Happy (Belated) Easter from Emma

Take One:

For those of you who get this sent to your e-mail, you may or may not have to go to the actual blog site in order to view the videos. Enjoy!

Take Two:

Bedtime prayers

Dear God, thank you for making the animals and thank you for making us and thank you for letting us have a good day at the zoo. thank you for your Son dying on the cross for our sins and for making him alive again! Amen.

11 months

Still a rollercoaster of crazyness.  Definitely more good days than bad and the bad don't seem to last as long.  Reflecting on a year ago.  We were beginning to realize that Chi's time was quickly running out. 

Miss you, brother.  I think you and Jackson would have been great friends.  I am sad that he never got to meet you.  Your sister still talks about you lots; makes her mama happy.  Today she talked about what toys you had in your bed at the hospital and how you liked when she played with you. 


I wonder sometimes if you can see us.  I hope you like the flowers we picked out for your grave.  Never got the chance to ask you what your favorite color is.  I can't wait to see you alive and healthy.  Praying you'll be one of the first to welcome me when I enter heaven.  You'll have to tell me all about it! See you soon.


Love, Mama.

a year ago...

It's hard to see the miracle of his life when you're grieving his death.

--words of wisdom from a friend.

 I cannot even begin to say how true that statement is. I don't even know where to begin.  So bear with me as I just write what comes to mind whether or not it seems to have any sense of direction.  I thoroughly dislike this rollercoaster that began as soon as Malachi was born.  There have been highs and lows throughout each stage--NICU, IICU, home, PICU, death, grief.  So much of me wants to be able to compartmentalize it all and systematically work my way through our Malachi story from the beginning--like that will help me make sense of it all.  Part of me wants to relish in every memory I have of my baby and soak it all in--the good and the bad.  Some of me wants to just entertain away the pain and try to "forget about it"--haha, yeah right.  I'm having a hard time discerning what God would have for me to do with all of this.  I most definitely feel the need to go back, not to relive and be depressed or to try to make sense of it all, but I need to glean all of the miracles and all the ways we saw God work in our lives.  Not just "focus on the positive", but attempt in some way to bring Him the glory through our little boy's life.  To remind myself it's okay to grieve, yet to do so with the hope of Easter--knowing Malachi is most certainly alive and well.

All of this is coming to a head because an idea popped into my head today. I thought, "Hmm... I wonder where I was one year ago today."  Thanks to blogging, I was able to quickly head back to last April.  This is what I found:

"Conference today with Malachi's Immunologist. Safe to say that the results from his initial bloodwork a couple weeks ago is not very promising. Please pray for peace as John and I speak with Dr. N. this afternoon at 3:30."

"Well, let's just say that the meeting didn't go quite as expected. There is just not a lot we can do right now."

"Tomorrow, they will begin a medication to temporarily suppress Malachi's current lymphocytes. This seems counterintuitive, but the lymphocytes are not regulated because of Chi's missing thymus. There is a good chance that the lymphocytes that are in his body, are still mine from when he was first born and they are now attacking his skin (just as if he were to have an organ transplant and his body rejected the new organ)."

"Basically, Dr. N (immunology) told us there is no worldy reason that our son should still be living, let alone be in any sort of "stable" condition...
...We can safely say that Malachi is only surviving because God has chosen to sustain him...
...All that to say, Malachi has come a long way and has already exceeded the expectations of many. However, he is still very much in critical condition...
...The most probable outcome is that Malachi will die of an infection before his first birthday--news that absolutely no parent is ready to hear...
...Medically, there is no reason that Malachi hasn't already been attacked by a fatal infection. God has a purpose for our baby and we are completely overwhelmed with the responsibility that comes with being a steward of His child."

There is so much about this time of year that my mind is not ready to grapple with.  The weather, the smells, the sounds.  Add to that a new baby who is getting more and more the size of Malachi when I last held him in my arms.  At times it's just completely overwhelming.  At this point last year I felt like God was preparing me. For what, I wasn't quite sure.  My weeks are still filled with plenty of ups and downs (which they would be surrounding a terminally ill child or a completely healthy one) but I'm learning.  I'm learning to accept my weaknesses and I'm slowly letting Christ fill the gaps and be my strength.  I know full well that I cannot move forward on my own.

Please pray for us in the next month.   May 25 is the day Malachi went home to be with the Lord.  Sorry for the randomness, but in a selfish way, I think it helped.

Because of Him.

 17 Now when Jesus came, he found that Lazarus had already been in the tomb four days. 18 Bethany was near Jerusalem, about two miles off, 19 and many of the Jews had come to Martha and Mary to console them concerning their brother. 20 So when Martha heard that Jesus was coming, she went and met him, but Mary remained seated in the house. 21 Martha said to Jesus, “Lord, if you had been here, my brother would not have died. 22 But even now I know that whatever you ask from God, God will give you.” 23 Jesus said to her, “Your brother will rise again.” 24 Martha said to him, “I know that he will rise again in the resurrection on the last day.” 25 Jesus said to her, “I am the resurrection and the life. Whoever believes in me, though he die, yet shall he live, 26 and everyone who lives and believes in me shall never die. Do you believe this?”

Because of Jesus, I live.  Because of Jesus, my son lives.  Because of Jesus, Malachi is no longer suffering in a hospital bed.  Because of Jesus, Malachi is ALIVE! Because of Jesus, I have hope.  Because of Jesus, I can know without a doubt what lies for me beyond this weary earth.  Because of Jesus.  

He is the Resurrection and the Life.  Martha was certain that she would see her brother, Lazarus, "on the last day."  Jesus was quick to correct her.  The resurrection wasn't a day, time, or place.  The resurrection was a person.  The Resurrection is Jesus.  Because of Him, we can truly live.

From our vantage point, Malachi died.  He was taken from us.  How short-sighted we are!  We are so caught up in our day-to-day lives here in this stage, we are quick to forget that our souls are eternal.  It's not over when we die.  We will exist forever.  It's up to us to choose life. 

Christ says--in His own words--to Martha then and to each of us now:

Everyone who lives and believes in me shall never die. 

Do you believe this?

Resurrection Sunday

 17 Now when Jesus came, he found that Lazarus had already been in the tomb four days. 18 Bethany was near Jerusalem, about two miles off, 19 and many of the Jews had come to Martha and Mary to console them concerning their brother. 20 So when Martha heard that Jesus was coming, she went and met him, but Mary remained seated in the house. 21 Martha said to Jesus, “Lord, if you had been here, my brother would not have died. 22 But even now I know that whatever you ask from God, God will give you.” 23 Jesus said to her, “Your brother will rise again.” 24 Martha said to him, “I know that he will rise again in the resurrection on the last day.” 25 Jesus said to her, “I am the resurrection and the life. Whoever believes in me, though he die, yet shall he live, 26 and everyone who lives and believes in me shall never die. Do you believe this?”

 

Because of Jesus, I live.  Because of Jesus, my son lives.  Because of Jesus, Malachi is no longer suffering in a hospital bed.  Because of Jesus, Malachi is ALIVE! Because of Jesus, I have hope.  Because of Jesus, I can know without a doubt what lies for me beyond this weary earth.  Because of Jesus.  

 

He is the Resurrection and the Life.  Martha was certain that she would see her brother, Lazarus, "on the last day."  Jesus was quick to correct her.  The resurrection wasn't a day, time, or place.  The resurrection was a person.  The Resurrection is Jesus.  Because of Him, we can truly live.

From our vantage point, Malachi died.  He was taken from us.  How short-sighted we are!  We are so caught up in our day-to-day lives here in this stage, we are quick to forget that our souls are eternal.  It's not over when we die.  We will exist forever.  It's up to us to choose life. 

Christ says--in His own words--to Martha then and to each of us now:

Everyone who lives and believes in me shall never die. 

Do you believe this?

 

 

Here are some pics from our day:

Emma's buddy, Tyson.

Family Pics

With cousin Kelden.

 "I will eat his foot!"

Sales 101

Today at Half Price Books...

Emma: (walking up to John with an item in each hand)  Daddy, which one of these do you like best?

John: (pointing at item A)  I think I like that dinosaur one.

Emma: Well... I like the truck one... So, yeah, why don't we just go ahead and get both?

a song i'd like to sing for you...

There are a few songsI would LOVE to sing as "special music" at church... but, really, you wouldn't want me singing in any public arena SO i will leave you with a prayer of mine titled "Your Hands" by JJ Heller: 

I have unanswered prayers.  I have trouble I wish wasn’t there.  And I have asked a thousand ways that you would take my pain away. Oh, you would take my pain away.

I am trying to understand how to walk this weary land. Make straight the paths that crooked lie. Oh Lord, before these feet of mine. Oh Lord, before these feet of mine

When my world is shaking, heaven stands. When my heart is breaking I never leave your hands.

When you walked upon the earth you healed the broken, lost and hurt. I know you hate to see me cry. One day you will set all things right. Yeah, one day you will set all things right.

When my world is shaking, heaven stands. When my heart is breaking I never leave your hands

Your hands that shaped the world are holding me--they hold me still.

CHARGE friends

Mr. Gannon here is a year older than our little man Malachi. His mama caught me in the hallway at Riley Children's Hospital in the first month or so of our stay there.  Visitors were very limited due to hospital policy during H1N1/flu season and the general visitor policy for the NICU.  Our company mostly consisted of other parents who were in the hospital with their little ones. I've been truly blessed to get to know this mama both in and out of the hospital. Gannon has definitely come a long way and still requires around-the-clock medical attention, but I absolutely loved watching him climb all over their living room furniture, signing "please", wanting to play with his big brother and Emma, stopping to pose with me for a picture, and waving to himself as we reviewed the pictures on the camera.  Every milestone is definitely a celebration with CHARGE kiddos and I love that Sara lets me kind of rejoice with her in the accomplishments of her Gannon!

window to the soul

behind...

...on my Bible reading.

...on chores (although, i got a great jumpstart with the tidying up today).

...responding to friends' notes of encouragement (i really do appreciate you).

...sorting through and organizing papers.

...reading books I want to read.

...writing down all these thoughts swirling in my head.

...unpacking the mound of totes sitting in the study.

...incomparable Christ study.

to name a few.

Gifts 26-50

26. For Gods written word.
27. That God is willing to endure the effect of sin on His creation so that more might be saved for eternity.
28. Gloomy rainy days.
29. Hearing Emma call me 'mama'.
30. That the design of marriage reflects that of Christ and the church.
31. Emma's memories of Chi, even though she was only two (as long as they last anyway) .
32. Johns selflessness toward me.
33. That John doesn't allow me to wallow in self pity.
34. Friends to sit with at CARE.
35. That John finds me very attractive.
36. Hives, and the humility it brings before an awesome God.
37. Listening to John's tales of Princess Emma before bedtime.
38. Bookcases filled with books.
39. The ability to smile after facing death--knowing Christ conquered the grave.
40. Comments people make on the blog.
41. Knowing that Jackson can see his mama.
42. A sleeping baby and preschooler--at the same time.
43. No more subfloors! All rooms are now functional/livable.
44. Reminders of Malachi (even though I have to choose gratitude)
45. Emma's imagination and referring to us  as King John and Queen Marissa.
46. The flexibility of being a stay-at-home wife.
47. A God-given desire for adventure--possibly China?
48. Warm Spring air.
49. Machines to aid with washing clothes and dishes.
50. That tears tend to help with the pain.

The full list is on the 1,000 Gifts Tab toward the top of the site.

The Chasm [Review]

Definitely an allegory worth reading! Lately I've really enjoyed reading Randy Alcorn as of late. Fiction, nonfiction, allegory--all of it. This book, The Chasm, is really an adaptation of the more extensive novel Edge of Eternity. I would love to eventually sit down and read the extended version, but The Chasm definitely gives you a taste of the entire story. Acorn does a wonderful job of opening the readers eyes to the unseen spiritual battle being fought all around us. The story of Christ's redemptive work on the cross and the internal struggle of man before coming to the point of repentance is so completely unfathomable in my mind that I loved exploring Alcorn's take on the matter. A great read! If anyone else out there reads this book, I'd love to hear your thoughts too!



I received this book for free from WaterBrook Multnomah Publishing Group for this review.

role playing

Emma likes to declare what everyone needs to pretend to be...

Okay, I will dress up to be Mary; Jackson can dress up to be Joseph; And Daddy can be baby Jesus; Yeah, that sounds good.

The deal was that if Emma took a good nap, we would go to the playground when she got up. Well, little miss never actually took her nap. This was her response when she came out of her room...

You know, I don't think I want to take a walk to the park today. Yeah. We should do it tomorrow.

update in pics

Cuddling with his monkey.

Cuddling with his daddy.  Are you sensing a trend?

Sneak peek at the flooring in the main living areas (this was to be posted a while ago.. oops).

In the "study"... unpacking books.

This room will have four bookcases and the L-shaped desk with hutch :)

...and this is what the living room looked like.

Our little Herky (the hawkeye) doesn't seem to mind the mess...

 Loving this picture.

All ready to go for the Butler game!

Makes this mama happy.

the only section of wood flooring yet to be laid...

Okay, so the pile of totes and things yet to be unpacked are now in the study.

And I'm crazy giddy about this color scheme for our dining/living room and study... 

...crazy giddy.

Today was 50% off storewide at Goodwill and I scored this for 1.50 for my husband.  I'm sure we'll find a place for it... somewhere.

Rolodex

I was out shopping with Jackson, John opened his phone to call me...

Oh, do you need mama's number? I can go get it for you.

R-E-S-P-E-C-T

I'm assuming that even seeing the title of this post has you humming the catchy tune and envisioning Aretha belting it out.  Not only was "RESPECT" made a hit in 1967 and solidifying Franklin's status in the R&B movement, but it quickly became an anthem song for the feminist movement. 

What many of us don't realize is that the lyrics were actually written by a man as a plea for recognition and respect from his lady.  Who knew right?  I am honored and privileged to try to fulfill this role of wife to John, commanded to love and respect him and all he does for me and our family. I'm still learning.  It takes work to move my focus from me to him.  It's hard and sometimes unpleasant--mostly because I'm a sinner.  Thankfully, God's not done with me yet.

So... here you have it.  The original lyrics by Otis Redding 1965:

What you want Honey you've got it

And what you need Baby you've got it

All I'm asking Is for a little respect when I come home

Do me wrong Honey if you wanna

You can do me wrong Honey while I am gone

But all I'm asking for Is for a little respect when I come home

Hey little girl, you're so sweeter than honey

And I am about to just give you all my money

But all I'm asking, hey Is a little respect when I come home

hives with a side of humble pie

One of the things I hate about my sin nature is that it makes me completely egocentric--solely focused on myself.  Throughout our time spent in the hospital with Malachi, at times I felt complete dependence on our Lord for strength.  My supply was completely depleted as soon as they whisked him out of the delivery room struggling for each breath. I am so thankful that God provided strength and clarity of thought in abundance from the very beginning.  Unfortunately, I can't say that I permanently learned from that experience that I could fully trust Him--for everything, including strength. 

I had never gotten hives before we were beginning the process of bringing Malachi HOME.  There was so much training and check-offs that needed to be completed so that we could provide for Malachi's medical needs at home.  Our dining room would quickly turn into an ICU--ventilator and monitors included. I started leaning on self. You know, "I can do all things through Marissa who gives me strength..."

Scripture is very clear on this matter:
    Thus says the LORD: “Cursed is the man who trusts in man and makes flesh his strength, whose heart turns away from the LORD...
    "Blessed is the man who trusts in the LORD, whose trust is the LORD."

 (Jeremiah 17:5, 7 ESV)

Well, recently, I once again noticed these itching, agitating little bumps over my arms--the same place as before. It made me hurt.  Instead of reflecting on the many joys and miracles we saw at the hospital, I became bitter with nurses that failed in my book to properly do their job.  I started getting angry with God for taking my son away.  It became hard for me to look at Jackson because he's physically getting to the same point that Malachi was when he died--the clothes, certain looks, etc.  I was getting nowhere except depressed.

I was stressed. Clearly, these stupid hives were a physical manifestation of all this pent up emotion and, well, stress.  I knew I was in the wrong.  I was placing my trust, once again, in self.  I asked for forgiveness. God, faithful to His word, was quick to forgive and I was made new.  John could testify to the difference in me from Friday even to Saturday--nothing short of a miracle! 

God has not changed.  Malachi is in the radiance of His glory.  I can grieve--it would be foolish to say I didn't need to our couldn't--but, I can grieve while reflecting hope and the glory of my Savior.  God's Word will come to pass.  The moment it was spoken/written it was sure to come to fruition.  I have been renewed, yet one day I will be completely sanctified.

    "Not that I am speaking of being in need, for I [am learning] in whatever situation I am to be content. I know how to be brought low, and I know how to abound. In any and every circumstance, I [am learning] the secret of facing plenty and hunger, abundance and need. I can do all things through HIM who strengthens me. "

(Philippians 4:11-13 ESV)

hives with a side of humble pie

One of the things I hate about my sin nature is that it makes me completely egocentric--solely focused on myself.  Throughout our time spent in the hospital with Malachi, at times I felt complete dependence on our Lord for strength.  My supply was completely depleted as soon as they whisked him out of the delivery room struggling for each breath. I am so thankful that God provided strength and clarity of thought in abundance from the very beginning.  Unfortunately, I can't say that I permanently learned from that experience that I could fully trust Him--for everything, including strength. 

I had never gotten hives before we were beginning the process of bringing Malachi HOME.  There was so much training and check-offs that needed to be completed so that we could provide for Malachi's medical needs at home.  Our dining room would quickly turn into an ICU--ventilator and monitors included. I started leaning on self. You know, "I can do all things through Marissa who gives me strength..."

Scripture is very clear on this matter:
    Thus says the LORD: “Cursed is the man who trusts in man and makes flesh his strength, whose heart turns away from the LORD...
    "Blessed is the man who trusts in the LORD, whose trust is the LORD."

 (Jeremiah 17:5, 7 ESV)

Well, recently, I once again noticed these itching, agitating little bumps over my arms--the same place as before. It made me hurt.  Instead of reflecting on the many joys and miracles we saw at the hospital, I became bitter with nurses that failed in my book to properly do their job.  I started getting angry with God for taking my son away.  It became hard for me to look at Jackson because he's physically getting to the same point that Malachi was when he died--the clothes, certain looks, etc.  I was getting nowhere except depressed.

I was stressed. Clearly, these stupid hives were a physical manifestation of all this pent up emotion and, well, stress.  I knew I was in the wrong.  I was placing my trust, once again, in self.  I asked for forgiveness. God, faithful to His word, was quick to forgive and I was made new.  John could testify to the difference in me from Friday even to Saturday--nothing short of a miracle! 

God has not changed.  Malachi is in the radiance of His glory.  I can grieve--it would be foolish to say I didn't need to our couldn't--but, I can grieve while reflecting hope and the glory of my Savior.  God's Word will come to pass.  The moment it was spoken/written it was sure to come to fruition.  I have been renewed, yet one day I will be completely sanctified.

    "Not that I am speaking of being in need, for I [am learning] in whatever situation I am to be content. I know how to be brought low, and I know how to abound. In any and every circumstance, I [am learning] the secret of facing plenty and hunger, abundance and need. I can do all things through HIM who strengthens me. "

(Philippians 4:11-13 ESV)