Wednesday, November 28, 2012


So I came across this old notebook while looking for some paper. I'm thinking it was during a brainstorming session I had early 2007--shortly after we were married. For those of you who don't know us that well, by 2012 we have owned two homes, become debt free, and birthed FOUR children. Oh the naïveté of my 20-yr-old self.


Mommy, can you call daddy and tell him when he's on his way to the teens tonight that he could maybe stop by cubbies and tell them "Emma can't be here tonight because her tooth is really hurting her..." Yeah, that way maybe they won't miss me so much.

Monday, November 26, 2012

"Playing" nap

About twenty minutes after telling John he was just "playing nap", we found Jackson in the loft no longer just playing!

Monday, November 19, 2012


Jackson, is that yummy in your tummy?

No, yummy on tongue.

Thursday, November 15, 2012

When it comes out of nowhere

Most days are good days now. The grief isn't quite so consuming. However, I feel this makes the pain almost worse. It's like the first year following Malachi's death was a dull ache--always near, consistent, and reassuring me that he was really gone (well a dull ache combined with the horrific pangs of sorrow and the exhaustion of life with a newborn). But that dull ache became like an ever-present companion. It was my new normal.

But then life seems to get busy and God brings you out and gives you new life once again. And the dull ache isn't so constant. So then when the pain comes its like a tidal wave. You've gotten used to not kicking your legs every moment to stay afloat and now you're about to go under. I am thankful the I have a husband who is quick to be a lifesaver, throwing me a rope of faith, reminding me Who is in the creating and sustaining of the storm.

I don't know what my normal is these days. I struggle with the ups and downs of life as a wife, a mom of littles, and the grief of my two babes no longer here. There are days of good, days that are easy even. And there are hard days. There are days like today where I'm all of a sudden hit with a blog or Facebook post that tries to shake my faith. I will not let myself become bitter about what I don't have. I will do my best to rejoice with families who have reason to rejoice over their littles.

Malachi was diagnosed with what is referred to as CHARGE syndrome--he had all kinds of internal physical deformities that came along with that. The first five months of his life were a fight to fix nose, heart, lung, and esophagus issues to ensure survival. He fought hard. He was making progress. He was later also diagnosed with DiGeorge syndrome--our baby didn't have an immune system. The only way to possibly rectify this issue was a thymus transplant. There is one little boy who had gone before Malachi with both charge and DiGeorge that I had been aware of. There is only one place where and one doctor who performs this experimental surgery. This little boy received a thymus transplant and is doing better than anyone could have hoped or expected. His mom posted a message she received from this doctor with good results they received from his latest t-cell tests. His counts are in the top quarter of all her patients at this time! What a miracle!

Unfortunately, my first inclination wasn't rejoicing with this family. It was bitterness because this same doctor denied us the chance for this operation. How despicable I am! Because this doctor is performing this procedure in such a pioneer fashion, really the first of its kind, she only will move forward with it on patients who are most likely to survive. Malachi was still requiring a ventilator for respiratory support and would also require another open heart surgery in the months to follow. God closed the door.

And because it is God who ordains the every days, I will trust Him. I will fight my battle with Satan who wants me to doubt God, to doubt His goodness, to doubt His truths--the very bedrocks that helped me persevere through Malachi's life in the hospital. I will not give up that fight. I will pray for strength to rejoice in the little (and big) victories that I see these kiddos and families take part.

Monday, November 12, 2012

The Chicago bears

Emma: Hey look! The C's are playing!

some quotes from this a.m.

Emma:  Jackson, get your dirty hands off Sissy!

I had just ordered some play money that was semi-realistic so that we could use it for school.  Today we were counting with pennies...
Emma:  okay...but when do we get to use the CASH!

...and it's only 9:30a.m.

Friday, November 9, 2012

thankful for music

I'm sorry my mind is all over the place.  Without writing I find it difficult to keep my mind focused.  Thoughts just keep spinning and spinning, but I can't make sense of much of it.  It's awful really.  I like feeling mentally sharp and it seems like that's the first thing to go when I'm all of a sudden overtaken with grief. Because of this, I am also thankful for music.  I'm thankful that others can put into words what my soul is trying to proclaim--and it helps that they do it much more eloquently than I would.  I think I have over 100 songs on my Malachi playlist, the following are chunks of lyrics from the most recent three...

One of the verses my friend Jenny encouraged me with in the beginning of Malachi's life was Isaiah 26:3 "You keep him in perfect peace whose mind is stayed on You because he trusts in You."  This song brings to mind this very real encouragement--this promise--that I saw God remain faithful throughout Malachi's life and death...
Sometimes it's hard to keep believing in what you can't see. That everything happens for a reason, even the worst life brings.  If you're reaching for an answer and you don't know what to pray, just open up the pages.  Let His word be your strength and hold on to the promises. Hold on to the promises. Jesus is alive so hold tight, hold on to the promises  (Sanctus Real--Promises)

I wish I could say all my questions have been answered.  But I know they won't be.  I hate that we live in this sin-cursed world, though I'm thankful that it's temporary.  Some people tell me that all of our questions will be answered when we get to heaven.  However, I don't know if I agree with that.  I don't really think my questions will matter when I get to Heaven.  I think that the reason I have questions now is because I doubt God's goodness.  It's like I "need" to know these answers because when all is stripped away I doubt God's goodness.  However, I know God's Word to be true.  I know that He is good.  When the curse of sin has been lifted, I think my questions will be gone because my doubts will be gone.  I don't know if I'll have the understanding that I long for now, but I don't know if that longing will persist.  There's my two cents, for what it's worth.  I also know that I'm still here.  There are still many good works for me to accomplish in my time before the curse of death removes me from this world...
"Why?" The question that is never far away. The healing doesn't come from the explained.  Jesus please don't let this go in vain.  You're all I have, all that remains.  So here I am-what's left of me-where glory meets my suffering...
I'm alive, even though a part of me has died. You take my heart and breathe it back to life...Breathe. Sometimes I feel it's all that I can do. Pain so deep that I can hardly move.  Just keep my eyes completely fixed on You. Lord take hold and pull me through...
When mercy takes its rightful place and all these questions fade away.
When out of the weakness we must bow and hear You say "It's over now"...
Jesus come and break my fear, awake my heart and take my tears. Find Your glory even here when the hurt and the healer collide.  (MercyMe--The Hurt and the Healer)

And finally, there's this song.  Every time it comes on the radio, I really feel like the writer was reading my innermost thoughts three years ago.  Isaiah 26:3 challenged me keep my mind stayed on God, therefore I needed something about God to fix my mind on.  God was gracious to me and the Holy Spirit continually played in my mind the following attributes of God:  He is good, He is faithful, and He is true.  I want to be remembered as one of God's faithful ones who rested in the promises of God and praised Him even when my children die and even if my healing never comes. 

Sometimes all we have to hold on to is what we know is true of who You are. So when the heartache hits like a hurricane, that could never change who You are. And we trust in who You are, even if the healing doesn't come and life falls apart and dreams are still undone. You are God, You are good, forever faithful One--even if the healing doesn't come...
Lord we know your ways are not our ways, so we set our faith in who You are.  Even though You reign high above us, You tenderly love us.  We know Your heart and we rest in who You are...
You are God and we will bless You as the Good and Faithful One even if the healing doesn't come.  (Kutless--Even If)

Thursday, November 8, 2012

A crinkling wrapper

Jackson: Who wants candy? I do!

You would have been three...


 It's me.  Your mama.  I miss you.  I go through spurts where I see God truly changing me and making me strong in my faith, and in those moments I am thankful.  I am thankful for the tangible moments of seeing God work in and through your life as well as seeing Him work in and through me in your death.  I wish I could say right now is one of those times.  Right now, I hurt.  I ache.  I long to hold you and take care of you and just love on you because you're my son.  

 Your daddy is pretty awesome.  I'm sure you know that.  I know he hurts.  I know he would have done anything possible to take your pain, even if that meant suffering himself.  He does a great job protecting and providing for his family.  I should thank him more than I do.  He's so strong for me when I'm weak.  He doesn't judge my grief and he goes above and beyond picking up the slack I leave behind during times like this.  

 I was pretty heart broken during the entire month of October.  Sometimes I wish your birthday was at the beginning of the month so that I didn't have the 27th looming over my head all month long.  See, three years ago my life was completely turned on its head.  We were so excited to meet you.  Did you know that we were going to name you Jackson David?  But before you were born, that name just didn't feel right.  Malachi is one of your daddy's favorite old testament prophets and Stephen is daddy's favorite new testament character apart from Jesus.  I am thankful for that gift of grace, even just in settling on your name which means "crowned messenger of God."  

 Sorry, little man.  I think I need to end on that note.  I'm trying to remain faithful and I'm trying to keep it together, but I really miss you.  I hate that you're not a part of our "home family".  Your sister does a great job reminding others about you.  Even though you are not considered a member of her "home family", you are a part of our "whole family."  Your brother recognizes you now.  Even just today he was playing with a card that one of your nurses "helped you make" for Emma's second birthday.  There is a picture of you inside.  He brought it to me and said, "Baby Chi, sleeping."  I'm sorry that you spent most of your days in an awful hospital bed.  What is life like for you now?  I wish I could see.  I'm trying to learn about Heaven, but it's hard for me to wrap my feeble mind around.  I'm starting to get an idea of what our future home on the New Earth will be like, but what is it like where you are NOW?

 Please know you are loved.  You are missed dearly.  Tell your sister, Jordan, hello and that we love her and wish she was here as well.  

 Love, Mama

Friday, November 2, 2012

August Pics

It was really hard to give Belle back after almost a week with our old pup!