Blog to a book

I am officially starting my blog-to-a-book phase. I downloaded blurb some time ago to complete my mother's 50th birthday present and have been dragging my feet ever since..... I know. SURPRISE! My goal was to do it after I had had my blog for a year, but since I am 5 months behind that deadline, I will have to find a new one.

I am not truly sure I want to embark on this endeavor. Who would ever want to read it anyway? Maybe my kids. Maybe someone who has felt some loss, either similar or not, to mine. I don't know. But I need it. I need it for my personal history. To know that I have come so far in this journey of losing a child. Of having another one brought into my home. Of life after loss.

However, it will be emotional. I was perusing through the titles of blogs past and all sorts of emotions have been poured out of my heart and soul. I don't know if I can do this. I don't know if I can go back. I don't know if I can add what I didn't say. But I will. If anything, I can do it for that sweet little boy who melted my heart for the short time he was here on this earth. I love him. I miss him. I hope that reliving the last year will make me stronger... and not fall apart. Although I am sure that will happen too. Wish me luck!!! I will let you know how it goes.

And so begins another 'project.'

Back in the Day

Last week during a lesson in church a comment was made such as follows: I am glad that we don't live back in the pioneer times because babies died all the time....

Interesting comment coming from someone who has not lost a child. Just to make a point, might I add something? Just because we don't live in the "pioneer" times does not mean that tragedies and devastation does not happen.

All around us people are losing their houses (granted under different circumstances the pioneers lost their homes to fire, being driven from them, etc), losing babies (granted technology has decreased this number over time, but they still die, just maybe differently than they did back in the day).

The losing babies really holds a place in my heart because I am surrounded by mothers who have lost their babies or children. I also work in such a place where it is not uncommon to lose a baby from any number of causes.

So for the comment to be about babies just don't die all the time anymore, I just don't think that I can even come close to agreeing with it. Case in point: 15 months ago (has it really been that long?) there were 3 of us who started an "angel blog."

There are now over 100 members. Those are only from AZ and UT.... not that we exclude, that is just the majority of where our numbers come from. SERIOUSLY? That is ONLY the ones we KNOW about.

So just in case you were wondering what I thought :) there it is.

I also have something else to share. It was given at a friend's baby's funeral. He fought a good fight in his short little 6 months. He was a gift to all who were touched by him and his story. My heart is broken for that mother and father at this time. I am grateful that I am 15 months out. The pain isn't nearly so tangible as it used to be, although it is still there.

Here is the poem that was read. I was literally in sobs. I know the people around me were wondering what my problem was, after all, it wasn't my baby's funeral... but it may as well have been. So go and grab a box of tissues, because this one is a tear jerker.

Guess What Mommy & Daddy?
Guess what mommy & daddy,
Heaven is great.
Just like you said,
There's not much longer to wait.
Guess what mommy & daddy,
I have a guardian angel who comes at night.
I told him I wanted to go,
But the times not right.
Guess what mommy & daddy,
My angel came this morning.
While you were still in bed,
He came with a warning.
Guess what mommy & daddy,
When you were finally out of sight,
I told my angel,
The time is just right.
Guess what mommy & daddy,
When you still didn't know I was gone,
My angel put his hand in mine,
And I was no longer sick, I felt so happy & fine.
Guess what mommy & daddy,
When the hospital called, I saw you crying from above.
I saw daddy & how scared he was,
And I knew how much that I was loved.
Guess what mommy & daddy,
On the way to the hospital I heard you pray,
Don't take him, I'm not ready yet
I know you don't want God to take me away.
Guess what mommy & daddy,
I saw you walk into the Hospital, and ask is he gone.
I saw the look on your face when the nurse said yes!
It looked like you'd never go on.
Guess what mommy & daddy,
I seen you holding me tight.
I kissed you good-bye with my love,
And tried to tell you that I was alright.
Guess what mommy & daddy,
There's no more pain,
You can go on with your life,
And not feel so drained.
Guess what mommy & daddy,
I'll watch you all your days through.
And be like your guardian angel,
Just because, I LOVE YOU!!

G.R.U.M.P.Y.

Ever have those days? Where you are just G.R.U.M.P.Y.? I know. You don't. Everyday is beautiful, kids are wonderful, life is carefree. Right? I know.

Well I have had some SERIOUSLY grumpy days!!!! It can't best be described with Ella-fa-mumps who had the grumps! Have you read it? If not, you should. Because as she puts it, it is NO fun to be down in the dumps having the grumps. But the truth it. Well I have a REALLY bad case of the grumps.

I am not even sure what to attribute it to. Except... nothing. I have a great family. Great friends. And yet, I couldn't pull myself out of it for about a week. I was rude, unkind, intolerable (i know. hard to believe) (am I really airing out all the dirty laundry? yep!). But I am real. I am honest.

Life isn't always SUPER fun. It isn't always easy. It isn't always carefree either. I think lately I have been grumpy because that is the emotion I feel when I miss my baby Daxton. I have been extremely busy the last few weeks (you would think with two less kids at home it would slow down..... NOPE) and haven't had time to "myself" if you will. I know. Selfish. But what can I say. It's the truth.

I have been going to bed EARLY. Ya. EARLY. Some might say 9 or 10 is early. No people. I am talking 7. 8. Then sleeping in to like 8. 9. PROBLEM!!!!! As I was lazily crawling out of bed NOT so much ready to face another day, I had the distinct thought, "you know, you aren't going to feel any better acting this way." Ok those weren't the exact words, but it is the best I can do.

You would have thought that would be kick in the butt enough for me, but nope, not really. Took a few days to sink in. Needless to say, I am out of the "grumps" for now. So hopefully while I was in my SERIOUS case of the grumps I didn't hurt yer feel bads tooooooooooo bad. :(.

Last year of 20s

I can't believe I am announcing how OLD (or young) I am......... depending on how old or young YOU are. :) Well folks. This is the last year of the Roaring 20s. They have been for the most part kind to me. Here is a quick summary of the good, the bad, and the ugly:

20: married to the MAN of my DREAMS!!!

21: Had my first baby, Savannah, worked full time, went to school full time

22: Doug graduated from BYU, and we made the BIG move to TEXAS

23: Mikenna was born

24: Moved back to AZ!!!! YAY, started school, all my lovely SUPER fun nursing pre-reqs

25: Ran a marathon (26.2 miles, just in case you are confused) and several halfs(that was a GOOD year. I was SUPER fit and didn't even know it)

26: Started Nursing school and met some SUPER DUPER AWESOME peeps

27: Graduated from Nursing school, Daxton was born YAY our first boy

28: My baby Daxton was taken from my arms, and a little angel began to heal a broken heart in the form of my Kisserbella

29: Well, we will just have to see what this year brings

I met a lady today at the store who had 2 twins at 25 weeks and then found out she had Ovarian cancer and would not be able to have any more children as a result of a hysterectomy. And her reply was, "God has been good to me."

I hope that one day again, I will be able to look back and say "God has been good to me."

Today I went to breakfast with my fam. Yummylicious. Then on to do some shopping for some items I have been wanting to put into my household. Then to look at some dresses for my brother in laws wedding.

As i was shopping around I realized that I am SO out of style it isn't even funny. I don't know if you all read "unfrump my mom" but seriously!!!!! That was me today. If you hear about a crazy lady in a white shirt, black pants, pushing a baby, looking like she just rolled out of bed. Yep. That was me.

My Car

I love my car. Well it isn't exactly a "car" per se. It is an SUV. It is a GMC YUKON. And I LOVE IT. There are many things I like about it. Like the folding up seats to make room in the back. The fact that when I open the door to put the kids in the car seat it is eye level and I don't have to bend over to put the seats in and out. I love the loud speakers, the big tires (they aren't anything special), that I sit up high, that if I were to get in a wreck, likely I would come out better than the other guy.... (case in point, when I backed into my little car.... not a scratch on the big car, but I left a really good mark on the little one)

I didn't notice how many people drove a GMC YUKON. I see my car everywhere. On the freeway, on the main road, at the grocery store, in the parking lots, some even in my neighborhood. It is crazy. Now there are many makes, models, colors, upgrades, leather or not, dvd or gps, and different people that drive them, families, single people, etc... but the fact of the matter is that they are still a GMC YUKON.

Crazy how that when you are driving the same car as the person next to you, you didn't even realize that they were driving the same car when you were not.... I don't know if that makes sense, but you don't realize others are driving a certain car until you are driving that same car? Are you totally confused? Because I think I am talking in circles, which I probably am :)

Well I drive a different car.... you know the one where the mother loses her baby? Yep. That is the one. It is amazing actually how many people are actually driving this same car. Lets call it "loss" or "grief."

Did you know that I am part of an "angel mom" blog? Last year we started it around mid June. It started with 3 members. We are now up to 95. 95 people. I can't even believe it. And that number my friends is only those we know about or who have asked to be a part. Doesn't that make your heart sick? At least 95 people this year or in the last 5 years lets say have lost a child about the age of 5 or below. It makes MY heart sick. Literally.

I don't even know what to say... except there is another angel in heaven today. Another little brave warrior called to serve a mission away from this earth. It makes my heart sick. It makes my heart hurt. Literally. Please say a prayer for this sweet family who has fought a good fight and won a brave battle.

Time

Some say time heals all things.

Some say absence makes the heart grow fonder.

I say that time separates me and my little guy. Time. From now until then. That is what separates us.

I know I will see him again. I know I will be able to raise him, but for now time stands in the middle. Just time.

Sometimes I wonder what it would be like it I had Daxton and Isabella BOTH. I think I would be crazy having a toddler and a baby under foot, but I think I would be able to do it.

I am sure it would be hard, but I think it is harder to NOT have him. It is harder to look at Isabella and know that she has an older brother that should have been there to watch over her and protect her.

I used to wonder what a big brother would have been like. Now I wonder what a big brother for Isabella would have been like. Alas, although we cannot see him with our eyes, we can feel him with our hearts. We know that he is watching over us in Heaven, likely better than he could have watched over us on earth, but still.... I must be selfish :).

I do look at each of my children differently. I love them more. Appreciate them more. Not that I didn't used to, but now I know how easily they can be taken away. And that is not easily forgotten.

And so it is. This thing called Time. Separating us.

Oh Cute.... You have 3 girls

OK seriously. I know my girls are cute.

Kisserbella: She has a magnetic personality. Seriously. We can't go ANYWHERE without someone stopping to say hi to her, touch her, flirt with her. Seriously. We are frequent visitors of Costco and we always see the same manage and she is always making googley eyes at him. Women respond to her in the same way. She has the best smile that just takes over her entire being. She just has a glow. It is like she is telling you a story through her blue eyes and infectious smile. She can say a thousand words without saying a thing. I think she knows more than I. I truly believe that she can see Daxton, that they carry on conversations, and that my friends, is why she is so enchanting and irresistible

Bikenna: Well who wouldn't follow her around. She is my big helper. She unloaded all the groceries and "payed" them at the grocery store. ALL OF THEM. Seriously. I know. Long gone is the little girl. She is my big Kenna. I can't believe it. She is the mother of us all. She keeps order to our home.

Sawannah: Must say "hi" to EVERYONE. I mean everyone. She knows their name, first and last by the way, what they are doing, how many kids they have, if they have a dog, and where they are going. All this within minutes. She is friendly, nosy, and loves to meet new people.

So we go to the grocery store with all the personalities balled into one cart. Kisserbella in the front (of course), Mikenna driving the car (you know the obnoxious carts with the cars that take up most of the isle, turn all over, have no control, and the kids fight over who is going to sit where? Yes that is the one), and Savannah holding onto the cart (with the threat that if she lets go she is going straight into the cart.

Savannah was filling up the car with gas, loading it with groceries, and just plain being the runner girl for Mikenna (sound familiar?), Mikenna ordering Savannah around to get her groceries, put gas in her car, taking her order, etc. All the while Iserbella is in the cart making googley eyes at EVERYONE!!! I am not kidding. And then there is me. From the outside looking in: 1 mom, 3 girls. Going crazy shopping. Some might think it was chaotic, but the girls were having a ball. They like nothing more than to "pay." (play store with scanner and all, which by the way we have two of).

No one is more excited to go to the store and "pay" than my two girls and no one was more excited when they came out with the self checkout than them either. It is like a dream! We went up and down the isle, me loading up my cart, and Savannah filling up the space in the car where Mikenna was sitting with MY groceries. Hilarious.

Then we get to the checkout stand where I meet a long time family friend whom I haven't seen for years. He thinketh I have time to talk... all the while Mikenna has talked me into using the self checkout (I only concede because the regular checkstands have at least 10 customers in line with 2 full carts each and lets face it, I just don't have that much patience) Savannah has talked the sales lady into emptying our groceries into her hands, which she then places on the "moving thing" so Mikenna can scan "pay" the groceries, Iserbella is making googley eyes and I am just praying that I don't end up buying everything twice. Maybe it was because I had 2 hours of sleep after working all night, but I just didn't even care!!!! And if you know me, being uptight is not an uncommon occasion.

So we finally finish our little assemble line, the friend eventually lets me get back to my "checkers," and we are ready to pay. Savannah wants money to come out (change: but seriously when was the last time you paid cash and got change back) and Mikenna has called dibs on the grocery receipt (I have to tell Savannah that the coupons that printed out are also the receipt.... but alas, she is too smart, luckily she is side tracked easily :)) and I have to show my license to the real checker lady.

She drops it into a hole. A deep dark hole at that. SERIOUSLY!!!!! SERIOUSLY!!!!! HAS SHE NOT WATCHED ME THE LAST 30 minutes????? ER!!!!! FOR REALS!!!!!!!! I can't even believe it. Luckily, as aforementioned I have only had 2 hours of sleep and could really care less (except that my spending habits will be haulted much to my dismay, but not my husbands :)) SO I do my best, remain patient and eventually pry my credit card from the deep dark hole.

And so ends the trip to the store.

The only problem is the comment 3 times no less "oh cute... you have 3 girls" the last one added "and no boys." OUCH. I know I have 3 cute girls, but it doesn't make up for one boy I don't have..... Today I missed him. A.L.O.T.

Savannah and PWS: the horrible, honest to goodness truth

Some of you have asked about Savannah.... well here ya go :)

Savannah was born on November 1. I was 21 years old. VERY young by most standards. Ok all standards, but that is old compared to the babies I take care of. She was initially diagnosed with Russell Silver Syndrome. There are many traits and characteristics and I will only list those of Savannah. She was tiny. They call it IUGR (intrauterine growth retardation). They told me it was nothing that I did. That was comforting. She has her left side shorter (and smaller) than the right. You can see the physical mostly. She has a shoe lift about 9cm and brace on her left ankle to keep her from falling and breaking it. She has low muscle tone and tires easily (you would NEVER know this if you have seen her in 'action.'

She learned to roll over at 9 months, sit up at 12 months, stand at 2 years, and walk with a walker at 3. She shed the walker at 4.5 years old and has been moving EVER since. She had her first surgery when she was 6 months old. And has since had 3 others.

When she was about 4 years old, she was diagnosed with Prader Willi Syndrome. It is the UNCONTROLLABLE UNSATIABLE desire to eat. There are other characteristics, but this is the main one. Not only are they ALWAYS hungry, but they burn less calories because of their low muscle tone. So NOT only is she on a limited diet, but she gets 70% the calories that other children her age get. Sounds fair right? One might think that it would behoove someone like Savannah to hit the nearest buffet and load up. Truth is, PWS children and adults have been known to eat themselves to death. Literally. Their hearts, guts, and overall body just can't take it.

Typically it is late diagnosed and by that time the kids are too old and too overweight. Not that it can't be fixed but it is VERY hard. Trust me I did it and it was torture for us all and she was only 4.

What does this mean for us? We lock our pantries, my mom, my aunt, me. There were times when we would wake up in the middle of the night and find her scooping ice cream, cool whip, popsicles, anything she could find. She didn't even realize what she was doing until we found her, but she was shoveling food in like she would never see another bite. This sets us back LOADS of calories when she does this because I have to make up for it by decreasing her already LOW calorie diet.

I have gates up in my hallway to my bedroom and from their bedroom, that way they can only come into my bedroom. I had to do this because I would find her doing random impulsive things (very common. the impulsions for PWS) like emptying ALL my lotion (really it was like 10) onto the bathroom floor. Opening all the toilet paper (from costco) and then unraveling it all over the floor, painting my bathroom walls with nail polish, and oh did I mention buzzing her hair? And she was 6.5 years old when she did all this.

This is all to be blamed on the PWS. Really. She isn't being 'naughty' per se, it is more the uncontrollable impulsiveness and not enough will to stop. When she is caught, she feels terrible, but sometimes she just can't stop. This is the maddening part. I can't get TOO mad at her, you know like slap her silly or yell because ten minutes from now, she isn't going to remember what you are mad about.

Back to the food. There can't be one morsel ANYWHERE, gum, candy, crumbs, food. ANYWHERE. She will sniff it out, find it, and eat it. No exceptions. I don't know how she does it. So all food is in pantry and fridge under lock and key. NO EXCEPTIONS. After each meal, the food is cleaned up, dishes done (because she will see if there is anything in the sink) within minutes of finishing. There is no food in any bedrooms of any house she visits regularly. We have certain snack times and meal times and if there is any wavering, the day is shot to you know where.

Thing is, Savannah is NEVER full. Despite the large plates of fruits, veggies, low carb items that I feed her. NO amount of food is enough. She is NEVER full. Someday this will be a big problem for me. Some PWS kids are not uncommonly found sneaking out the window to run to the local grocer and get some food. It is not uncommon they will do favors for people in exchange for food. I have to know where Savannah is at ALL times. Not a minute goes by I don't know exactly where she is and exactly what she is doing. Did I mention that NO amount of food will fill her up? NO AMOUNT. She goes to school 'hungry,' she goes to bed 'hungry,' she leaves the table 'hungry.' ALWAYS. She always will. It is the fact of her life.

It is the most horrible, awful way to live life. I have been hungry and it sucks. To feel that way all the time because me brain is broken in that area? I just don't know if I could bare it. One might ask is the appetite suppressants work or if there is some special "yoga" to do to decrease hunger. NOPE. NOTHING. The part in the brain that says you are full is broke. BROKEN. Someday (hopefully never) she will have to be put in a home where PWS adults live. Where they lock all food away. Where they have to lock all the doors and windows. Just to keep them safe. I hope it doesn't come to this. But one day it might.

Life: what a ride

I can't believe I have a kindergartener!!!! That makes me OLD. But what really makes me old is that I have a second grader. The first day of school went well. The kids met their teachers the other night and LOVED them. I was nervous for Mikenna, new school, new class, new friends, new bus. But Savannah took care of her. She sat with her on the bus. She said "hi" to her at lunch. She gave her a hug at recess. She was the big sister today. It. was. awesome. She doesn't always get that role.

Babies grow up way to fast. I hold Isabella and kiss her and cherish her. I spoil her rotten. I carry her almost anywhere. She is almost attached to my hip. When I drop her off at the gym, I have a hard time leaving her there for an hour. Seriously. I know.

I don't take my precious little gems of girls for granted either. I am grateful for every successful swimming adventure. I am grateful for every morning we all wake up. I am grateful that I have hair to do and clothes to buy (and wash) for my little ones. I am grateful for their health (mostly). I am grateful for each time I leave them and come home to their smiling faces. I am grateful every time I see Isabella's smile, or laugh, or cry. Nothing is missed (ok. maybe.)

I am grateful for their kisses at night. I am grateful that I can hear them play or fight or ignore each other. I am grateful that when they get off the bus they have been safe. I am grateful for every car ride that goes without incident. I am grateful that when I get home from work, I can see Isabella's pinchable bum and kissable cheeks awaiting my arrival.

I just can't believe they are getting so big. And that I have had them all this long. Sometimes I have to look around and realize that there are families who have all of their children. Most of the time this is a conscious effort. Just like when Mikenna was born, I thought to myself, babies suck? on a boob? on a bottle? They actually eat? They don't eat from a tube? They don't blow up like balloons because the doctors tell their mothers to keep feeding them? It was and continues to be a whole new experience. Life.

It is always a new adventure. Every day. And for that, I am grateful.

Little Girls

I had a funny thought the other day at church. I always watch a particular family with 3 little girls. Their dad is so loving and patient. You can see him covered in glitter (which he loves by the way), clipping fingernails, soothing a crying princess and on and on. I looked at him and thought. Oh sad, he has all girls and no boys. And then I thought of Doug. :) He has all girls too. It was a bittersweet revelation. I hadn't thought of that before then.

There is nothing like little girls running all around. Their giggling. Their imaginations. Their personalities all a little bit of me. It is like seeing myself in the mirror every. single. moment. I know. Scary. Here are a few pics of all the mini me's running around out little house.

I know there are too many pics of Kisserbella, but seriously if you had a baby as kissable as her, you would TOTALLY have TONS of pics too :)

Debriefing

Every once in awhile we lose a baby in the NICU. Actually they usually happen in threes. Most of the time I am ok. They usually aren't my patient and I am usually not there when it happens. And not that ANY mother should EVER lose their child, some babies are just too early to really survive. Really.

However, every once in awhile one comes in and will just tear up your heart and rip it to shreds. First time moms. Second time moms. Families with a mom AND a dad (yes it is rare that there are both). It is truly heartbreaking. It isn't supposed to happen to the "good" families who will take their babies home and give them a "home." Who will love their baby and provide a good home. It just isn't.

These moms don't know that when they wake up in the morning they will be losing their baby. They will likely feel them kick, move around, flip circles. They will likely have been up all night because their baby was moving to much. They have no idea the grief, sorrow, and physical pain they are about to feel. My heart truly bleeds for these mothers.

I wish it weren't so. I wish that I had all the answers. I wish that I could take each of these moms in my arms and tell them that they are loved, that their baby is in a "better" place, that it is God's will. But how can I? Right now they are in the darkness and despair of losing a child. I don't know it is my place. (as a nurse) I don't know if they will be receptive to what I have to say. I don't know if they will even hear me.

This is why I didn't sleep very good today. We lost one last night. And my heart aches for that mother. My co worker told me that if I lost sleep every night that a mother lost a baby, I would be one tired girl. She is right. I know. But still. It hurts. Please pray for this mom and so many others that continually lose their babies to most tragic circumstances.

PS go here for Daxton's story
http://www.azcentral.com/12news/news/articles/2009/08/03/20090803B12Filler0804.html

In the news

We were in the NEWS!!!! It was pretty cool. I was going to tell you all but I thought I would surprise you and put a link on here... well as it goes it wasn't online, only in the newspaper. It was on Saturday, in the Mesa Republic, Gilbert Republic, and Tempe Republic. When I figure out how to upload PDF files I will post it... any pointers?

LOVES!!!