SuperNats

Last week Natalie had several nights when she was nauseated in the evening after dinner and/or her mirilax.  It has been happening on and off over the last several months.  In fact over the last several months she has even vomited twice out of the blue when she is not at all sick--both times were about 30 minutes after her mirilax and were at VERY bad times.  Once was in the car with literally five seconds warning and once was 15 minutes after school started in the gym ALL over her backpack (everything inside was ruined)!!  Both times she didn't feel sick ahead of time until just a few seconds before she got sick--but both mornings she woke up NOT at all hungry.  David even commented to me last week how surprised he is at how poorly she seems to be tolerating her mirilax lately.  Too bad that poor tummy of hers can't just work right all the time. 

We saw the GI doctor last week and he told me he thought Natalie might be old enough to try biofeedback.  It is something we have talked about before but thought she was too young for.  We want to make sure she knows how to correctly use all of her muscles.  Her doctor asked Natalie if she would be ok trying it- this is how he described it- we put a balloon in your bottom and blow it up and then they can tell you if you are pushing it out correctly and using the right muscles.  To my surprise Natalie quickly agreed.  Later when we were talking about it with David she told me she didn't hear the part of where the balloon went!!  Then she told me she was just kidding, she did----and if it helped her to get rid of her troubles she thought it would be WELL worth it!!!  That is quite a statement!!!!  I was shocked!!  I know she wished she didn't struggle with those things still.  What a trooper she has always been. 

So, one of the nights she was nauseated last week we had her sitting on the couch with us holding a bowl.  We had given her some zofran but didn't want to make her lay down and go to bed until her tummy felt better--no one wanted her to get sick.  It was past her bedtime and Stephen had fallen asleep next to all of us on the couch.  Before she started to feel sick she had noticed that the movie "Superman Returns" was on and begged to watch it.  Right after she turned two she saw this movie for the first time and LOVED it- Superman became her HERO and a huge part of her life.  As our poor girl was sitting with us feeling so sick- it happened to be the part of the movie when Lex Luther hurts Superman with the Krypton.  Just like when she was two and three--this part still made her SO nervous and she hated and loved to watch it at the same time. 

Maybe it was because of the familiar feeling of Natalie not feeling well or maybe it was because the little guy was asleep and it was just the three of us like it was back in those days--but for whatever reason I kept thinking of Natalie watching Superman back then when she was going through chemo.  I soon realized that David was thinking the same thing--he started asking Natalie "how does Superman fall??"" And when she told him she didn't feel well he answered for her and did the action that our precious two year old used to do.  And then David kept quoting the other parts of Natalie's famous Superman Story--"he was so strong he broke the needle"  and "he was so strong he broke the machine" and "they didn't know if he was going to live or die."  As David said these phrases because little Natalie felt sick and maybe also because she is too much of a big girl--instead of hearing David's voice I almost heaard my little two year old Natalie's voice and the precious, precious way she pronounced all those things.  Seeing how much the moment meant to David as well was so special- the two of us remembering something that might seem simple and silly but brought us all SO much happiness at a time in our lives when we needed and celebrated anything good and happy. 

The first day I helped Natalie make up the Superman story was a day when we were driving in the car home from clinic or maybe the hospital and she was hurting like she was SO often back then.  She needed some distraction to get through the ride home and so I brought up Superman--she had fallen madly in love with the movie by then and the first time she saw it she made up this thing with her hand and told us Superman went "zoom through the sky!!!"  --and so in the car that day we made up the story together.  I still remember it- Lex Luther and his diabolical plan--the way she said it was beyond adorable.  And because she had a phenomenal memory- she remembered the story the EXACT way we made it up that first time.  After that she would tell the story over and over to everyone and anyone.  I still remember one day we went to the park in the spring when she was super bald and she told a group of strangers the story and they were so amazed at this tiny, cute little thing.  I remember her telling it to the lady who always did her weight and blood pressure and to her nurses and doctor.  She told it all the time.  It was SO SO special--and getting the reminder watching it with her again that night and seeing how much it meant to David too was a good reminder.  A reminder of our special Super Nats- who still is Super!!






Can you tell how much WE loved this???

Turning Seven

For the last three days; everytime I look out the window I seem to see a butterfly.  Even when I am driving I keep seeing them everywhere.  Yesterday I drove over to have lunch with David and I kept seeing them.  I was stopped at a stop sign and it almost seemed like time stood still for a moment as two butterflys seemed to perform a dance right before my eyes--almost like the amazing butterflys I saw in Key West.  Tonight I was eating dinner- there is a window right behind Natalie; the person across from me at the table--every time I glanced up there was another butterfly.  Then it would flutter away, but as soon as I looked up again I would see one again.  I'm not sure if there is a butterfly migration going on right now; but it seems so appropriate that on Natalie's birthday week I would see so many.  I think I have seen almost a hundred over the last three days--at first I didn't think much of it but then there were so many that even I noticed it. 

 I decorated Natalie's nursery with pink and purple butterflys.  I LOVED it.  To pass the time as I anxiously awaited her arrival, I spent time making fun butterfly themed items to decorate her room with.  I must have made a dozen little handmade items- items sprinkled with an excited Mommy's love. 

My pretty girl and her butterfly bed. 

It is hard to believe my Natalie is turning 7 tomorrow.  Honestly the time has flown by so fast and it seems like such a short time ago that she was an itty bitty thing lighting up our lives for the first time.  When Natalie was born it seemed like pure magic.  We were in heaven and SO in love with this precious girl that came straight from heaven to us.  Besides that head over heels feeling that all parents have, it seemed like there was just something about her.  Even from the start we sensed it.  She was an old soul from the beginning and she had that joyful personality that is her hallmark even as a tiny baby. 

Our first family picture after she was born. 

This little angel was spoiled right from the start- spoiled in the sense that we ALWAYS held her and doted on her constantly.  I am sure people who went to church with us will remember that we never put her down.  We were so ready for her when she came- we had been married for five years and dated for four years before that.  We were so excited to have her.  I have so much fondness when I think of all the amazing time we spent together those first two years of her life- besides the stress of her eating- she was happy, beautiful, and perfect. Life was so amazing watching her grow and having so much time to just dote on her.  It was a blessing because I knew her so well and being so in tune with her helped care for her in what was to come. 

 This was Natalie's first birthday- it was so much fun. 

 Happy Girl!!!

Running...

The look on her face in this picture is kind of like, 'really mom, another picture?'  Funny.  But I just had to take this picture of her.

Earlier that day David and I had attended what they called a curriculum night at her school.  There was also a "Dogs & Dads" event where all the kids brought their Dads to have a hotdog dinner with them and then they talked to the Dad's about their watchdog program.  While they were talking to the Dad's they invited all the kids to go out to the playground while some of the teachers and parents volunteered to watch them.  I wasn't really interested in listening to the watchdog presentation so I went outside to watch Natalie play and enjoy the beautiful afternoon.  My parents were in town visiting and Stephen had stayed behind to play with them.  It was one of those rare moments when I was just there to watch Natalie and had no distractions. 

Well something about it made it just become one of those moments.  Pure happiness, amazement, and intense gratitude all wrapped up in one emotional moment- watching her play on a playground with her peers.  The playground was VERY full, crowded, and joyfully noisy.  It was a scene I would picture from Sesame Street- everyone just playing.  She didn't see anyone that she knew, but that didn't stop her from joining right in and having a good time.  I watched her run from the play area to the back of a field where some kids were kicking a ball around.  I watched her run full speed with her long perfectly tanned beautiful legs and that fluffy skirt bouncing all around her as she ran--not a care in the world.  And she was sporting her newest edition survivor shirt.

Maybe it was that.  Maybe it was me seeing her ten minutes before having her typical tummy trouble on the playground that stopped her playing cold in its tracks--I can spot it a mile away--and went and got her up and inside.  How uterly happy I am that most days she works through it and can go right back to playing.  Of course I wish it wasn't a factor at all; but how can I complain?  She went right back to playing and wasn't even phased. 

Really I think it was watching those legs- those legs that couldn't walk for a time and for so long wouldn't have had the strength or endurance to run like that.  And being on a school playground was the other factor- I don't think I have ever seen her at recess at school.  That really hit me- in the back of my mind there were times that I wondered if she would make it to school.  It was such a milestone.  To see her playing--just a normal kid.  Beautiful and healthy.  Running....

Funny how it can still hit you out of the blue when you don't expect it.  I suppose I will spend my entire life being surprised by those little tender moments that suddenly overtake you--when you remember everything you have to be thankful for.  They happen less often- and even though it is sometimes also a  reminder of hard things, it is more of a sweetness; because when you remember those hard moments you have an intense happiness for little things in life that you might not particularly notice otherwise. 

The last year has been a very good thing for me.  I had the chance to talk to my Dad a little when he was here about how I felt emotionally about things with Natalie and the evolution of where I have come to.  I have changed a lot in my thinking over the last year and really feel good about it.  Maybe that is why it is easier for me to start writing a little- something that I have always wanted to do.  Maybe it appears backward looking to some for me to still think about Natalie's journey and want to go back and write things I remember; but for me it is not.  It has to do more with what I value and who I have always been.  Maybe one of these days I will write more about the changes in my thinking- but for now it is a little too personal.  But good to be able to put it in words and share it. 

Awesomeness

After Stephen had his friend birthday he was so excited that he began to plan out all of his parties to come.  "Mom, first I want a Three Amigos party (funny & random), then a Star Wars party, and then...."  He listed several others that I can't seem to remember at the moment.  Since then he has added more to the list, including a bugs bunny party.  It makes me laugh and TOTALLY reminds me of Natalie.  Each year at Halloween time she tells me the list of what she is going to be for the next ten years.  She has done that every year since she was three.  I love that they are alike in that. 

What I love even more about that is how it shows their excitement for life--they see that there are so many awesome things and it is hard to pick just one.  They want to experience it all--all of the awesomeness.  (I feel like Jack Black saying that:o)  They comfort themselves when they have to pick just one by making big plans for the future.  I identify in this way with them as well.  As a kid I felt this way about all the amazing things I knew I could be when I grew up.  How many amazing and exciting things are there to do in life?  Sometimes there are just too many things that seem SO awesome and interesting to discover.  One life time is probably not enough to experience it all. 

Stephen's birthday party wish list makes me smile and tempts me to start celebrating half birthdays or just have random little themed parties--just for fun.  Kind of like the "penguin party" we had last year with The Cousins!  I threw this little party just because I saw a cute cake and to celebrate how much my kiddos loved penguins.  It was so fun.  Isn't that what we should do in life--grab ahold of every good thing that comes along. 

That is one thing that kids have that just can't be beat--they have a special way of getting excited by the smallest things that seem so little and ordinary by the time we become grown ups.  We forget the magic and newness of it all and that is one thing that is so enchanting, fun, and light filling with kids...   I know that is a weird term--light filling; but I think that little kids come with huge spirits in tiny bodies and everything about them brings light and happiness.  That is what I felt each time I had a baby and everytime I focus on how wonderful and amazing my children are; that is what I see and feel. 

As a grown up going somewhere for dinner might be nice; it might even be a treat.  We might be happy and enjoy it; but do we ever get giddy about it and just plain excited?  As grownups, being around little kids lets us re-discover that magic and fun excitement of being a child.  We light up inside as we watch their faces light up and as we hear the anticipation and joy in their voices.  We get to remember in a way what it felt like when we were children; we re-discover it right along with them if we are open to it.  Is there anything more fun as a parent than watching your child experience something new and good in life? 

A little while back David & I were talking about how much we enjoy traveling with our kids.  Some people might prefer to travel just as a couple, especially for certain types of trips.  We were talking about how fun it is to take our kids to all kinds of places to discover it together.  Maybe we feel this way because we have been together so long.  David and I were together nine years (five of those married) before Natalie was born.  We had lots of time to enjoy each other and we know we will have lots of time after our kids grow up.  We just have a short little window of time with these cutie pies of ours--in just a few short years they will be all grown up.  David told me that when we were in Key West he was thinking about how amazing our kids are and how much fun they are to be with--he said he thinks these are probably the very best years.  He told me it occurred to him that maybe one reason people have more kids is that these years with young children really are so special, fun, and priceless.  That magic that they live with really is brought into our lives too as their parents. 

Just by being their parents we get to discover life in that "awesome mode" more often.  If we could just keep a little drop of that excitement and remember how many awesome things there are in life to discover--we don't have to stop just because we are grownups.  There is still a lifetime of awesomeness in front of us.  Sometimes we just have to make it--just like kids do.  It's all about attitude. 

May 2007 An Emotional Goodbye & Memories

Being in Utah on vacation reminded me of this trip we took to Utah four years ago.  This isn't the last trip we have taken to Utah, we went back two years ago as well.  But I suppose I thought of this trip more because it was such an emotional time for us- that always makes memories stick more.  Also, on this trip we did some of the things that we did four years ago that were very memorable to me...

As I rounded the corner up Grandma B's walkway, I saw that David had the kids standing on the porch alone ringing the doorbell just like he had Natalie do four years ago.  I LOVE this picture and thought of it right away.  Now I have two beauties to stand there in excited anticipation.  And oh the excitement when the door to Grandma's house opened.  I hope they will both always remember that feeling and Grandma's tears and hugs at seeing them.    

Going to the petting zoo at Thanksgiving Point this time reminded me of our trip there four years ago.  I LOVED that Natalie got a chance to feed this baby cow and I loved telling her about how I used to feed our cows Chuckie and Sid with bottles just like that--only I had to do it EVERY single morning and that wasn't always a picnic in the winter.  It was fun to share those memories with Stephen this time too and see how cute he was with the animals.   

One of my favorite stories I was able to tell them is how Chuckie and Sid would sometimes get so excited when they got their bottles that they would yank the nipple off and spill all the milk.  Even though it was kind of cute; I always hated when that happened because I would have to make another bottle and start over.  Some of my other fun memories of our cows was the time I was in the kitchen on the phone and one of our cows had gotten out and came right through the screen door and into the kitchen.  Cows are stubborn and he was a little bigger; I was trying to push him out before he went to the bathroom.  I was starting to panic because I didn't want a mess on the floor and I couldn't get him to move.  It is one of my funniest memories with our animals on our farm.  How fun to be able to share some of that with my kids. 

Isn't she precious?  She loved riding on the pony--I think this was her first pony ride ever!! 



Greeting and hugs and loves from her adoring fan club. 
Some things never change!



Becks!  We love you.  I don't think there could be a better, more suportive sister in law.  I have admired Becky since I met her as a teenager and my love and appreciation for her has only grown over the years.  There are some people who just seem to be your biggest cheerleader and supporter and Becky has been one of those people for us.  During the early days when Natalie was in the hospital she called almost every day to find out what was going on.  Besides our parents we didn't take the time to talk to many other people but she was always one of them. 


Can't believe how big they are ALL getting.  Look at little Melinda- a little Dora look a like.

Did I mention that we always find time to play games when we are with Becky?  Cute little Natalie checking things out while Auntie sets up a game.

Oh my goodness, I loved her "Elmo-Zoey Shoes."  Aren't we funny that we name the shoes around our house!!  These shoes were just about as special to me as her Blue Sparklies.  When she got home from the first nine weeks (almost consecutive) in the hospital- her shoes no longer fit.  She hadn't worn them because she refused to get out of bed much--so after we got home it was time for new shoes.  They HAD to be Elmo shoes since she had fallen IN LOVE with Sesame Street and especially Elmo her first week in the hospital.  Oh Elmo was SO special!!!!  I could write a whole post about Elmo memories!

This picture is in Grandma's backyard.  I love this one because it was probably the first time she had played outside very much since she got sick.  She had been to the park a few times but her legs had still been very weak and she couldn't walk well- not to mention the darn 'abdominal pain' that kept her from playing.  She was SO excited to be with her cousins and was having a good week, we were finally having a little better time with her tummy after some of the worst months with it.  I was SO SO SO happy to see her outside playing- it made me cry. 

Her shirt says, "I'm as precious as they come."  Hard to have a shirt with a truer statement. 

The other thing that made our trip to Utah two years ago so emotional is because we were there for my Grandfather's funeral.  My Grandparents had been staying down at my parent's house in Nevada dealing with some health things.  My parents had gone to Hawaii with some friends for the first time.  My two youngest brothers were still at home helping my Grandparents who were doing better by then.  My grandfather got up early one morning to go to the bathroom and had a massive stroke as he got up and fell to the floor.  My brothers woke to my Grandmother screaming for help.  Apparently my brother Justin, who is autistic, came in tried to get him up and ended up holding him the entire time until the ambulance came.  He hasn't been willing to go into that room since then.  My parents cut their trip short and rushed home.  David, Natalie, & I got in our car within an hour of hearing the news and actually beat my parents home. 

It was very emotional for us all.  Everyone came to say goodbye--my Grandfather was vocal about his thoughts and anyone who knew him knew that he did not want to be kept alive artificially.  My mother later told me how grateful she was that Natalie was there.  She told me how much Natalie's spirit and sweet personality lightened the mood.  Even though she often didn't feel well and was battling her own steroids, she could feel when others were sad and acted to try to make it better.  Not to mention that she was ADORABLE.  It was a bit stressful because two of my Mom's brothers were a little pulled away from the family and I think Natalie being there helped pull them in smoothly. 

I like this picture- Natalie is checking out Grandma's beads.  Natalie loved beads even back then.  All her gear is next to her--her blanket is an absolute must--she always needed it when she had tummy pain.  That was OFTEN so we always had to have it on hand.  It didn't have to be a certain blanket- just a blanket.  Her bumble bee bag was what we used to carry her medicines in--something to make it cute and fun.  That sweet bag was given to me by the first pediatric cancer patient I met after Natalie got diagnosed.  A sweet girl I will never forget even though I don't remember her name.  In this picture you can see the supplies of her bag out because she is in the middle of getting her IV zofran.  She had to be on zofran to keep from getting sick every six hours back then. 

I think this is the sweetest picture.  I love it.

In the picture where she is sitting playing with beads, you can tell she is doing ok.  This picture she isn't feeling as well.  You can kind of tell by her face if you are perceptive.  You can see she has climbed into her stroller so she can lean against something (she always had a way of propping and leaning her body that I guess helped her deal with the discomfort she felt).  She has her blanket now and it is pulled all the way up.  She also has her special, favorite baby doll.  She got this doll the Christmas right after she turned one.  Who knew she would end up looking like twins.  She used to take this baby doll to clinic with her and the nurses would comment that it was her "twin."  Funny, but she actually named this doll, "baby doll." 

I cropped this picture, and was amazed at how sweet this is once it was focused in on just her.  I feel a lot of emotion when I see this picture.  You can see her 'old soul' in her eyes. 

I went back to the hospital later after everyone had a chance to say their goodbyes to be there when they disconnected my Grandfather from life support.  I had never been so close to a person in the process of passing before.  I think we were all surprised when he breathed on his own after he was disconnected from life support.  It was difficult.  The decision was made for my Mother to take her Mother and Father back home so he could pass away there.  It was a four hour drive north.  We went back to my parents house thinking we would try to stay, knowing there would be a funeral soon and not sure exactly what to do with the limbo.  David needed to work and Natalie had clinic appointments to get chemo- but we hated to make the eight hour drive back and then back again.  It was hard on Natalie to travel--although she never complained or asked for breaks.  We could tell it made her body hurt though.  There was no way we were willing to fly with her immune system being so low either.

A sort of funny thing happened.  We ended up staying in the room my Grandmother had been staying in before.  After the stroke she stayed up near the hospital where Grabndpa was.  Grandma came to get her stuff and pack it up and being distraught, she gathered up Natalie's chemo and took it with her thinking it was her medication.  I remember kind of freaking out--David and I had decided early on that we would always be 100%- we never missed or forgot a dose--EVER!!!  It is hard for us to understand parents that did.  We never cheated on the 2 hour ban on eating before and after chemo either.  So it was a stress to be away from home without her chemo.  When we got home our oncologist got us a new prescription and joked that they knew they at least had ONE family who gave the at home chemo (apparently there are parents who don't do this). 

We did end up going home to wait while my Mother took care of her father on hospice care.  She has told me that those were the longest four days of her life.  It was hard and emotional for me and I wasn't there.  I can't imagine how it was for her. The funeral was a time to come together as a family and to get in a trip to Utah (we hadn't been there since before Natalie got sick) and spend time with David's family as well.  It was special having Natalie at my Grandmother's house (I lived in this house for four years as a teenager before my Grandparents moved there from Seattle).  So it was a neat chance to show Natalie where I lived and to spend time together.  My Grandmother's backyard made an impression on her- she still remembers it.  She only went there one other time for a few hours besides this trip. 

Audrey- the blondie personality!  This is David's niece.  She came and spent time with us because she didn't want to not be with Natalie. 

Sweet sleepy girl.

Love this!!!

So, I don't know if you can tell from this picture but I think some bordeom was setting in for men that might rather be watching sports than sitting around talking.  I LOVE, LOVE, LOVE this picture of David and my Dad goofing around and being silly.  I can't say how important it is to me that the two most important men in my life get along and respect each other so much.  David grew up without a Dad and has always loved and respected my Father. 

This is my Nat in Grandma's backyard.

I love this picture of Natalie and her cousin Daniel.  They are six months apart.  Both my sister and I were pregnant on this trip.  My sister was three weeks ahead of me and just about into the no travel time of her pregnancy.  I was surprised her doctor let her come.

On her knees from abdominal pain.  This picture reminds me of another moment on that trip that I didn't take a picture of but will always stick in my mind.  It was a moment of abdominal pain that broke my heart and devestated me for her.  It wasn't unusual, more of the same as always, but she was trying SO hard.  We went to eat at Thai' Village and the green grass outside the restraunt was SO beautiful and the weather was so perfect.  There was a wait and so we were waiting out there and all the kids were playing on the grass.  She was running, in her little semi-unstable way, I think it was the first time.  She was SO happy and thrilled to be playing with her cousins.  That was motivating her to run.  It was so wonderful for my heart and then she kept falling to her knees with that horrible pained looked and terrible body posturing that I can see a mile away and had come to hate so much--I hated seeing that.  That day more than ever.  It always hurt me to see her hurt- but when she was trying so hard and having so much fun- I hated to see it interrupted and the stark juxtaposition on her face: from joy to trying to endure (of course never a complaint).  That is something I will never forget.

Natalie in front of the cherry tree that she remembers even now!

Back to not feeling to well and needing to be held by Mommy.

I still remember people coming up during the viewing and patting Natalie's cute, little bald head.  Her steroids weren't making her feel well and being out of town while on steroids (especially after having recently finished the month long delayed intensification dex that was still in her system) was hard for her to deal with.  Stressors always made it harder for her to deal with the emotional effects of the steroids and I remember her not really liking people touching her head.  The steroids were always hard because they made our happy and sweet girl moody and made it so she wasn't the "people person" she had always been.  

I also remember how she was concerned about my reaction to seeing my Grandfather in the casket, I am pretty sure this is a shot of her comforting me.  She had such a great understanding and so much empathy.  Granndpa's funeral obviously had an impact on her because even now she will talk about it.  She talks about Duchess, Alexa, and Grandpa Hawks being in heaven. 



My grandfather was a veteran of the Korean War and had a full military salute at his funeral.  I know serving in the war had a great impact on him- I think he had difficult memories that he dealt with from it but also had interesting stories to tell.  He was an amazing man with more personality than three normal people.  He LOVED to talk (maybe that is where I get it from) and especially loved to talk to strangers.  He especially LOVED to tell stories and would tell them to anyone who would listen stories- often times these stories seemed to have questionable credibility but they were fun to listen too.  He and my Grandmother were high school sweet hearts and got married young, I know my Grandmother still misses him a lot.  I do too. 

After she sweetly put her rose on the casket and said goodbye, she decided she really did want to keep that rose after all and decided to take it back!  I will always remember that.