The need to feel...

Today I am posting a video. It's a video about another families tragedy, but it echos our own words and thoughts so strongly. I have to thank my friend Sarah for posting it on her blog.... blown away am I....

The video was made by the group Selah (a Christian band) and the lead singer and his wife have recently lost a baby, they have amazing faith though... it's really something. While what we are dealing with is somewhat different the words of their song for their daughter are words I have thought in my head for Marie... It is a beautiful way to illustrate how it feels to cope with the hardest thing I have encountered in my life. If you like, you can read their story here: http://audreycaroline.blogspot.com/.

It's hard to watch, I cried all the way through, but in some ways it's good to feel it. It's good to feel that firstly, we are not alone. Secondly, it reminds me that I am never alone. Thirdly, it reminds me to be glad that I got Marie. Sometimes, we just get wrapped up. This is now our normal, some days the knowledge that I am going to loose her is so far away, it's foreign land. I notice it at night when she's breathing next to me. The thought that someday she won't be there enters my head and it's so odd, to imagine life without Marie is impossible. She is so perfect, so beautiful, such a joy to be around and care for it is hard for me to acknowledge sometimes that her body is not made to last. Then there are other times when the earth literally moves beneath my feet, I look at her and she's almost translucent. It's like she's halfway to heaven already on really bad days.

Anyway, the video is good. We need to feel.

Secondly, I want to thank all of our family who reads this blog. All of our friends to. It's my therapy, but it is so good to have you all knowing whats going on. That way we can just pick up when we see one another, no need to give you the back story. A lot of my family who reads this blog is family I haven't seen since I was a child. Thank you for reading, thank you for caring after all these years. I will refer to you all collectively "The Irishmen". I am so touched by your willingness to love my girl though you've never met her. Thank you. To my cousin Maria, whom I have never met, thank you too. It feels so good to be surrounded by family, it's something that often was not a part of my life and I am so grateful to have that now. Finally, my cousin Renee, you know :) I am so glad I have you!

Here is the video, please enjoy... I'm grateful to this family for having the strength to share their story, to help me along with my own journey.





I Will Carry You

There were photographs I wanted to take
Things I wanted to show you
Sing sweet lullabies, wipe your teary eyes
Who could love you like this?

People say that I am brave but I'm not
Truth is I'm barely hanging on
But there's a greater story
Written long before me
Because He loves you like this

So I will carry you
While your heart beats here
Long beyond the empty cradle
Through the coming years
I will carry you
All my life
And I will praise the One whose chosen me
To carry you

Such a short time
Such a long road
All this madness
But I know
That the silence
Has brought me to His voice
And He says...

I've shown her photographs of time beginning
Walked her through the parted seas
Angel lullabies, no more teary eyes
Who could love her like this?

I will carry you
While your heart beats here
Long beyond the empty cradle
Through the coming years
I will carry you
All your life
And I will praise the One whose chosen Me
To carry you

Another week gone! I've been a slacker this week in updating. Josie and I ordered books from Amazon and we've been reading a lot this week. She got two new ones, both Stage 1 Beginning Readers. They are: Fancy Nancy and the Boy From Paris, and Fancy Nancy at the Museum. We do so love Fancy Nancy! The best part is, Josie can read words! So far we're reading and, at, to, I, a, me, and other simple small ones. It is so cool to sit with her and see it click!




My brother Mickey came to hang out on Thursday and we had fun with him. He is turning 21 on Sunday, it makes me feel a little old (I am 7 years older than him, he's still supposed to be a baby). He has a lot of fun at college, only 40 miles or so from here so we don't get to see him a TON, but when we do it's always a good visit...

Maria!!!



Thank you for the TastyKakes! They were such a fun surprise, and, Luke got to taste them for the first time ever (he is a fan). Josie loves them, it was such a fun, fun treat! Mickey was here when I opened the package and he made off with one of the boxes, but it was okay, it makes a nice birthday gift for him:)

Thank you so much, you made our day, it was so sweet of you to think of us!

Marie's Story

Marie Isabel was born March 3, 2007. She arrived right on time, on her due date and her arrival was much hoped for by her mother, father and sister.
Marie kicked so hard in utero that everyone was certain she was a boy, everyone but big sister Josie who knew with no uncertainty that she was going to have a sister.
Weighing it at 7lbs 15 ounces and 20.25 inches tall we brought home our dark haired girl and settled into a deliriously happy existence.
All went well, Marie developed normally until 5 and half months. At this time she started showing an intentional tremor, most noticeable when eating, playing or crying. We met with the neurologists on October 16, 2007 at The Children's Hospital in Aurora, Colorado. We were admitted to the hospital that day through emergency and in the days that followed we were mis-diagnosed with a form of cancer. A CAT scan didn't show the tumor that they believed was there and from there we met with the metabolic doctors. Marie's MRI showed lesions in her brain and they gave Marie the diagnosis of Leigh's Disease, on of many Mitochondrial Disorders.
In December, 2007 genetic testing found the mutation in Marie's Mitochondrial DNA. Almost 100% of the cells in her blood are affected in Complex I of the cell's respiratory chain, this means that they cannot produce energy efficiently enough to sustain her. Marie suffers from a severe energy deficiency.
The tremor has vanished now, but Marie is troubled by severe reflux (or vomiting). They tell us she suffers from a "failure to thrive". Marie no-longer takes a pacifier, she struggles to suck hard enough to keep it in her mouth. Her head control is poor, and she doesn't stand often. Many nights, Marie does not sleep well, though Mommy and Daddy try to keep her comfortable in between them. She has periods of pain, as of yet unexplained.
Despite all of this every day with her is a blessing, she can laugh, she can smile, she can play. On good days she can roll over. We try so hard to focus on the good, and take the best care we can of the blessing we have been given.
Update March 2008. Marie is no longer vocal, rarely makes eye contact. Emotions are hard to read, we think she still smiles sometimes. She has seizures and we're trying out the drug Keppra to control them. She is tube fed, but still nurses like a rock star. She sleeps in the middle with Mommy and Daddy every night. She is soooooo LOVED!

Update, September 2008: EEG has proven Marie DOES NOT have seizures, she has a movement disorder called Dystonia caused by the damage to her brain from Leigh's. She is now completely free from seizure medication and much more alert. She coo's, she smiles, she plays. She is such a joy! How blessed are we?!
Update April, 2009: Marie is proof that God answers prayers. She smiles, talks, plays, still eats by mouth, though she did wean herself from nursing in March. She is able to move her head side to side, and with assistance can hold very small things in her hands. She adores her big sister Josie, and has a very special relationship with her Daddy. Diazepam is controlling her movement disorder, Dystonia, nicely and it is no longer an issue. The majority of her nutrition is via g-tube but she does enjoy eating bits by mouth. She is almost 22 lbs at 25 months old! Currently Marie only takes Diazepam and Melatonin regularly. Putting her care in God's hands has been the best medicine for her that we've found and He has blessed us.

Update September 17, 2009:
On August 28, 2009 God called Marie home to be with Him after the most beautiful summer together.  She fell asleep the night before safe in bed beside Daddy while I was at the hospital with her new little sister who had arrived that day.  Sometime in the early morning hours God called to her and she flew, waking in Jesus arms.  She is healed, Praise God, and she is running, dancing, singing and laughing in the fields of Heaven.  We are struggling daily to get by without our joyful girl.  It is hard to be without her but we rejoice anticipating our reunion with her when our work here is done.  Big sister Josie misses her sister badly, and little sister Sarah will learn about her through pictures and stories.  We were blessed with the time we had, we know that no matter how long we could have had her it wouldn't have been enough.  Our special angel, beautiful girl, Little Mama, perfect princess, we miss you and we love you.

Hooray! It has been one long, stinkin' week. Jo's got soccer practice this evening and then we're having pizza (from the freezer, I haven't made "real" pizza in so long its just sad). Tomorrow she has a game at the obscene hour of 8:30. Should be interesting, morning people we are not.

Grandma Judy is coming to visit, and cheer on Josie...

I am stealing this idea, I used to do something similar but haven't in awhile. So, Marie and Josie's top 10 favorite things (in no particular order)!

Josie loves (in her own words):

Dragon Tales.

Her purple bunny rabbit.

Herself

Mashed potato's

Doing arts and crafts

Singing her ABC's

"Three Little Birds" or the "Gunna be alright song" by Bob Marley (our song has changed in honor of this favorite thing)

The Disney Princess'

Pickles

Singing songs and twirling

Marie loves (according to Josie and Mommy):

Josie

Blue Bear

Cool Whip

Bath time

Chocolate pudding

Daddy

Rainbows

Socks (seriously, she loves socks. We have to help her now but she loves holding them, chewing on them, pretty much everything to do with them)

Bubbles

Twinkle Twinkle Little Star is her favorite song (Josie says, Marie might dispute this)

Rant

I'm mad. Mad that my calls are not important enough to be returned. Mad that I get the feeling that sometimes, if you are outpatient, you are not considered to have as much medical necessity as inpatient. I'm mad that I made phone calls to doctors today about two relatively time sensitive issues and neither one saw fit to call me back.

Marie is dealing with chronic constipation. In the last two weeks she's managed to "go" six times. I'm worried that the issue is perhaps more serious than I had believed before, because, she's on Milk of Magnesia twice a day and still doesn't go. I'm scared that her bowels might be stopping working. It sounds like I'm a hypochondriac but I'm not. I don't believe that I am anyway... I have a child with a degenerative disease, I freak out about things. It's allowed.

Also, Marie has had 22 seizures today. Those are the major ones that we notice anyway. Our family doctor thinks she may be having more than I realize because she does this thing where her eyes go two different directions and he thinks that simple act could be a seizure unto itself. She is TIRED! She is pale, she makes moaning noises during her "episodes". She is non-verbal, she doesn't normally make any noise at all, but she moans during seizures. I feel her, I think they hurt. I am ticked that I feel like doctors do not listen to me. She's had her emergency extra dose of Clonazepam and they've slowed down, but come on! 22 is a lot!

I feel anxious because I feel like there's something more I should be doing to call attention to her issues that I'm not aware of. What? I think of things over and over again, what I could do differently but I'm stumped. I just hate that things are happening to her and I cannot stop them.

Ugh, just talked with the on call Neurologist... apparently the nurse at the clinic was supposed to call and never did. I will have her neck.... Marie is taking higher doses of all her drugs. This means in an effort to control her seizures she will be my little zombie for the next few days. Some days we cannot win for loosing. To top it off I called our hospital to leave a message for our family doctor so that he is aware Marie's meds have changed. The nurse I talked to there was rude to me. Don't these people know not to mess with Mommy?



On a lighter note, Matt, you make me smile. When I am excited about techie things I will make sure I use proper terminology in the future, it just makes it cooler:) Thanks for the heads up!

New look

Some of you might wonder what the heck I am doing. I figured out how fancy up my page is what! I'm sort of proud of myself, I'm sort of learning the whole "code" thing as I go, and this was a big assignment. I kind of like it, not sure I'm too keen on the text color but other than that, is nice.

Also, the song is Josie's choice. She loves this one... it's catchy, I'll say that. So, I'm proud of myself and I had to brag a little that I managed to alter my page this much. I have plenty of time since Marie has been sleeping in my arms and Josie is watching Sesame Street... that's right, still can't really lay Marie down for naps. Even if I could put her in the crib it makes me to nervous to leave her there since she doesn't cry. I'm terrified that something bad would happen and I'd have no idea. So, in my arms she stays. Spoiled, spoiled girl :)

Brave Little Soul

I found this and had to share... We made an unexpected trip to the clinic today, Marie's been having a tough time. Check her Caring Bridge page for more details. Please enjoy the story below.

Brave Little Soul
The Brave Little Soul By: John Alessi

Not too long ago in Heaven there was a little soul who took wonder in observing the world. She especially enjoyed the love she saw there and often expressed this joy with God. One day however the little soul was sad, for on this day she saw suffering in the world.
She approached God and sadly asked, “Why do bad things happen; why is there suffering in the world?” God paused for a moment and replied, "Little soul, do not be sad, for the suffering you see, unlocks the love in people’s hearts.” The little soul was confused.
“What do you mean,” she asked.” God replied, “Have you not noticed the goodness and love that is the offspring of that suffering? Look at how people come together, drop their differences and show their love and compassion for those who suffer. All their other motivations disappear and they become motivated by love alone.” The little soul began to understand and listened attentively as God continued, “The suffering soul unlocks the love in people’s hearts much like the sun and the rain unlock the flower within the seed. I created everyone with endless love in their heart, but unfortunately most people keep it locked up and hardly share it with anyone. They are afraid to let their love shine freely, because they are afraid of being hurt. But a suffering soul unlocks that love. I tell you this - it is the greatest miracle of all. Many souls have bravely chosen to go into the world and suffer - to unlock this love – to create this miracle - for the good of all humanity." Just then the little soul got a wonderful idea and could hardly contain herself. With her wings fluttering, bouncing up and down, the little soul excitedly replied, "I am brave; let me go! I would like to go into the world and suffer so that I can unlock the goodness and love in people’s hearts! I want to create that miracle!" God smiled and said, "You are a brave soul I know, and thus I will grant your request. But even though you are very brave you will not be able to do this alone. I have known since the beginning of time that you would ask for this and so I have carefully selected many souls to care for you on your journey. Those souls will help you create your miracle; however they will also share in your suffering. One of these souls are most special and will care for you, help you and suffer along with you, far beyond the others. She has already chosen a name for you. God and the brave little soul shared a smile, and then embraced. In parting, God said, “Do not forget little soul that I will be with you always. Although you have agreed to bear the pain, you will do so through my strength. And if the time should come when you feel that you have suffered enough, just say the word, think the thought, and you will be healed.” Thus at that moment the brave little soul was born into the world, and through her suffering and God’s strength, she unlocked the goodness and love in people’s hearts. For so many people dropped their differences and came together to show their love. Priorities became properly aligned. People gave from their hearts. Those that were always too busy found time. Many began new spiritual journeys – some regained lost faith – many came back to God. Parents hugged their children tighter. Friends and family grew closer. Old friends got together and new friendships were made. Distant family reunited, and every family spent more time together. Everyone prayed. Peace and love reigned. Lives changed forever. It was good. The world was a better place. The miracle had happened. God was pleased.

Quiet....

It is so quiet here this morning. Luke took Josie to her Ear/Nose/Throat apt so it's just Marie and me here. Hopefully Josie's visit with the doctor goes okay. Her ear tubes have been in for too long, 3 years (!) so they're going to talk about surgery to remove them and patch the hole in her eardrum. This sucks, everyone else I've talked to had the tubes fall out on their own. Poor Josie, those who know her understand, this will be MAJOR DRAMA! She is also going to have a lunch date with Daddy on the way back and she's happy about that. I'm making Luke go to WalMart on his way home though.... he hates WalMart!

Marie and I are good, we're playing with seizure meds again to get hers back under control. I counted 15 yesterday, 5 were major, so hopefully this gets settled soon. It sucks for her, but she's so tough. She just grabs my finger and we get through it together. It's odd that I can talk about it so calmly, but it's become our day to day. We know how to cope, so we just do what needs done. Marie is so patient, it inspires me to be a little calmer about everything myself.

This week was an interesting one, I made a lot of new friends. I have discovered this entire group of women who are so strong, they are mothers to babies with special needs too. I think sometimes that I've got it hard, but in reality my story is nothing compared to a lot of them. There are some tough Mama's. It's good to have found them, to pull strength from their stories. It is amazing how we are able to find the people we need. It'd like to think that it's God's hand guiding me in the directions I need to be going. I'm a little clueless, so I have to thank Him for the help. I truly believe he introduced me to a few people this week for a reason.

My sister Annalee was supposed to come and visit yesterday, bummer that the snow came. She's coming today though and Josie is SO EXCITED! I'm looking forward to seeing her too. We don't get to hang out much, so this will be nice. I hope the roads are good for her to get here. I think we got about 8" of snow yesterday, it's hard to tell though since it mostly came down sideways on account of the wind. Can you believe last week I was actually online shopping for a pool for the backyard? I love wearing flip flops and snow boots in the same week!

Also, thank you to those who have made tributes in honor of Marie on her Caring Bridge site. I didn't notice they were there until Annalee pointed them out to me. Thank you:) I am feeling the good in the world. There is a lot of it, although they don't show it on the news. I'm sort of in awe of how many people Marie has touched. She's reached out to more people in her life than I ever have in mine. It's amazing. Thank you for caring about her!

The wind is still blowing here... I'm thinking I need to go to my beach with a big pitcher of margaritas... sadly that probably won't happen. Instead I should clean the bathroom, I am such a lucky girl!

I do have lots of soccer pics to put up too, they're just on the camera. I know, I am feeling lazy though. Josie's got another game tomorrow so I'll be taking more I'm sure. She really loves playing.

I'll leave you with a laugh and another installment of my Funny Things Josie Says:

"Soccer girls wear pony tails Mom, and I am a soccer girl"

"Eyelashes on boys means handsome". Heaven help us!!!

While talking on the phone to my cousin Renee "I'm going to hang up on you now"...

"I'm bored putting away my toys" "I'm bored eating dinner" "I'm bored getting dressed" Notice a theme here?

"Girls like green beans, and I am a girl!"

"When you wear glasses you don't look like my Mommy, you look like a weird Mommy" Thanks.

"Why does God take so long making is summer?"

"That took a long time, like eighty four hundred seconds!" I've know idea how long that actually is, but apparently it is a very... long... time....

Smiling....

Feeling good after the bath....

Daddy loves that baby so...
That tickles!
Pretty girl...