02 October 2010

Dear Ewan

Dear Ewan,

You are two weeks old today. As I write this, it is almost to the hour you were born. I remember the agony my body was in as I prepared to birth you, and the agony my heart was in in knowing what meeting you for the first time would mean: I wouldn't be able to protect you anymore. I wouldn't be able to keep you safe as I had for the previous 37 weeks, and I wouldn't be with you anymore -- not in the same way. I knew I would miss your movements: the kicks and punches that were evidence of your life.

I was mentally prepared for what would come: I cherished the minute that they placed you on my chest and I held you, studying your face, looking deep into your eyes. I knew you. I recognized you. I like to think you recognized me, too.

And then they had to take you away.

Even as I have no regrets in choosing to bring you into this world, I hate what you have suffered on account of it. In your fourteen days on this earth, you've suffered more than most people I know who have lived many years. None of it is fair, and I won't try and explain that away. Your dad and I have suffered watching you endure all you have: multiple invasive procedures, an open chest, tubes running in and out of you, and our absence. I think even the most hardened person would have to agree: this is not how it's supposed to be.

I spent a good hour or more with you this morning. I had just finished pumping and I went down to see you. I had no questions for the nurses, though they did tell me you had behaved well and had wakeful periods through the night. I was more interested in feeling the hair on your head, in studying the sweet softness of your fingers and toes. There isn't much of you I can touch, but where I can, I do. I hope you know how much you are loved, how I would do anything to make you well, how much I wish I could just give you my own heart to make you well. I know I wouldn't hesitate.

Your dad and I are doing the best we can. We know we need our rest to make good decisions for you, and yet it is so hard to leave your side, especially when you open your eyes and look at us. We want ours to be the faces you see.

None of us knows what will happen in the coming days and weeks. We are fighting hard for you, advocating for you and probably annoying a lot of people in the process. And that's okay because this is to do with your life and it's worth it to ruffle some feathers and be not liked in the process -- I can't stand the thought of wondering later on if things could have been different had we not been too worried about being compliant and polite. We are the people you came from, so don't you worry about being compliant or polite either. Don't be afraid to surprise people with how well you can do, and don't be afraid to make a big stink if that's what you have to do.

All that being said, your dad and I recognize what a delicate and tenuous situation this is. Minute by minute, life here in the CICU is unpredictable at best. We desperately seek your well-being and are ready to take you home and wrap you in all the love we have the minute we can. But please know, dear one, that if you need to go Home, that's okay too. You've been baptized and anointed, you are our son and our brother. And though a baby, you have had a powerful impact on so many -- your broken heart has reached so many others. You might not even know it, but you are changing the world and we are so proud.

I pray for you, sweet baby. I pray that angels whisper in your ear how much you are loved, and I pray that you feel safe and protected. I pray that you can feel their kisses since we cannot kiss you. We know you continue to fight, and we will continue to fight for you. Sweet baby boy, you have stolen my heart. It will never be the same.

All the love in the world,


Lisa said...

oh my Kirsten. such beautiful words.

praying for you and James and Ewan today as I have been each day for the last two weeks. Praying for peace, and wisdom and strength and comfort, for the nearness of Jesus to be overwhelming.

much love.

Mindi Allen said...

I am crying and praying for you and your family. As a former NICU mom with a critically ill child, I know some of what you go through.

Be strong little Ewan. You are loved.

To his dear mommy, I am so sorry you are going through this. No words will make it better. I'll continue to pray and think of you.

christianne said...

Tears. And so much love and reverence.

Erika said...

absolutely beautiful! So many prayers and lots of love being sent to you. for your little boy, continue with the minimal rest you and James are receiving. you need lots of strength to be strong for your lil' man!

Sarah said...

Oh friend! Someday I want to tell you the story of how I know what I'm going to say next and why I hold it as one of the most profound facts about this world. This isn't the time or the place, though; for now, I just want to say that Jesus holds the babies, the tiny and the small, in a way that most of us big people won't let him hold us. I know you know this, too, but I want to say it as well: Ewan is held, better and tighter than any of us can ask or imagine. Small comfort, I suspect, to your mama-heart, but maybe something to store away to take out and look at later. I can't know what it's like to be where you're at right now, but I can know that I love you there. Praying all day.

Caleb said...

Dido Christianne's...

Joy Elsner said...

Kirsten and James - I cry as I read your beautiful letter to your son. My heart aches for you all. Know that my prayers and love go out to you always.

Renia Flaishans said...

Just "Beautiful"

Our thoughts and prayers are with your family, the nurses, and the doctors.

The Flaishans Family

Anonymous said...

I sit crying because of the ache I have in my heart for Ewan and your family. May you be surrounded by peace and love in the days to come. Know that Heaven is being stormed with prayers from our house.

Hold on to hope, sometimes it is all we have left to cling to.

Shannon Egan

Unknown said...

You don't know me but I want to thank you for sharing your story with the world. I can't imagine the pain you are in, yet to see to handle it with grace and faith. i am sure you have your moments :). Kristen, I am praying for YOUR heart. As a mom, mine is breaking for you. I am praying for your sweet boy as well too. I am praying that this time next year, you will not believe the change in him. I am praying that in 10 years he will impact his peers for Christ. I am praying that as an adult, he will impact the world for Christ. God bless you. I am sending you the biggest cyber hug imaginable from the East Coast. God bless you, mama.

Shay said...

beautifully written. the immense love you have for Ewan is evident with every word you write and with every touch you give him. My heart is breaking for you and many, many prayers are lifted up on your behalf. love you lots!

Anonymous said...

I have been reading your posts all week and after reading your letter today I feel I need to write back to you.
I have been praying for you, your husband and baby Ewan. And I feel every word you write. My daughter has HLHS she is 14 months and has had 4 open heart surgeries and 7 cardiac catherizations. It is unbearable to see your child go through what your son has gone through. But he is still fighting so stay strong and fight with him. I had times in the day and still do when I feel like I just cant see my child go through any thing else. But then I think about how hard she has fought to get where she has and I know I have to continue to stay strong. Continue advocating for your little warrior and I will pray for strength for all of you.

My love and prayers are with you,

Michelle Waller

Molly said...

That was truly one of the most beautiful things I have ever read... my heart breaks for you and your family and for that precious Ewan. Thank you for being brave enough to share this story so that so many of us can pray for you. God Bless You.
Lee, Molly & Annalee Huff

Anonymous said...

There are no words. Know that I continue to pray for and with you.
Blessings and Peace and Love,

Sheila Palaruan said...

I heard you on Ave Maria radio several days ago, and I want you to know I've constantly prayed for Ewan, and for your family. In each prayer that I say, he will be remembered. I, in a sense, understand what you are going through. I recently lost my first child, a daughter, when I was 20 weeks pregnant. It made me feel so helpless as she struggled and passed away. Please don't despair, or lose hope. God is always with you, and there are miracles, EVERYDAY. Keep fighting for Ewan. He knows how much you love him. May God bless you--and Ewan--with ongoing strength and courage.

Stefenie said...

Gentle tears are falling right now after reading this. Beautiful Kirsten. {{{HUG}}}

Ewan knows how very much he is loved. Trust me he knows. Every little touch, soothing voice and comforting nuzzle from you he can feel that love. He doesn't have to be held to know that he is HELD.

Praying for all of you!!!

Tea said...

...This is a beautiful letter to your little one.
My love to you.
praying. <3

Judi Dalton said...

When good grapes are pressed in a winepress, sweet wine is produced. When saints are pressed beyond measure in a trial, Jesus is made visible. Dear sweet Kirsten, I see Jesus in you.

Anonymous said...

We stopped by the cemetary for the first time since we buried our twin girls Emma and Sophia. We cried and asked them to watch over their brothers in the NICU as well as Ewan.

With love, prayers and hope

Kimberley said...

what a blessing to read this sweet letter to your baby boy.

he is precious in his sight!

i continue to lift up sweet Ewan and pray for his healing and for comfort for mama and daddy.

Rebecca said...

Kirsten, you move me to tears with the tender love and fierce gentleness with which you write. Your love for Ewan and for God have been such an example. You are a beautiful mama.

I pray that Ewan can feel the arms of our Savior cradling him in that tiny hospital bed. And, that you and James feel those same arms holding you as you walk through this deep valley.

Wayne and Sue Rasmussen said...

Kirsten & James,
Our prayers continue to be with you as you love on your little son. Mommies are well known for fighting for their children, as it should be. However, as others have said and we know you already understand, our Father in heaven holds Ewan in the palm of His hands. His will is always the best. Trust in Him ...
Sending love your way from Indiana.

kristen said...

My son is about to go under OHS in the next coupl weeks and he too has problems with his pulmonary veins. I don't think anyone knows what we go thru. Sending you and your family hugs and peace.

terri said...

your heart and your words are so beautiful. you made a lot of people cry over here today. we love you. little ewan is in many good hands.

oh, and what sarah said...

ANewKindOfPerfect said...

Ewan has stolen my heart as well. You are in my prayers!

Anonymous said...

God knew what he was doing when he made you Ewan's mommy. Praying...

Papillon Sky said...

Oh Kirsten,
My heart aches for you. What a beautiful letter to your son! He is so loved. I am thinking of you and praying so hard for your family!
Much love to you!!

Papillon Sky said...
This comment has been removed by the author.
Anonymous said...

Dear family,
I don't know you but have been following your blog. I'm a friend of Emily Pardy. Your story is powerful and has moved me. I am praying for your baby boy and that the GOOD Lord will give you strength peace and comfort during this time. I'm praying for a miracle. God IS with you.

Ingrid's Organic Body Care said...

we sang this song together tonight and thought of you. our family continues to bring your needs before the throne of God. Also, at risk of sounding strange, I continue to think that I am thankful that ewan's little heart made it all those months in your womb; that you got to meet your son and hopefully raise him to a grown man!

Children of the heav’nly Father
Safely in His bosom gather;
Nestling bird nor star in Heaven
Such a refuge e’er was given.

God His own doth tend and nourish;
In His holy courts they flourish;
From all evil things He spares them;
In His mighty arms He bears them.

Neither life nor death shall ever
From the Lord His children sever;
Unto them His grace He showeth,
And their sorrows all He knoweth.

Though He giveth or He taketh,
God His children ne’er forsaketh;
His the loving purpose solely
To preserve them pure and holy.

Lo, their very hairs He numbers,
And no daily care encumbers
Them that share His ev’ry blessing
And His help in woes distressing.

Praise the Lord in joyful numbers:
Your Protector never slumbers.
At the will of your Defender
Ev’ry foeman must surrender.

if you are not familiar with the tune here it is: http://www.cyberhymnal.org/htm/c/o/cofthehf.htm

unzen said...

WOW, I am in tears. Praying

Anonymous said...

I am not sure what I can say that would be helpful, but please know that I am keeping your son in my thoughts.

I have a son who was born with TOF and is doing well now. His case was not as severe as your sons, judging by what you have posted, but I would never give up hope. Miracles happen all of the time.

Have you all thought about getting a second opinion? We dealt with Boston Children's and they were fantastic. I believe they are ranked #1 in the world. Perhaps the treatment plan would be exactly the same, but it's just another thought.

Love to you all, especially sweet little Ewan.

Anonymous said...

My mom told me of your sweet son after her radio show last weekend...I have been glued to team ewan.com and have had you and your precious family in my constant thoughts and prayers. Your strength and words are so powerful and filled with the Holy Spirit...thank you for your witness and inspiration. Our first son had life-saving surgery at 4 days old...it is pure torture. God has great plans for your adorable son. I will continue to pray for a miracle and peace in all of your hearts. I can only imagine how much the Blessed Mother is looking down on you with shear joy and love...your faith and strength are palpable...just like hers. With love and prayers, cf

Leslie said...

Thinking of and praying for you all.

SA Bizzz said...

From a mother to another mother... Yes Ewan is changing the world and he is making us mommies who have perfectly healthy babies more greatful for the blessing of a healthy baby. I can not imagine your agonny just the thought of my baby girl being in your little boy's situation tears my heart.

Ewan is in my prayers and thoughts and I pray that he will get stronger and that God will grant him the miricle of complete healing. Lots of Love Jaclyn

Anonymous said...

Carrie Johnson past a prayer request on to me about your dear Ewan. I am praying for God to reach His hand and touch Ewan and perform a miracle. I know that God's plan is perfect and that everything has a purpose. Sending constant prayers.

HennHouse said...

When we sat down for lunch--the table overflowing with waffles and fruit--as is our custom, we held hands and prayed. Tim thanked God for the food, our family, and our blessings. His voice cracked as he walked right up to the throne of God and laid your family at the feet of Jesus. I could not contain the tears. Neither could he. We love you all, and we ache for the desires of your hearts... to hold your son. To feel his sweet breath on your faces. To witness a miracle.

Know that we will continue to pray. And love.

Anonymous said...

Another St. Joe's family praying for you since we first heard Father Bryan pray for you. Your blog is beautiful Kristen - our hearts ache that you are all having to suffer like this. God bless you both and sweet little Ewan.

Kaari said...

Prayer Warriors. Team Ewan supporters. Ewan could use your help again. Ewan has an infection and his lactic acid is rising, meaning the antibiotics are not kicking in as they would like. So we need your intercession right now. PLEASE PRAY!

Tom & Beth said...

you are all in our thoughts & prayers. You are amazing parents and are so lucky to have had this time with him- and I'm hoping with all I have that you will have much, much more.

Stay with that little boy as much as you can- a mother's touch is an amazing thing. Cherish him.

Anonymous said...

Kaari I just saw your request. Prayers are being offered up that Ewan can overcome this infection. Oh, God, please rain Your loving Mercy down upon Ewan and his mommy and daddy. I have never met Ewan and never will, but my heart just aches for this little soul. Please allow him to know what life is like outside of a hospital room. And if You do decide to call Ewan home, please grant his family the strength to get thru such a life altering moment.

Be blessed Ewan, be blessed.

Shannon Egan

Baby McMinn said...

I can not imagine the stress and the heartbreak you are going through now. We have a son and it breaks my heart to see Ewan struggle. We go to PDBC in Abilene know that your family is in our thoughts and prayers daily.

Anonymous said...

Dear and good Kirsten and James,
Just to say, your beautiful witness to life and to the Author of Life is truly edifying for all of us. You are buried in the heart of Jesus, as He sees every tear and hears every supplication. Know that I will ask for more intercessory prayer for Beautiful Baby Ewan's complete recovey and for his brave Mommy and Daddy. God is in control and truly in the middle of your suffering. His grace will be tangible. If you possibly can, please let us know on Tuesday's Open Line how things are. No worries, it is understandable if you cannot. 800-585-9396 In the meantime,know that our entire family is keeping you in mind, heart and prayer. Much love! God keep you, Barbara

Devin said...

Hello, I am a friend of Nancy Ellis' (Rebekah's mom) and I wanted to let you know I am praying for you, as obviously so many others are. I can't imagine this difficulty that you are facing, but am thankful that I have a Heavenly Father to take my petitions to on Ewan's behalf.

Love to you and your sweet boy....