Journaling to remember

I was reading through some old blog posts and was cherishing the memories I wrote down so much that I was inspired to write again. This is a journal for me and my children. Their eyes lit up so much when I read them old posts and when the girls asked for their stories it broke my heart that I have written so few of them down. Life got busy, and my thoughts about life sometimes too intense and deep to really want to write down. But I'm going to do it for them, because I love seeing them smile when they hear an old story about themselves!

Rebekah has just learned to crawl this week, after learning to pull to stand in her crib last week! I feel like those two steps were backwards, but being only a week apart she basically learned to do both skills at the same time! It is such a quick transition from a four or five month old who can barely just sit up alone, to a seven month old who can stand and crawl! Ahhh I just want my babies to stay little a little longer! But of course these little milestones are always so exciting, and Rebekah has her own little pep squad cheering her on with each new accomplishment. The kids all truly love having a baby in the house.

Rebekah still does not have her first tooth, but a top tooth is just about through. I don't believe we've ever had a baby get a top tooth first! She is also one of our latest teethers. Noah was around 7-8 months when he got his first tooth but everyone else got teeth a little early than that, more like the 5-6 month range. Anyway, I love the gummy smile and it ok by me when they come in later!

I am so excited to report on the little summer experiment that has been underway at our house, and report what a blessing it has been to our whole family!

I decided in June that we had way too much stuff around the house that I was expecting the children to keep clean and organized.  More clothing than we needed, too many dishes and cups, and too many toys!

So, first I boxed up toys and put them away in the attic, being especially careful not to have too many toy items down at a time that have many small pieces, like Legos. I also got rid of a lot of battery powered toys that don't hold the kids attention for very long anyway, and end up annoying me anyway! Toys like wooden blocks, a wooden train set, and matchbox cars are being rotated, so they don't lose interest in them, and then they don't have the raw materials all out at once that are needed to make a huge, jumbled mess! When I bring a "new: box of toys down from the attic that they haven't seen in a month or two, they feel like it's Christmas!

Then, I put away extra cups, plates and bowls, leaving only one for each child. This makes it so there is literally only one dishwasher load of dishes available to dirty in the kitchen!

Finally, I allowed two pairs of short, three shirts, one set of pajamas, and one swim short and shirt for each child.

What has occurred over the last few weeks, has been nothing short of amazing! Now, I am sure some of you are light-years ahead of me, and have never allowed excess child paraphernalia to accumulate in your home! I salute you! For myself, however, I had allowed stuff to start stealing my joy! Stuff was causing my frustration over messes that were overwhelming for even me to clean up, much less my children!

Letter to a Senator! YOU can make a difference!

Please copy and email the letter below to Emily_Katz@boxer.senate.gov
Please cc: DMDAction@gmail.com


Dear Senator Boxer,

As your constituent, I am writing to ask that your health staff attend an important briefing this upcoming Friday, February 7, from 10:00am-11:00am in 334 Cannon House Office Building.  The briefing will feature a preview of an upcoming documentary on the lives of boys who suffer from Duchenne Muscular Dystrophy (DMD).  It will also include a brief presentation from a panel of renowned Duchenne researchers and scientists as well as DMD parents on opportunities to accelerate approval for the first-ever approved therapy for DMD using the tools Congress provided the FDA in the Food and Drug Administration Safety and Innovation Act (FDASIA), which was signed into law in 2012.

I am the relative/friend of Noah, boy with Duchenne Muscular Dystrophy, the leading genetic killer of children that affects about one out of every 3,500 boys born in the United States.  Duchenne has a 100 percent fatality rate and there is no approved treatment.  A boy diagnosed with DMD around the age of 5 is expected to experience a loss of muscle strength that leads to confinement to a wheelchair by adolescence and a short life assisted by ventilators.  This progressive deterioration leads to death in the late teens or early twenties.

Congress granted the FDA special authorities to accelerate approval of promising treatments for diseases just like DMD that are rare, orphan and fatal.  We face a pivotal moment where a decision could determine whether our child is part of the last generation to die from DMD or among the first generation to live. 

I know there are many demands on your time and on your staff’s time, but I am hoping you will be able to make time for this briefing to help Noah and so many more boys who have no hope unless our government acts to advance promising therapies. I ask that your staff please attend the briefing on Duchenne Muscular Dystrophy on February 7th from 10:00am-11:00am in 334 Cannon.  Please let me know if you will be able to attend by responding toDMDaction@gmail.com.

Sincerely,

Springtime....

Sweet Eliza!  5 months old she is!  No teeth to speak of yet, but they are making their way!  She didn't sleep much today, and she is so very drooly!  She is just so sweet, and she is always on my hip.  I enjoy her so much, and feel so blessed to have her in our lives.  She weighs in at 14 pounds 5 ounces give or take, and 24.5 inches long.  She has not yet tried any food, but is just breastfed.  Will probably let her have some other foods in a month or so.  I am not planning to do puréed food this time, but will offer her small chunks when she can get some in her mouth, until then mamas milk it is!
She has been loving grabbing, biting and sucking on her toes and feet for a good 6 weeks now, which is one of my favorite baby milestones!  I find it totally adorable!
She has soft fine strawberry blonde hair and big blue eyes, sweet soft skin!  She has a few pink stork bites still.  Her 4 brothers are over the moon for her of course.  It is so neat seeing their hearts for babies and I like to think being around babies will help develop in them a love of children,  That is my hope. It sure melts my heart to see how much they love her, and each other.
Eliza sleeps in her crib about half the night, wakes to nurse and then spends the rest of the night tucked in close to me in our bed.  She only nurses back to sleep in the night usually, and does not usually fall asleep while nursing during the day, which is a mystery to me why she doesn't like to!  Very different than Caleb!  He still wants my milk before falling asleep and in the mornings!

Micah and Levi are sleeping very well at night now, and are getting into less mischief in the night and early mornings.  They usually do not nap, but will if I have them lay down. They have always needed a lot of sleep.  They both are quite string willed, but have the softest sides to them as well.  Levi very much wants to please.  They both are shy as well.  Micah still loves his blue blanket so much.  Levi is our adventurous eater.  All three big boys can ride bikes without training wheels, they all learned last summer.  The twins are very fast, Noah is slowing down on his bike now, which beaks my heart.  Caleb is so very energetic and full of life, riding so fast with his training wheels, reminding me everyday that he's a bug boy! He tells me this all the time! His hair is so so blonde, and his curls are precious!  I won't cut them off!  Each one of them I love so much.  Can't imagine if we hadn't had any of them.  So glad we gave our family over to God.  He has planned it so perfectly.  Life is overwhelming at times, but so so sweet and precious.  My heart is overwhelmed by live for them.  I want them to know how much I love them, and that they details of their young lives imam trying to sear into my mind forever.  I take pictures to remember, and I desperately want to hold on to the happy details of their childhoods.  I feel guilt when I miss writing down the dates of some of those milestones, but know I watching them pass with my eyes wide open.  I am here for each one that passes, I get to be with you all day everyday, and that brings me great joy.

That day

Our world came crashing down when I self-diagnosed Noah with Duchenne muscular dystrophy on February 4 of this year.  Devastation is an understatement.  Those first moments when I realized that he had this disease were truly horrific.  Alone in our bathroom, face on the floor, sobbing, I knew I was in the midst of a moment that was changing my life.  I told myself aloud, that this was "it", the moment of knowing, where the veil is pulled back, and you can never go back to the life you knew before.  I've been having a lot of those moments this past year.  Heaving and sobbing hours later as I told Nick and then my mom and dad, I just kept repeating "I'm so sad, I'm so sad".  I can't write this without recalling and having the same feelings bubble up, which is why I haven't written a word of this down until now.  The weeks that followed were a blur of doctors appointments, and grief.  Overwhelming grief, the kind where you don't care about much anymore.  Of course my kids are what made me go on, my love for them and the fact that they need a strong mama who can show them what it means to cling to God when walking thru fire.  Try as I might, I could not help torturing myself with every detail of this disease, and everything it would take from my son.  Sickness in my heart beyond compare.  Wanting to get away from that mental pain, but finding it a constant companion.  I cried out to God and He would give me relief, peace, sleep.  Getting out of bed crying in the middle of the night only to crawl into bed with Noah and wrap my arms around him, weeping for him, thinking about his deep peaceful breathing and imaging a time when his very breath would be hard to come by.  These moments of despair were tempered with moments of peace beyond explanation, knowing God is in control and has Noah's life in his very hand.  Knowing our God makes all things work together for good.  Believing these truths about God even more so then ever before in my life.  Storms in life do not change who God is, and knowing that He has known about this "turn" in our lives forever is of great comfort to me, he is not surprised by it.  He hems us in, he goes before and behind us, and knowing this soothes me.
And in the midst of this was our sweet children, our sweet newborn daughter.  Unspeakable joy in the midst if unspeakable pain.  The deep realization that God gives to us so freely his blessings, that we should appreciate them, and cherish each moment.  God timing is impeccable, and seeing the joy he gave to us in the middle of such a hard time spoke to me volumes about his love and compassion for us.

Today Noah has two doctor appointments.  He is seeing a cardiologist, and will get an electrocardiogram, which is a sonogram of his heart.  He will also be seeing a neurologist, who would potentially be overseeing his use of steroids if we decide to use them.

The fact the we need to see these two doctors today is still mostly unbelievable, and confirms further the reality that his DMD diagnosis is real, and that our boys heart needs to be monitored at such a young age, as well as nearly every other system in his body.  Very soon he will also need to see a doctor in pulmonology, who will monitor his lung function.

My own heart breaks a little more on days like today, and yet at the same time I know how blessed we are to be able to give him the best care available.  This disease has a rate of about 1 out of 3500 throughout the world, and my heart breaks for the many boys out there who suffer without any care at all, or poor care.  There is much to be thankful for.

It's been a month now, and while the shock has worn off a little, I still find myself crying quite easily.  The world now holds different meaning than it did a few weeks ago.  Scripture, songs and sermons are now seen in a different light.  The thing is, I know with all my heart, that the light I'm seeing is now clearer than it was before.  Life has been distilled down to what means the most.  I am able to focus my eyes on eternity so much easier, and I know that is exactly why God allows these things to occur in the lives of believers.  Our suffering isn't worthless, it isn't meaningless, it is so very valuable.  Priceless even.  I know we have so much to learn, and a hard road ahead of us, but I refuse to prevent God from using this for his purposes, which I know are good.

The depth of our despair is deep, but God's love is so much deeper, and He is revealing himself to us everyday.  I am in constant amazement at the conversations I am having with Noah and our other kids now everyday.  The places I am easily finding to speak to them about eternity, and the ONE thing that truly matters in life, is astounding!  I am finally seeing and understanding what God means when he says to speak to your children about Him when you rise up, when you lie down, when you walk by the road, and now it is easy!  That alone is enough of a blessing from this situation.  Our kids will know that the things the world thinks are important, are not.  Beauty, athleticism, intelligence, wealth, worldly success matter not.  We are now desperate to convey that to them, as all parents should be.  But now we are forced to teach our kids that accepting Christ and furthering His kingdom is ALL that matters, and for this my heart is a so glad.  We will not sit on the fence, we will not be lukewarm, and if this is what was needed to ensure our children and our family will all be together for eternity, I happily accept it.

I almost feel ridiculous writing here after so much time has passed and so much has happened, but I'm just going to anyway!

We have a daughter!  Eliza Jubilee Swavely was born December 3, 2012.  I will write her birth story soon and post it.  In the meantime, before I forget a few things:

Birth: 7lbs 5oz
1 week: 8 lbs even
2 weeks: 8lbs 10 oz
3 weeks: 9lbs 2 oz
4 weeks: 9lbs 11oz
5 weeks: 9lbs 15oz
6 weeks: 10lbs 6oz

Our girl is a growing machine...3 pounds in 6 weeks!