Monday, May 13, 2013


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.

Wednesday, March 6, 2013

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.

Tuesday, January 15, 2013

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!