part of the day. That definitely makes it easier on me, knowing he's not afraid or upset.

So he isn't completely blocked but he does have a significant back-up. His stools are extremely mucusy and sticky even by CF standards so any back-up is like glue and doesn't clear out easily. We started with a home treatment of a liter of Go-lytely, which normally is a huge amount, but not for my Super Sticky Seamus. It barely touched it. We're going to do another round tomorrow but if that doesn't work, we'll probably end up going in to the hospital. They basically do the same thing we do with the Go-lytely but they can do larger doses and keep in eye on his electrolytes and give him more x-rays to see how it's progressing.

Phoenix's mom, Angela, posted this video today. Please say a prayer and think good thoughts for Angela today. She's been having a rough time lately. She's such a special person and does so much for the CF cause. When we first found out about Seamus' diagnosis, someone gave me this poem and I've always loved it. I love Holland more than I could ever have imagined.

Bedtime

Seamus and I have a routine every night. He brushes his teeth, gets his pj's on and we read a bedtime story (or 4 or 5). Then we cuddle in my bed and chat for a little while until he's ready for his bed. These are some of my favorite times and something I hope he always remembers about his childhood.

Tonight, we read a Dora the Explorer book about the circus, then we named all the colors in Spanish, even all the made up colors like pink-blue and brown-white.

S: "Seamus is tired. Is Mommy sleepy? Is Pa sleeping in Heaven?"
M: "Yes, he is, Sweetie"
S: "What color is his plane?"

It took me a minute and then I remembered this conversation we had last summer.

M: "He's not in a plane, Honey. He's in Heaven."
S: "Heaven is in the sky, right? So he's in a plane. Why is he in Heaven?"
M: "He was very old and sick with cancer."
S: "Why was he old and sick?"
M: "Some people just get cancer"
S: "Will I get cancers?"
M: "No, Honey. Pa is happy now and he's not sick anymore. He doesn't need to use his wheelchair and he can dance."
S: "He can dance? Good." Then I heard him softly whisper "wheelchair, wheelchair".
S: "Mommy, how do you spell wheelchair?"
M: "W-H-E-E-L-C-H-A-I-R"
S: "Wheelchairs have wheels. What else has wheels?"

He rolled over on his elbows and looked just like Doris Day in Pillow Talk while we listed everything from cars to wheelbarrows. He thought of some good ones like skateboards and "sometimes, beds have wheels" and of course, planes.

I love how his brain works.

Tough Questions

Seamus is feeling better. His cough finally went away and his culture from last week's clinic visit was clear!

Lately, Seamus has been very inquisitive and not about simple things. He has three friends who have pregnant Mommies. He knows that means they are going to have babies and he asked me the other day when we would have a new baby. He has also been talking a lot about his grandfather, Pa, who passed away last August. Seamus knows he's in Heaven and that he is watching us from up there but he asked recently "But what is Heaven?"

Normally, I would answer these questions with a very simple explanation, but that no longer seems to satisify him. It has started me thinking about how I'm going to handle the really tough questions about his health. He knows he has CF and needs to do his treatments and medicine to stay healthy and for now that's fine. But he's going to start to read soon and I don't want him to read something scary somewhere and think we were lying to him his whole life. I know there will be a cure in Seamus' lifetime but there is a lot of misinformation out there and I would hate for him to stumble across something that would frighten him.

For all the adults with CF out there, how did you find out about the scary facts of CF? Did you parents tell you or did you find out on your own? If the latter, how did it make you feel?

For any CF parents, have any of you had to deal with this yet?

Inauguration

I've been meaning to write about the Inauguration. We live just a few miles from the Capitol building but we decided it was going to be too crazy to try to go down there. I watched it on tv with Ga and Seamus and Daddy went to a neighborhood party to celebrate.

Seamus has known about Barack Obama for a long time. I didn't know how much to get into it the importance of the occasion with him because as far as he's concerned there's nothing that needs to be discussed. He sees absolutely no difference between Obama and any other man so of course he could be president. We live in a very diverse area and Seamus has friends of all colors and ethnic groups. He has good friends who have parents from El Salvador, Nigeria, Latvia, and Korea.

He did understand something big was going on when Pete Seeger started singing "This Land is Our Land" at the concert at the Lincoln Memorial and Mommy and Daddy were both crying. (That was awesome, wasn't it?) He came in sat in my lap and said nothing, which is very difficult for a three year old.

One day we will talk about the significance of the first African-American president and what that means for all of us but for now, I want him to hold onto his innocence and to believe anyone truly can be what they want to be, including kids with CF. I can learn a lot from a three year old.

Dealing with questions

I was reading another CF mom's blog yesterday. Her 5 year old daughter has started asking questions about CF and why she has to do her treatments every day. The mom's not sure how to handle them.

I suggested this book, Little Brave Ones:For Children Who Battle Cystic Fibrosis.. It's written from a little girl's point of view who has CF. There are lots of pictures of her doing her daily routine as well as other kids with CF from all over the country, having treatments but also just being regular kids. Seamus loves it because he knows they are real kids just like him. We talk about how some kids, like Krista from the book and him, need to do certain things that others don't to stay healthy.

We also spend time surfing the blogs. There is a great community of CF families who blog. I used to think it was a great support for James and me but now I realize, Seamus can get a lot out of it too. He loves to see pictures of Samantha, Phoenix, Lil' Chris, Olivia, Seren and Dylan, and lots of others. So keep up with the pictures, CF bloggers. Seamus loves it!

Breath-ing

It's been a while since I've posted because we've been very busy at our house. We had a nice New Year's, not very eventful, and then on Saturday, we had a big housewarming party to celebrate the new addition to our house finally being done! I'll post more about those later, with pix, but I wanted to write a quick post while yesterday was still fresh in my memory.

The last couple days have been rough with Seamus' GI issues. His DIOS symptoms (Distal Intestinal Obstruction Syndrome) are back again even after spending a night in the hospital three weeks ago for a clean out. Even though he has not been feeling well, we needed to get out of the house. We decided to go on an adventure yesterday to a local nature preserve that has lots of trails where he could ride his scooter.

It was a short car ride but he was very tired by the time we got there. After riding his scooter for about 5 minutes, he was exhausted so I started carrying it. I noticed he started to lag behind so I said, "Are you too tired?" and he responded, "No, I'm just happy."

The air felt really good so I showed him how to take a deep breath through his nose and let it out with a deep exhale through his mouth. He liked the feeling of the cold air so he repeated it over and over saying "The fresh air is nice. I'm breath-ing."

As I watched my beautiful boy, I literally lost my breath knowing I could never take this simple act for granted. "Breathe, my love, breathe."

Tall tales

On the one hand, I feel bad about lying to my son, but on the other hand, boy I wish I had thought of this before.

With Christmas coming, Seamus has started seeing Santa all over on tv, in stores, etc and it has really peaked his curiosity. Yesterday we looked at the toy catalog and talked about how Santa gives presents to good boys and girls. He's not my baby anymore, he kept picking out "bigger boy" (he's a big boy, the older kids are bigger boys) toys like Spiderman and Ironman stuff.

At first this struck him as very cool, free presents, but as the day wore on it started to concern him a little more. Every so often, he'll make a comment like "So, bad boys and girls don't get any presents?" or "How does Santa know if you're being bad?"

I expect things to be pretty tame around our house between now and Dec 25th.

We win!

Conversation Tuesday night:

"Do I win if Barack Obama wins?"
"Yes, Sweetie, we all win."
"Does Spiderman win if Barack Obama wins?"
"Yes"
"Does Captain America win if Barack Obama wins?"
"Yes, Honey, we all win if Barack Obama wins."

He paused...
"How about Spidergirl?"

I just found out that Seamus' teacher, Miss Terri, lost her son yesterday. He was just a teenager with several health problems who apparently had an asthma attack and died. I can't even imagine what she's going through. It makes me realize how very, very, very lucky I am and I want to run home and hug my baby right now.

Tomorrow, he has a CF appointment. I think he's starting to get another cold so we'll see what Dr P says about nursery school.

BTW, thumbs down on Chihuahua from me but big thumbs up from Ga and Seamus.

Goodbye Pa

Seamus' grandfather, who he called Pa, died yesterday. Seamus loved him very much and is going to miss him terribly. Pa and Seamus had a special relationship. Even when Pa was at his sickest, Seamus could make him smile with his high fives and silly questions.

Pa had been sick for a very long time with cancer. In October 2007, Pa and Ga, moved down to MD from Rochester NY to be with us. While we have been building an addition on our house for them, they have been living in a temporary apartment. Twice a week, they baby-sit Seamus and lately he hasn't been able to play with Pa very much. Seamus understood he was sick and had to go to the hospital last week.

Pa was in hospice care where my mom and I stayed with him and yesterday James and Seamus stopped to see us. It just happened to be right after Pa passed away. I was afraid I wouldn't know how to explain Pa's death to Seamus but before I had a chance to figure it out, he asked me "Where's Pa, where's Pa?"

"Pa's in heaven now with the angels, honey, and he isn't sick anymore."

"He's not?" The idea of Pa being well really seemed to make him happy.

But later when he saw that Ga was sad, he seemed confused. I told him she missed Pa and he said "But Pa is in the hospital". We told him again about Pa being in heaven and this time he said "I'm frustrated".

I'm worried because Seamus knows that he gets sick and has to go to the hospital often, just like Pa. I don't want him to associate going to the hospital with going to heaven.

Serious talk

"Mommy, why do I have this?" That's what Seamus asked me pointing to his stomach Saturday night as I was setting up his feeding pump. It took me by surprise because he asked in such a serious way and it was the first time he seemed to know something was wrong with him. We talk about his "boo boo" in his tummy all the time but he always seemed to just accept it. We also read a book about kids with CF and he knows he is like them but of course, he doesn't understand what CF means.

On Friday, we went to Sesame Place again and he's old enough now to notice that none of the other kids have a hole in their stomach with a piece of plastic sticking out. And the other kids definitely noticed too. I was hoping we had a few years before the tough questions started. I always tell him the truth but I don't want to scare him.

Ga and Pa went with us on our trip. We stayed the night in a nice hotel which Seamus thought was just great because he got to sleep in the big comfy bed with Mommy and Daddy. Unfortunately, Pa felt too sick to go into the park so they ended up sitting in the car all day. They really wanted to spend the day with Seamus but at least we got to share two wonderful meals together.

We had a nice Father's Day. We started out at a yummy brunch where Seamus got to eat doughnuts (it's hard to find dairy free). Then we went to the cemetery to visit James' parents. Seamus has seen pictures of them but he is still confused. We told him we were going to see their grave and that they were in heaven in the sky. He thought that sounded great:

"I want to be up there too".

"No, Honey, they died and that's why they're up there."

"I want to die too."

"No, Sweetie, it's not your time yet but we will be going up in the sky when we fly in the plane to Chicago next month."

The rest of the day he kept insisting Grandma and Grandpa were in Chicago and we were going on a trip to see them.

Marrow Donor Program

For Mother's Day, the National Marrow Donor's Program is waiving the fee to join the registry. Please consider joining and saving a life.

http://www.marrow.org/HELP/Events/Thanks_Mom/index.html


Thanks