Fasting

Today I had the opportunity to talk to Anna about fasting.

Today my sweet ward family united their hearts and prayers in behalf of my sweet little boy. Normally we would fast on a designated Sunday of the month but this was different. The bishop chose today, just a regular Sunday, to be a day when all of our ward would pray for him and his well-being.

Today we are praying for stability. We are praying for control. Specifically we are praying that the B-12 shot regimen, we are going to start this week, will help in controlling the seizures.

Growing up, I remember participating in 2 ward fasts; both incredible experiences.

Today I feel incredibly honored to be a recipient of such incredible blessings.

I said to Anna, "You know when you want something really really bad?"

"Yes! Like when I wanted my Rapunzel doll from the store."

"What are some things you could do to tell me how bad you wanted that thing?"

We came up with some different ideas: cleaning her room, being extra good, not fighting, being obedient.

I explained to her that fasting is like telling our Heavenly Father that we want something really really bad. It is hard to go with out food and it is really hard for you (Anna) to clean your room. She then started to giggle; meaning she was understanding what I was explaining.

I explained to her that today we are going to do something really hard....no eating food and we are going to pray really hard and hopefully Heavenly Father will bless us for doing something really hard. Just like I would reward you for your hard work when you clean your room.

"Oh I get it!" she says to me. She then preceded to tell me what "meal" she was going to skip. {all of them...except snacks;)}

I have thought a lot about this conversation. I know with all of my heart that Heavenly Father knows what I want. And I also know with all of my heart that He knows what is best for all of us (Quinn and our family). I know that my Father will bless us. How he will bless us, I am not sure but I know he will. I will never be the same person I was 6 months ago. I have learned life lessons that I wouldn't trade for all of the money in the world. I know my savior Jesus Christ. He has been with me every step of the way and I have no doubt he will carry me until it is over.

Fasting is a powerful plea to our Father in Heaven.

We will be blessed for our efforts.

Thank you for all of the prayers.

I will remember this day for the rest of my life.

3rd Child Syndrome

My sweet little Charlotte is the 3rd child.

She is patient.

Happy.

Easy-going.

The peace-maker.

and some times (with regret) is neglected...

take for example the other day:

I was fixing dinner while holding Quinn (so he wouldn't get hurt) while talking on the phone. Things got quiet. I'll bet it was 5 mins before I turned around to see this.

sound asleep. no complaining. just dealing with what she'd been given.

What an angel! Oh how I love this little one!

Drool Babe

I am kind of excited about this!

So a while ago, when I was pregnant with Charlotte, I designed a bib.

A bib that would actually absorb drool and keep your baby dry.

So way back when, when things were stable at my house, I made a bunch of these bibs in hopes that someday I could open an Etsy Shop. Well this weekend I have done just that!

These bibs are perfect for shower gifts...a unique hand made gift can never go wrong!

If you have a minute head over to my shop, Drool Babe, and check it out.

Oh and I have a coupon: the first 5 bibs sold are 40% off!

*We are hoping that the sale of these bibs may help reduce the ever-growing medical bills we are accruing.

Meet the Newest Member of our Family...

This is Quinn's new helmet.

Very rarely will you see him wearing it correctly.

There are some battles not worth fighting.

This is one of them.

We figure he is still pretty protected.

We ditched the rainbow strap.

Not only was it a little fruity but it would chafe his little chin...lame design.

By way of update: Things are ok. We have seen a decrease in seizure activity. The absent seizures (which are one of the harder seizures- for me to watch) have pretty much disappeared this week. I am well aware that they may return but today they are gone. Unfortunately Quinn had a grand mal last night/early this morning. We had about a 3 week stretch since the last one so that was nice.

This coming Thursday marks the month for the vitamins (filling up the gas tank). We are going to have his blood checked this week to see if the acid levels have decreased. If they have then we will be ready to start the B-12 shots. I am still hopeful.

I am awaiting a phone call from the neurologist to see if we need to alter meds again. It is a holiday weekend so I doubt we will hear anything for a few days.

Our sweet ward family is going to hold a fast for our little guy in one week, July 31. We invite any of you to fast with us. We are praying for stability.

Thanks again for all of your support. We love you!

Welcome to Holland

Yesterday I spent some time talking to my mom on the phone.

I talked to her about how hard it is to watch friends who are still living their lives

...the life I used to live.

The busy,

productive,

fun-filled life-

my life.

The one I still want.

The one I long for almost daily.

I have found myself, unintentionally, distancing myself from those people who I would "hang out"with all of the time. I know it sounds silly, immature, or ridiculous; but the truth is- it hurts really bad.

I know with time I will heal. I will accept my new life and find the joy with in because there is joy in this life...even more than in the past.

This morning my mom sent me a story that completely portrayed how I feel. I like it...a lot!

Maybe some of you can relate.

Welcome To Holland – by Emily Perl Kingsley

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Because He Can

The past few days have been rough...really rough. Quinn's poor little forehead is blanketed with bruises and scabs. My heart has been ripped out as I have watched my baby bleed due to the insensitive seizures. I want to feel numb. I want my emotions to just be turned off. I want to feel nothing. At times I have found myself avoiding eye contact with Quinn because it hurts too bad. He is almost constantly in a state of seizure; he is just not there. He smiles at me but has a hard time speaking. Every once in a while I'll get a kiss but then the kiss is quickly stolen and masked by the awful seizure that has kidnapped my child.

On Monday morning I received an email from a sweet friend who is in India on a Humanitarian Service Project. She is there working in an orphanage for children whose parents are suffering from Leprosy. {and I think I have it bad} This particular morning I was feeling really down. Alone. Desperate because I, as a mortal, can not possibly take this burden from my sweet baby.

I began to read and the flood gates were opened.

I wanted to share a little piece of this beautiful experience with you.

She sets the scene where she is headed into a little hostile which houses orphaned-disabled children. She and a few others went to spend time with these kids. There was a communication barrier. They communicated through smiles and song. One little girl in particular warmed my heart and made me realize the veil is so thin for these special little children:

...The little girl that I was sitting next to turned around in this corner of nothing and pointed pulling my arm. I tried to say "what are you looking at" and she grabbed my hand gently and pointed again. Then she began to stare with a smile so Christlike it made me cry. She stared and stared into this corner for almost five minutes and held out her hand as if something was reaching for it.

There was nothing there.

I watched as this little girls eyes slowly followed the ceiling where she waved. I started to cry. I had the most overwhelming feeling that I knew without a doubt that there was an angel in this room and I have never felt so strong about something before. She looked at the ceiling for a while and then looked at me and grabbed my hand.

The past few days I have felt a myriad of emotion all revolving around the reality that I can not protect my child from everything.

I can't catch every fall.

I do not have the power to take the seizures away.

I am struggling watching my son suffer.

I am alone.

No one really understands what I am going through.

No one really knows what it feels like.

And then I remembered....

...There is someone. Someone who knows what it feels like to watch His Son suffer the unthinkable. Someone who could take the pain away but didn't because he loved us more.

Quinn is God's son.

He feels the same pain I feel as he watches from above.

This story helped me remember that in my mortal state i am doing ALL that I can possibly do.

And after that, God will comfort his babies. He loves them even more than I do

{which is hard to believe}.

He will protect them because He CAN

He will take away their pain because He Can.

He will send angels to be with them...because he can.

He will bring them home if the pain is too much for their tiny bodies to endure...

because he can.

And I....I have to have faith. I have to step aside and let my Father take care of his tiny child who he happened to send to me. He knows better than I do. He can do much more than I can. He is perfect and He will take care of him... perfectly. I will do everything in my mortal power to protect my child. I will go to the ends of the earth until this is over. I will not give up. I will stand by his side and hold him in my arms as long as he will allow.

And I believe that between Me and God...Quinn is in pretty good hands.

The Honeymoon is Over

Unfortunately there is something called a "honeymoon" period when on anti-seizure medication.

A brief period of time where the seizures cease; creating a false sense of hope

---and then---

they come back- punch you in the gut and leave you breathless as they cackle

Pretty sure that is what we just experienced.

I was really hoping this new medicine would help stabilize us but this morning proved otherwise.

I feel like I am constantly trying to accept the new norm...

If there was just something that was consistent, something that provided me with a little bit of foresight to know what to expect

...but no that would be too easy; instead we will just change it up every. single. day.

The only constant is change.

I am not good at change.

...and in the mean time I will just keep pumping my 3 year old with horrific drugs so that the neurologist can feel like he is doing his job.

Have I mentioned I HATE Epilepsy!

*it's been a long day...i'll try to be positive tomorrow