quilt square

In April, Intermountain Donor Services will be having their annual Family Recognition Ceremony- honoring Donors. Unfortunately- this year. We are invited.Makenzie's picture will be displayed in the slide show and we were asked to make a quilt square in honor of Makenzie to add to the Donor Remembrance Quilt.
I had no idea how I was going to do this- simply because I have NO crafty skills when it comes to sewing. I could have asked one of my talented sisters, mother or mother in law to help but I felt I needed to do this on my own for Makenzie. I wanted her to see how hard I would work to make sure she would have a perfect little square.
I am not a sewer, I don’t stitch, I can’t for the life of me even sew in a straight line. REALLY- I’m horrible but after several attempts I got the square sewn (not in a straight line but sewn)
Now to the stitching. I got great ideas from my family on what to do and I loved all the ideas but they were all out of my league. I didn’t think I could do any. So I had the idea to use buttons for balloons and stitch her initials. Again- I started and it was looking horrible. Thankfully sister A came over to save me. She told me I needed different thread and that she would get me the right stuff. So tonight- instead of going home to play with my daughter after work
(which I still imagine I’m going to do everyday),
I stitched her initials on a square to honor her for donating her little heart valves.I thought about her so much tonight.
In every stitch I made I remembered something about her.
I kept asking her if she liked what I did.
I keep praying that she thinks it cute and she feels honored to have it.
I have to turn it tomorrow but I’m a little nervous to part with it. I worked so hard and put so much of her into it that a part of me just wants to keep it.
I picked the colors out because they reminded me of her room.
I picked the boarder because those words describe her.
I picked the balloons for obvious reasons.
I did the stitching so it looked like sprinkles- that reminds me how sweet she is.
I made this for her.
...
Although, It will be nice to see it sewn next to all those other donor angel squares.
All those other angels Im sure she is dancing around with.

remember

** thanks for all your comments from my last post **

i walked into work this morning and got the worst feeling.
i stopped dead in my tracks and almost lost it right then.
i finally made it to my desk and sat there.
just stared at her picture.
i realized i didn't think about her all morning.
i woke up late and was rushing around-

the radio was on (which it never is)
i couldn't find anything to wear.
my mind was on everything else.

after i sat at my desk i was so mad at myself.
i had to sit there for a few minutes and picture

her fingers, her toes, her nose, her eyes...
i cant forget those things.
i cant forget feeling her.
i am so worried these memories will go away-
someday i wont remember her touch
i wont remember how her hair felt
what color her hair really was
that sparkle in her eyes.
those things that pictures cant capture.
why is it still so unbelievable that she is gone.
i still have to remind myself I'm not going home to her.

yesterday i caught myself thinking, i was going to go home early

because i didn't feel well and just rest on the couch with her.

i even imagined going to pick her up at the babysitters.

i imagined needing to make a bottle when i walked

in the door because it would be lunch time.
then i remembered.
she isn't here.
i stayed at work because whats the point.

i would have really been going home just to be with her.

since she isn't there- no sense in going home to stare at her pictures and cry.
i miss dressing her.
i miss buying her things.
i miss her.
i miss her.
i miss her.
i cant say it enough. i cant express how much it hurts.
i wish i could feel peace all the time.
i wish i could feel her all the time.
oh makenzie- i need you.

grief dance

when i started blogging- i started blog stalking. i loved reading about others lives. i would get ideas form the creative ones, i would laugh with the ones who talked about everyday life and i would get inspired by the ones that were inspiring. i started reading a blog about this sweet lady who lost her 1 yr old daughter. i was roughly 4 months pregnant when i found her blog. i was heart broken for her. as time when on and she wrote exclusively about her pain, her daughter, her heartache- i started to get a bit frustrated.
i kept thinking, life happens- why don't you start to move forward. of course its hard but life is still moving forward.
after i had makenzie i didn't have much time to read others blogs as much. i stopped reading hers. months have gone by. when kenzie was sick i started thinking back at those blogs i stalked- esp that particular one. just in the last week i found her blog again. i started reading back to when she lost her sweet little girl. i broke down. she is telling my story. she is saying everyone of my feelings. i almost punched myself in the face because of that thought i had almost a year ago- move forward?!.

ryan and i have had comments here and there from people saying in a nice way- its time to move forward.
i have heard remarks, comments or seen looks that make me feel guilty for feeling the way i feel, like i should be further along in this process.
for some people it takes going through a trial to actually open your mind about something.
i guess I'm learning the hard way. my daughter has opened my eyes in an unbelievable way.
her birth
her life
her death
I'm less judgemental, i don't assume i know what your going through, i don't assume i would do something different in your situation, i love more, i work harder, my priorities changed, my needs have lessened.
my makenzie changed my world. she changed the way i see everything.
i look back at those amazing months i had with her.
i am still in disbelief that in that short amount of time-
she changed
every
part
of
me.
i know so many others have changed because of makenzie. i hope more follow her amazing example. i will forever learn from her.

- to this amazing mother who lost her sweet girl-
I'm sorry. I am so sorry I even had the thought you should move forward- I should have seen that you were. You are. Everyday is another day you don't have your little girl. Everyday is another day she will not see. How can you do anything more than talk about her. She is everywhere. She is in that brown box in the corner, she is in that glass of milk, she is in everything that's good. I'm aching for you. i am walking in your shoes right now and seeing those dark places to. Its scary, its overwhelming, its exhausting. Trying to just live. All I have to say to myself a year ago and to anyone else who tells us to -MOVE FORWARD- screw you.

i will mourn for the rest of my life. i will for the rest of my life be without her.
i will not see her grow.
when your sending your child to school- ill be sending balloons.
when your child gets married- ill be imagining her dancing in a white dress.
when your child has their own children- ill day dream about the women she would have been.

***i read this on someone elses blog who lost their child and its everything i feel.***

Grief Dance
There is a lot of pressure that comes with grieving.
Every day, we get watched, observed, sized up.
People are constantly looking to us to set the tone. We can hear them holding their breath, waiting for us to smile, or laugh, or cry.
We are also holding our breath, waiting to see how people will react to us.
If we laugh, will people think we’re being disrespectful to our daughter?
Because sometimes we laugh.
If we cry, will we make people feel awkward? Because we cry, a lot.
If we smile, will people think we’re okay?
Because we’re not okay. We’re not better, or fixed, or over it.
It’s this constant up and down, like a thermometer…rising and falling.
But most of all, we put pressure on ourselves.
We get tired of crying, but we feel guilty if we don’t.
We miss hearing her voice, but just the sound of it can throw us into utter despair.
Our friends invite us to things. We want to be with them. But sometimes it’s just too much. We hope they keep inviting. We hope one day it won’t be too much.
Grief is a dance we don’t know the steps to, but we shuffle along, trying not to mess up.


***blog friends, for those of you that have sent me emails, links or letters- Thank You! Please dont think by sending me something to help me have strength or be inspired I will be upset. I love it. I love comments and I love knowing who is learning from Makenzie. So keep it up- Keep them coming. They make me smile.

--today--

back from semi sunny las vegas!!!
we had a ball.
i lost my voice.
we all lost some money.
a weekend with no cares.
a weekend with endless fun.
a weekend with endless laughs.
pictures to come.

back to reality.
why does anyone have to be in reality?
i vote every single one of us gets a free pass. a pass to skip over one of these dumb trials we all have to face everyday. i keep hearing from one place or another all the struggles people are dealing with. i hate hearing someone else's hell, only because i wish they didn't have to go through that.
i am dreaming so much of makenzie today. I'm dreaming of her helping other people. i dream of her angel wings, her sweet spirit, her light. i know she is helping so many people right now.
my sweet aunt joyce sent me a book yesterday- its of these beautiful pictures of angels. i looked through this book and talked about makenzie on every page. i could see her. i know she is flying. i know her wings are perfect, i know her body is perfect, i know she can breath. she can play all day and i know she is playing with other little angels.
oh how i wish i could see it.
**today, i will try to make someone else's life a little easier. we all deserve a break**

SMARD

2 hours at PCMC +
flashbacks of those days +
lots of dr. language broken down for me +
questions +
tears =
not much information

unfortunately ry ended up not being able to get off work to come to this apt. i was nervous not for talking with dr. swoboda or asking the right questions or remembering what she told me- i was nervous to walk in those doors. i was nervous i would see one of those wonderful doctors, nurses or any other staff that would make me just break down right there. i was nervous to remember.
.... enough about being there... onto our topic- SMARD.
Another blog friend -Daily Dakin- had a post on smard so I am stealing a bit of what she said and adding some of what I found out yesterday.

What is SMARD? Spinal Muscular Atrophy with Respiratory Distress (SMARD) is part of the Spinal Muscular Atrophy family of disease. It is a motor neuron disease, meaning there is progressive destruction of cells that control motor function, such as breathing and speaking. Cognitive function is unaffected. Like all motor neuron disease, there is no cure. It is an autosomal recessive disease, meaning in theory both Ryan and I carry the mutations that cause SMARD (this is as yet to be determined--we still need to be tested). Testing is done through blood work and was, until very recently, unavailable in the United States.
It usually takes up to 3 months to get any testing results back- Makenzie's blood was drawn on December 3rd and we got her results back December 31st (our amazing Doctor sped the process up for us.) Makenzie has a more unusual case- 2 different mutations.

How is it different from SMA? SMARD is caused by mutations on the IGHMBP2 gene, whereas 'regular' SMA is caused by mutations of the SMN gene. SMARD typically attacks breathing musculature first, and moves to other muscles, this is what happened with Makenzie. Every living child with SMARD is trached and ventilated--without the diaphragm these children cannot breathe.

SMARD is little understood and even less known. Since IGHMBP2 is such a 'newly' discovered gene, there is not a lot by way of information about SMARD (and what is available is scary or requires an MD to understand). As far as we are aware, there are only maybe 60 diagnosed cases in the world.
With SMA- roughly 1 in every 10,000 children are born with this disease.
With SMARD- roughly 1 in every 1,000,000 (if that) are born with this disease.
1 in 40 people are carriers of the SMA gene.
1 in 50,000 are carriers of the SMARD gene.

Our options are not ideal options either. I prefer to keep that part more private since much of it is extremely controversial. What Ryan and I choose to do will not be taken lightly. It will take a lot of thought and prayer but no matter what- nothing will happen for a very long time.
So there it is... dumb disease..

happy 7 month bday baby.

.7 months.
not sure what to say today.
don't know why this morning was so hard.
woke up early to get ready for school- after i got out of the shower couldn't do anything but go in her room. i picked out the outfit i would have dressed her in today- i loved this sweater dress that i bought for her with cute leggings. i whispered what i would have done with her today. i held her socks and diapers and hats and bows.
i looked at her pictures- trying to feel her in my arms, trying to smell her hair.
i looked around that room- that room that we spent hours/days/months getting ready. making it perfect for her. i remember the thought i had when picking out that specific pink for her walls. i remember the visions i had of how i wanted it all to look. i tried to make it a room she would love for years to come.
i held the small amount of hair we took in the hospital. i held her obituary. i held her hand molds.
i read my mini-diary that i kept in the hospital. i wrote down our dreams.
if you don't remember- since she was born i hated going to bed- leaving her in her room- not being with her. so we made up dreams to dream every night so we wouldn't ever have to be apart. i continued that in the hospital. i read how our dreams changed. they went from dreaming we were dancing with our dolls to dreaming we could find what was wrong with her.
(that dream was 12/1 and we got the diagnosis the next day)
i sat on that big ball i used while in labor. i thought about that day- 7 months ago. how could i have ever dreamed this is where i would be today.
without her.
i still don't believe this is my life.
it just cant be.
i ended up staying in there all morning- didn't go to school because i lost track of time.

going to meet with the wonderful dr. swoboda later today.
kenzie was officially diagnosed with smard on dec. 31, 2009 and we haven't talked to her in detail about it yet. the Internet is useless at this time. smard is so new and so rare that there really is no information on it- except for what a FEW sweet people have written on their personal websites or blogs. i think they probably know more than any doctor but i still need this all written out for me before i can really believe its true. she will tell us our options for the future. i want to know more- everything i can about this horrible disease that i hate. i hate that word smard- i hate that meaning- i hate that it took my daughters life. i hate that it continues to take other precious children's lives.
I'm praying extra hard today. to walk back into that hospital. to talk to that same doctor. to understand what she is telling me.

oh kenz... please baby- be with me today. all day. i cant believe how much i love you. i cant believe how much i hurt just wanting to hear you.
just to say your name, have anyone say your name.
i need that.
i miss you.

valentine

look how cool this guy is!
yeah he is mine.
all mine.
nothing left to share. sorry!

since its vday and all- i figure i better talk about my special valentine.
he measures 5' 8 1/2"
weight-- ehhh... unknown at the moment :)
dark brown hair.greenish/brownish eyes.
cutest smile.face.ears.nose.receding hair line.
just a FEW things i adore:
.would rather wear cowboy boots.
.bits his nails- all the time.
.cut off his face hair-just for me. (it was cutting my face up)
.learned when i say-"lets not get each other anything for vday" that really means I'm getting you something so you better still get me something :)
.made me breakfast in bed and bought me roses!
.took me to see a movie, even though he didn't really want to see that movie.
.loves my family.
.loves my friends-which are now his friends.
.kisses me twice every night before we fall asleep.
.holds me when he knows i need it.
.plays with my hair-even though he hates it.
.loves to cook- and is amazing at it.
.watches my dumb reality tv shows-even though he complains through the whole thing.
.misses me during the day and tells me when i get home.
.works his butt off with everything he does.
.has passions in life.
.takes a bath everyday- he isn't a shower person.
.takes bubble baths everyday- hes a little girlie :)
.knows things most guys don't- like the difference between a wedge and a stiletto-ha!
.humors my craziness.
.lets me try on a million different outfits until i feel somewhat good
-even when we are running late.
.makes sure we always have milk.
.knows how much i need kenzies blanket to sleep with
-if it gets away from me at night, he will wrap it around me.
.even though its 2am he will wake up when he knows I'm sad and wrap his arms around me.
.makes fart noises when we walk past someone in the store
-he thinks he is funny.
.wrestles me, lets me win sometimes.
.gives me gum when i have bad breath.
.tells me i smell good.
.tells me he is proud of me.
.thanks me for working hard.
.tells me everyday how he is trying to make life easier for both of us.
.crys when he misses our daughter.
.talks to her with me.
.tells me how we will be a family again.
.tells me i was a good mom.
.will go to her grave any day- any time.
.is usually dirty-but cleans up really nice.
.doesn't know how to act in a nice restaurant.
.is honest.
.smiles at me.
.calls me.
.gives me butterfly's in my tummy.
.puts me in my place.
.lets me push him around sometimes.
.never makes me feel I'm being dumb.
.loves unconditionally.
.teaches me to be a better person.
.makes me laugh- A LOT.
.his short tongue.
.wears wranglers.

.and camo chaps- HA-.
.loved to dress makenzie up.
.always let me buy her new clothes and new bows.
.doesn't complain when i go a little crazy shopping.
.lets me go out with my friends.
.wants another dog.
.does our laundry when i don't have time.
.picks out cute clothes for me.
.loved makenzie more than i could have ever dreamed.
.showed me what an amazing dad is.
.carried my fat but upstairs when i was pregnant.
.makes really amazing things.
.fixes everything.
.plans vacations with me.
.plans our future.
.can jimmy rig anything.
.fixes my car.
.is a pretty rugged man.
.loves duct tape.
.pretends he isn't a softy- it was that little girl that turned him into mush.
.works everyday on our marriage.
.is hairy-but cute hairy.
.runs around for no reason.
.makes fun of me-in a good way.
.talks like he lives on a farm.
.wants to live on a farm.
.pretends he is a cowboy.
.pretends he is hardcore.
.pretends he is a little bit preppy.
.he is a mutt- i love all of that mixed up bit-o-everything inside him.
.i love him.
.all of him.
.even the stinky parts.
.he is my world.

.couldn't ask for any 2 better valentines.
.forever and ever to infinity.

kenzie day #2

month 2 = decorating yummy goodies

we are so blessed to have such a wonderful family.

i cant begin to tell everyone how much it means to have them all

come out and support ryan and i.

they made today a good day.

we:

laughed.

played.

smiled.

ran around.

ate a great lunch.

ate yummy treats.

made a mess.

let balloons go.

this time... no one got hurt- but someone did fall in dog poop!

sorry miss T.

we had lots of cookies-cupcakes-rice crispy treats

we decorated and decorated until everything was gone!

(we thought this was funny- dboy and i dressed the same-
good to know i have the same style as a 6 year old boy)

we bought a bunch of balloons, a few other people brought some to ...but...

we got a wonderful present in the mail, perfect timing. it came in the middle of the festivities.

it was from a wonderful new friend- blog follower Leslie.

she sent us a helium tank and balloons!!!!!

we couldn't believe it.

everyone was so excited. we only blew up a few because ryan and i are

selfish like that and we wanted to play with it later :)

* thank you Leslie. I wish I could meet you and give you a huge hug.

We love our gift and couldn't be more excited to use it!

again, i know ms. Kenz was there.

loving every second of it.

she loves her cousins and is so blessed to have such a wonderful family.