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Thursday, September 30, 2010

Thoughts

As I sit here and watching Charlotte complete her vocabulary and watch Julia complete her math and watch Delaney sit on the floor and read her books I am finishing The Messenger by Jeni Stepanek.

I am waiting for Delaney's best friend to get out of surgery for her muscle biopsy. I am waiting for the speech therapist to come and visit Delaney. I am waiting for Charlotte to finish her school work so that we can talk about what we will do this weekend. I am waiting for Julia to finish her school work so that I can watch her play outside and enjoy the gorgeous day.

For me life has always been a hurry up and wait situation. Hurry up and get ready so you can wait on the start of school. Hurry up and get ready so you can wait on your teammates to arrive for practice. Hurry up and do all of you work so you can wait for the next assignment to be given. Hurry up and get dinner ready so you can wait on everyone to sit down and be ready.

Reading The Messenger has been thought provoking to say the least. In a time where we are in limbo...waiting...to hear what our youngest daughter's true definite diagnosis is...it was probably not the best book to read. In this waiting period our nerves/emotions are raw. They are exposed for the world to attack. Tears are flowing a lot more freely during these days of wait. Tempers are flaring a lot quicker. Anxiety is creeping up out of no where. We are living this life of frequent infections, constant feeding issues, seizures, gaining and losing skills, tears, pain, joy, triumph, simplicity, humor, learning, and laughing. We are living it without a name. And for some reason...for us...we need that name.

So anyway as I finish this book a piece of it sticks out to me and I want to share it with all of you...well at least those that still actually read this blog. (if you are out there leave us a message so we know we still have readers) :)

"This book offers the story of Mattie's choice, his decision to celebrate life and perceive it as a worthy blessing even during the most painful moments. It would be his hope, and mine, that his example now serve as a reminder that while we can't always plan our future or choose what becomes our memories, what happens doesn't have to define us, or limit us, or control us. We can always find something good in the moment at hand, in whatever comes next, and even in how we reflect on the truth of things past, and in that way, help shape the world. That is his essence, his legacy. As Mattie wrote: Blessed are those who, Bear the Torch of hope, For they shall have peace!"

We have a choice. We have a choice to add to the beauty of the world...or take away from it. I know I don't always make the right choices but I try to learn from the wrong ones.

Basically what I'm trying to say is whether your plight is a sick/special kid, a rocky marriage, your own illness, strained relationships, financial issues...read this book. It brings it all back into focus. You will be laughing out loud, talking to the book in places, and crying. It's an amazing read. One that I hope my kids will all read someday.

Friday, September 24, 2010

I Could…If They Would


If they would find a cure when I'm a kid…
I could ride a bike and sail on rollerblades, and
I could go on really long nature hikes.
If they would find a cure when I'm a teenager…
I could earn my license and drive a car, and
I could dance every dance at my senior prom.
If they would find a cure when I'm a young adult…
I could travel around the world and teach peace, and
I could marry and have children of my own.
If they would find a cure when I'm grown old…
I could visit exotic places and appreciate culture, and
I could proudly share pictures of my grandchildren.
If they would find a cure when I'm alive…
I could live each day without pain and machines, and
I could celebrate the biggest thank you of life ever.
If they would find a cure when I'm buried into Heaven…
I could still celebrate with my brothers and sister there, and
I could still be happy knowing that I was part of the effort.

here is the link to the youtube video of the song
From moment to moment things change. For a few minutes/hours/a whole day our kids are hardly different from their peers. But then in a split second, for no outside reason, they come crashing down. We, as parents, mourn those times. We grieve. We are overcome with fear that THIS crash could be the one our child never bounces back from. Our kids are real, they cry and they laugh. And souls like theirs are so very rare. As parents, we are afraid and we are hopeful. - God never promised it would be easy. He just promised you would never do it alone.

I wrote that in an email to a couple of Mito moms yesterday. One of the moms reposted it on her facebook page. I didn't realize at the time that my words would hit her like they did. I was really just trying to let her know even though we don't have a final diagnosis for Delaney that we understand fully what she's going through. I was trying to share with her that Mattie Stepanek author of Heartsongs and a "Mito Warrior" and his mom Jenni Stepanek author of Messenger and a "Mito Warrior" were inspirational for us right now.

This week is coming to a close. Many of you have done research on Mito this week. Some have donated to United Mitochondrial Disease Foundation in honor of Delaney. Some have donated to Delaney's medical expenses. Some have prayed. Some have given thought about her this week. Some have simply taken the time to read my blog posts, no matter how scattered. Some have signed up to read our carepage. Thank you. There are no words to tell you what it feels like to have ANY of these things done for Delaney. It makes us feel a lot less alone. It takes a village to raise a child. Well I"m pretty sure it takes a whole country to raise a special needs one. So thank you for being our country.

Julia provides comic relief. She PLAYS with Delaney. She talks to her. She protects her. She adores her. And Delaney pretty much adores Julia. Smiles huge when she enters a room. Laughs at all her jokes. Cuddles with her. Julia is a great big sister.



Charlotte is our protector. She's the hands on sister. She is constantly asking to help with diapers, clothing changes, medicines, feeds, etc. She soothes Delaney. She teaches her. She includes her. She is definitely a biggest sister. And Delaney's day isn't complete without her Charlotte. One of D's sometimes words is CharChar. She will search Char out in the house. She will have "conversations" with Char. She loves her so very much.



With her sisters at her side she can traverse any obstacle. They can usually be seen flanking her. Surrounding her. Without any prompting they protect her and join together to make her laugh. And I must say Delaney makes them laugh too. God chose these girls specifically to be her sisters and I am so very proud and honored to be their parent.




We sure have fun in this house. Pig tails all around. Delaney got them, then Charlotte put them in, then Julia requested them. That's usually how it goes here. Char starts dancing, then Julia starts dancing, then Delaney starts dancing. Or whatever the activity may be its usually done as a group.



This is an older picture too but boy does it show them in their true style. Even though some days pretty much suck raising three girls (hormones, emotions, etc) days like this one are so very worth the rough days.

Thursday, September 23, 2010






We are reading Heartsongs and Messenger in honor of Mitochondrial Awareness Week. Mattie Stepanek, his three siblings, and his mom all suffered from Mitochondrial Disease. I wanted to share a couple of poems I read of his.

About Promises

Promises
Should be
Taken seriously
Because
They involve
Something
That will
Somehow
Touch
The future
Of some life

April 2000



Royal Decree

Once you make a friend,
Never stop being a friend to them.
Celebrate all the holidays, somehow.
Don't drink alcohol unwisely.
Do not be evil, mean, or bad.
Don't say any bad words,
Especially words like "Shut Up!"
Believe in the Clean Dish Fairy.
Put on the porch life if
A family member is out after dark.
Use your best manners, no exceptions.
Always have an interest.
Be gentle with people and the earth.
Don't do any bad things.
Be patient with yourself and others.
Be good everywhere you are and go.
Decree that you love life, every day.

April 1998

Wednesday, September 22, 2010

What if I Stumble- DC Talk

"The greatest single cause of atheism in the world today
Is Christians who acknowledge Jesus with their lips
Then walk out the door and deny him by their lifestyle.
That is what an unbelieving world simply finds unbelievable."

Is this one for the people? Is this one for the Lord?
Or do I simply serenade for things I must afford?
You can jumble them together, my conflict still remains
Holiness is calling, in the midst of courting fame
Cause I see the trust in their eyes
Though the sky is falling
They need Your love in their lives
Compromise is calling

What if I stumble, what if I fall?
What if I lose my step and I make fools of us all?
Will the love continue when my walk becomes a crawl?
What if I stumble, and what if I fall?

What if I stumble, what if I fall?
You never turn in the heat of it all
What if I stumble, what if I fall?

Father please forgive me for I can not compose
The fear that lives within me
Or the rate at which it grows
If struggle has a purpose on the narrow road you've carved
Why do I dread my trespasses will leave a deadly scar
Do they see the fear in my eyes? Are they so revealing?
This time I cannot disguise all the doubt I'm feeling


What if I stumble, what if I fall?
What if I lose my step and I make fools of us all?
Will the love continue when my walk becomes a crawl?
What if I stumble, and what if I fall?

What if I stumble?
Everyone's got to crawl when you know that
You're up against a wall, it's about to fall
Everyone's got to crawl when you know that

I hear You whispering my name [You say]
"My love for You will never change" [never change]

What if I stumble, what if I fall?
What if I lose my step and I make fools of us all?
Will the love continue when my walk becomes a crawl?
What if I stumble, and what if I fall?

What if I stumble, what if I fall?
You never turn in the heat of it all
What if I stumble, what if I fall?
You are my comfort, and my God

Is this one for the people, is this one for the Lord?

Tuesday, September 21, 2010

For Mito Awareness Week

Check out this link!


http://www.youtube.com/watch?v=8PApuJs_vPA&feature=youtube_gdata_player

Thursday, September 9, 2010

What is Mitochondrial Disease

We feel like people just don't understand what mito is and why this is so serious so I thought I'd direct you to look at the website FAQs. Happy reading!!

http://www.umdf.org/site/c.otJVJ7MMIqE/b.5692895/k.B04C/FAQs.htm

*****

PS From Kathy: We are facing an unknown diagnosis. We are not saying that she HAS mito. We are simply saying that doctor after doctor has looked at us when we said we are going to Atlanta (after her neurologist referred her) and said "oh that makes a lot of sense". It becomes more and more real that it's a honest possibility. Mito is not fun. It's not cureable. We don't want that to be on our daughter's list of diagnoses. BUT It's life. It's what we are facing. It's what at this time we are trying to process. I mean honestly they are cutting Delaney's leg open and sticking a needle in her back to extract fluid to test for this disease. If it wasn't a big possibility of the answer we would NOT put her through it. Thank you for hanging in there while we search for answers and live life. I am glad that Jess posted this to share information. We have some friends whose children have Mitochondrial Disease already diagnosed. We have other friends that are in the process like us. And it's important to get the word out. To make Mitochondrial Disease a household name so research and support grow!

Wednesday, September 8, 2010

Benefits to Homeschooling






Our girls have experiences that they wouldn't normally have.

When Delaney was in the hospital the girls came to visit and spend a couple of days up there. While up there they were able to meet the buddy that Delaney and I had gotten to know. Her name is Audrey. She's 7 and is battling AML leukemia. Julia really struck up a friendship. They like a lot of the same things and played for HOURS. This friendship would not have happened had our girls been in a traditional school.

Last week we went up to bring lunch and visit Audrey and her mom and dad. The girls once again picked up where they left off and played for hours.

Today we went up again to visit Audrey and her mom. Delaney is in love with Audrey. She has just bonded to her so tightly and so quickly. It's quite amazing. Julia and Audrey play games and giggle. It's great seeing girls be girls. And then today Audrey said something that has really troubled both of the big girls. She said she didn't want her picture taken because she wasn't pretty without hair. BOTH Charlotte and Julia jumped on that explaining she was so beautiful. Delaney even rubbed Audrey's head as if to tell her she liked the lack of hair. Illness isn't just the doctors visits and medicines. It's an entire body change. Audrey lost her hair. She's lost weight. She had to get a hickman line put in. Delaney's belly has forever changed because of her gtube. She wears glasses. She wears braces. Our friend Peyton had to deal with an NG tube, braces, glasses, walker, and now an adaptive stroller/wheelchair. These little princesses that dream of dancing and twirling and playing just like everyone else...look different for one reason or another. And each of them struggle with that. I think these girls are beautiful beyond measure. I think they are amazing.

A friend sent me this poem and I wanted to share it. Author is unknown.

The wind's not always at our back,
The sky is not always blue.
Sometimes we crave the things we lack,
And don't know what to do.

Sometimes life's an uphill ride,
With mountains we must climb.
At times the river's deep and wide,
And crossing takes some time.

No one said that life is easy,
There are no guarantees.
So trust the Lord continually,
On calm or stormy seas.

The challenges we face today,
Prepares us for tomorrow.
For faith takes our fears away,
And peace replaces sorrow.

Like I said homeschooling has it's benefits. My girls got the chance to meet Audrey. They get the chance to give back to lots of children.

Tuesday, September 7, 2010

I am grateful for you

Thank you for all of your support. The community of people following our blog is priceless to us. We have family, real life friends, online friends, complete strangers. The fact that you read her updates is amazing. Just to follow her journey...and ours is so moving. Thank you for taking that time. From the cards, prayers, gifts, donations, thoughts, messages, emails, phone calls, text messages, etc. We couldn't do it without you. Delaney looks at her cards and pictures every single time she gets a diaper change or her button cleaned. She plays with her toys everyday because they are in our living room. We are able to make trips like Atlanta possible because of donations and help babysitting the big girls. So thank you...for being there.

Saturday, September 4, 2010

Prayers and Miracles

The waters around us are turbulent. We know a lot of people struggling right now. I am writing this blog as a plee for prayer/positive thoughts/miracles.

First, Nathan is the son of a woman I would most definately call a friend. We met through the blogging world and have bonded through our stories. We actually do talk off blog nowadays. We had plans to meet up but Delaney started getting sick and our trip out west got cancelled. Anyway Karen is such an awesome mom. She totally trusted her mommy gut and took Nathan to the ER thinking he would maybe need a couple of days of IV antibiotics...well after surgery, PICU room, and intubation things have kind of spiraled. Although we have never met we love this family and ask for you to send your prayers and positive thoughts to them as Nathan heals and Karen watches over him. We love you!

Second, baby Violet. We met baby Violet while we were inpatient last week. She is the cutest little doll. Her mom is totally sweet and upbeat and caring. She and I walked the halls and talked. We stood in the middle of the hallway blocking toddler car traffic talking about our kiddos. Yesterday she and her husband took Violet home for good. Treatment is not working for her cancer so they took Violet home to live life to the fullest. I am asking for prayers. For a miracle. I am asking for peace for this little family.

Third, Audrey. Audrey is the most amazing 7 year old I've EVER met. She has the light of a very powerful peace worker. She is thoughtful and caring. She is hilarious. She is compassionate. She loves babies and glow sticks and crafts. She loves spongebob and playtime. She loves salad but not vegetables. She loves mac and cheese and lasagna but not pasta. :) Gotta love the thought processes of a 7 year old. She is battling a mighty big beast. AML Leukemia. She is a fighter though. She's currently in remission. However this round of chemo has really taken a toll on her. She's struggling to maintain her weight, eat, have energy. Please pray that her fight continues. That this cancer gets the hell out and stays out. Pray for her beautiful family. We love you guys!

Today I let go of everything. I let go of the tears that I had been holding in. I let go of the fears I have about Delaney. I let go of discipline and chores and schedule. I took our girls out to the playground. I watched as Julia and Charlotte instinctively surrounded Delaney as they walked the 50 yards to the playground. I watched as Charlotte picked her sister up because she had become too tired to go up the playground stairs. I listened to the laughter and giggles. I took pictures. I watched intently over our gaggle of girls. When we came home we cleaned out the little tykes car so Delaney could sit down since she was too tired to continue playing but wasn't ready to go inside. I played soccer with Julia. I played tether ball with Charlotte and then with Julia. I watched the girls play soccer together and many many rounds of tether ball. I watched all three girls enjoy popsicles outside. I listened to stories and I stopped to enjoy them.

Time is limited for ALL of us. Time with our spouse, time with our friends, time with our kids. I am figuring out a better way to spend my time. I encourage you to do the same.

Friday, September 3, 2010

Funny Video

This started out as cute video of Delaney enjoying playing outside with Charlotte but then when she accidentally got her hands in some rain water she started freaking out over her hands being dirty. It's nice to be able to share her little neat freak tendencies with the world. :)

video