Happy Birthday Ellie!

Tomorrow my sweet girl turns 7.  She came into the world in a flash and changed ours that quickly as well.  Who is she?  What is she like?  Ellie Kate is a big personality stuffed inside a petite little body. She loves fiercely and you never have to question where you stand with her.  She loves everything girly and everything magical.  She dreams big dreams and believes anything is possible.  I love this about her.  I don't want to tell her that unicorns aren't real and you can't be a princess who lives in a castle when you grow up.  I especially don't want to dash her latest dreams of using a horse as transportation for her and her cats.  She'll find out soon enough but for now--I want to let her believe for as long as possible.  Ellie is strong, independent and determined.  She doesn't take no for an answer. She marches to her own beat and has her own style-which usually involves one of the following; a dress/tutu, boots, tiara and accompanying jewelry.  She doesn't do what everyone else does--only if she wants to.
We have had some significant challenges this year: in May our lives changed forever when she woke up with a hot swollen knee, limping and crying in pain.  Fast forward through a lot of specialists to June when she was diagnosed with Juvenile Arthritis.  Immediately she began medication but we had to become more aggressive with treatment when we found out later that month that her eyes were also affected.  The leading cause of blindness in children is uveitis--the inflammation in her eyes caused by her arthritis.  This required us to begin weekly Methotrexate injections on top of the additional medications.  Methotrexate is a low dose chemotherapy drug.  So you can imagine the side effects are not fun to deal with--especially for a child.
Suddenly our lives went from the calendar being filled with playdates to a calendar being filled with specialist appointments and trying to plan our calendar around when she would feel good enough to have some fun.  It has been a complete game changer for our family and I struggle to think of one aspect of our lives that hasn't been affected.
I believe that everything happens for a reason.  I have no idea of the reason for her arthritis.  She has had to learn to live and push through pain at the age of 6.  One thing that I do know is that the personality that we have seen in her since birth has helped get her through this first season.  The determination and strength will continue to push her to go on when days are hard.
One thing that has brought me encouragement is clinging to Psalm 139--and I love The Message translation of it-- the fact is that this diagnosis was no surprise to God.  He knew we would face this day on the day she was born.  With that in mind--He also knows the entire journey up ahead.  He knows how her story ends.  I pray that He helps me to be the Mom she needs---especially on the hard days.
We look forward to what her 7th year of life will hold.  What new interests will she have?  Will she start any new hobbies?  Will we see even more of her personality and character take hold?  It is a blessing to be her parents and watch her blossom.  In good times and in hard times.
Happy Birthday Ellie Kate!  You are loved and cherished beyond measure!

Psalm 139The Message (MSG)

A David Psalm

139 1-6 God, investigate my life;
    get all the facts firsthand.
I’m an open book to you;
    even from a distance, you know what I’m thinking.
You know when I leave and when I get back;
    I’m never out of your sight.
You know everything I’m going to say
    before I start the first sentence.
I look behind me and you’re there,
    then up ahead and you’re there, too—
    your reassuring presence, coming and going.
This is too much, too wonderful—
    I can’t take it all in!

7-12 Is there anyplace I can go to avoid your Spirit?
    to be out of your sight?
If I climb to the sky, you’re there!
    If I go underground, you’re there!
If I flew on morning’s wings
    to the far western horizon,
You’d find me in a minute—
    you’re already there waiting!
Then I said to myself, “Oh, he even sees me in the dark!
    At night I’m immersed in the light!”
It’s a fact: darkness isn’t dark to you;
    night and day, darkness and light, they’re all the same to you.

13-16 Oh yes, you shaped me first inside, then out;
    you formed me in my mother’s womb.
I thank you, High God—you’re breathtaking!
    Body and soul, I am marvelously made!
    I worship in adoration—what a creation!
You know me inside and out,
    you know every bone in my body;
You know exactly how I was made, bit by bit,
    how I was sculpted from nothing into something.
Like an open book, you watched me grow from conception to birth;
    all the stages of my life were spread out before you,
The days of my life all prepared
    before I’d even lived one day.

Blackbirds

We just returned from a family vacation to Hilton Head.  It was truly a wonderful time.  Truly.  Sometimes we have this Norman Rockwell picture in our head and then it doesn't go as planned......trust me when I say we have had our fair share of those vacations.  Kids get sick, fight constantly, miles of traffic....but this time things were honestly amazing.  Yet I walk away missing my girl quite profoundly and that makes me feel a bit guilty.  I am so blessed......with an amazing family.  I have a healthy son and daughter.  We have fun and enjoy our time together.  Still there is this shadow of an older daughter not present.  I must not be the only one who notices because Ellie, my youngest, has been drawing Callie in her family pictures lately.  It makes me smile as I think of how much she would have loved to have a big sister.  I would have loved for her to enjoy the special bond between sisters that I share with my own sister, Emily.

We enjoyed a vacation to the same beach when I was pregnant with Callie.  We dreamed of bringing her with us the following year.......and we do return with our family and memories of her.  Each time it brings back memories. 

While we were there my husband bought me a picture that I had been eyeing.  It has a bird on a branch with the quote: "Blackbird singing in the dead of night, take these broken wings and learn to fly."  I realize it is quite an old and popular song but the meaning struck me when I first saw it.  What does it mean to me?  Nighttime is an awful time for a grieving person.  We are plagued by the darkness and stillness of the night.  We lie awake to re-live our fears, our memories, our pain.  The hustle and bustle of the daytime easily drowns these out but at night we are forced to surrender ourselves.  So this blackbird obviously is awake and singing (which sounds quite haunting and annoying all at the same time).  He has been hurt and suffered some sort of trauma causing his wing to break.  In order to fly again he will have to allow some time for his wing to heal.  When he is finally ready I'm sure he is going to have to re-learn some things and endure some pain.  He'll still fly.  He'll still see some magnificent things.  It just might be different than he imagined.  

It sounds a little bit like grief, doesn't it?  We suffer the unimaginable and yet somehow, after a period of time, we have to summon our strength and learn to fly again.  We have to live life and move forward even when it hurts.  Life may look different than we anticipated but it's still a beautiful and blessed life.  So fly, little blackbird, despite the pain and hurt.  Actually the very next line in the song adds even deeper meaning... "all your life you were only waiting for this moment to arise."  I'll leave that for you to think on.....

Through All of It

I was listening to the radio and heard a song recently that summarized the state of my heart lately.  One of the lines "I've seen joy, I've seen regret, And you have been my God through all of it."  Wow.  Truth.  The days of infertility-longing for a baby and seeing one negative pregnancy test after another.  God was with me.  The joy and elation of finding out about a baby, learning she was a girl, naming her and preparing for her.  God was with us.  (And I believe and sensed he was preparing us all along the way.)  The fateful day we heard the bad news. God was with us.  Delivery. God was with us. Burial. God was with us. Going through our home to pack away all of her things.  He was with us.  The pain and emptiness.  He was with us.  Pregnant again.  God.  Scared.  God.  Delivery.  God.  NICU.  God.  Out of options.  God.  Miracle.  God.  Bringing home a healthy 1 month old baby boy.  God was with us.  Sleepless nights.  God was with us.  Laughter and joy.  God was with us.  And it goes on.  He has been with us and given us the strength to get through each season of our lives.  Every blessing and every heartache has been sifted through His hands.  He hasn't changed.  He hasn't forgotten about us.  He has been our God through all of it.
October is another month that brings Callie up nearly every day.  It's painful.  It hurts.  And sometimes I feel lower than I'd like.  Yet God is faithful as always.  It is always my hope that I have been softened by her life and will one day impact other lives in a way that points them to Him.

Hope

Nighttime has always been the hardest time of day during my grief journey.  In the initial weeks after we lost Callie I remember doing everything I could think of to avoid going to bed.  I knew that as soon as my eyes closed my mind would go into overdrive.  Memories, thoughts and fears would paralyze me.  At some point I would pass out and the cycle began the next day.
This continues to be true although it doesn't happen every night.  A few months ago I closed my eyes to sleep and suddenly found myself right back at that doctor's appointment.  It was as if I was watching myself from dream.  I could again feel the hopelessness and despair.  In an instant I can see the sorrow on the faces of the doctors and nurses.  I see the hurt and confusion in my husband as he reaches out for my belly.  I see the pain and strength in my parent's eyes trying to be strong for me and yet hurting for their daughter.
I remember laying in the hospital for days in labor waiting for Callie to be born.  I kept dreaming and praying that everyone was wrong and we could still keep her.  But that isn't our story.  My heart aches for that naive young girl.  I wish I could go back, wrap my arms around her and whisper "you have no idea how wonderful life will be", "you can't imagine the little ones in your future", "God will redeem this."  I had no idea then, in my pain and brokenness, the plan God had for our family.  We never do.
Now don't get me wrong--I miss Callie with every fiber of my being.  I think of her daily and wish she could be a part of our earthly family.  But when I trusted God and His plan and that He had our future in His hands, I never imagined how good life could be, even after the pain.  It's amazing to look back now and see the blessings He has given us, in spite of our hurts.
I have felt it impressed on my heart to write this blog post for awhile now.  Maybe it's to encourage you that whatever you are going through--He has a plan.  It's hard to see now but if you were able to get a glimpse of what's around the corner, you'd be amazed.  Does it seem like you will  never get through this phase of colic?  Does the pain of losing someone ever get easier?  Are you waiting on God to speak to you about something?  Do the test results seem scary?  Will God provide that job? Will the money come in to pay the bills?  I don't have the answers but I do know that God has never let us down once.  There has been pain.  There have been trials but through it all, He has net let go.  I don't know about you but I am anxious to see what God has for us around the bend.  So today if you are in the valley and feeling low, listen for God.  Can't you hear Him?  He is saying  "I am making all things new." (Revelation 21:5)

Questions

    Seven.  What would my daughter be like at age seven?  Would she be missing her front teeth?  Would she love gymnastics or maybe dance?  Would she love pink, purple, unicorns and rainbows as much as her little sister?  It's hard to imagine and yet I find myself longing to know.  I wish my children would have known her as more than their sister in Heaven.  I wish I could have seen them playing together and yes, even fighting together.
    Today I drove through the mountains to Pennsylvania to visit my parents.  It was a majestic sight and a glorious reminder of our smallness.  As I drove a rather profound thought or vision came to me.
Go back with me 7 years ago to the night before I delivered Callie.  My husband and I lay in the hospital room crying and pleading with the Lord to heal our baby girl.  We knew that with one touch, one word--even a single thought---our God had the power to defy the findings of the ultrasound.  He had the power to touch her body, inside mine, and make her whole.  Well, you know our story......... her healing on earth wasn't part of His plan.  I can honestly tell you that I haven't been angry with God--from day one.  I haven't blamed God--from day one.  And I think you know I would tell you if I did either one.  However I have always wanted to know why.  I don't understand why God chose to not heal her.  I have always figured that would be the one question I would ask God when I get to Heaven.       Over the past 7 years I have learned to live with the unanswered questions.  I'm okay with those on this side of Heaven, because I understand that His ways are not like ours.  A classic picture of this is that I think that in Heaven it will matter.  It won't.  I'll say it again.  When I get to Heaven it will not matter why she died.  It won't matter if God healed her.  I will be in the presence of Jesus Christ, my Savior and Lord.  My sweet girl has been there her entire life.  She took her first steps on the streets of gold.  Danced her first dance recital in the presence of our King.  I am sure that whatever color she likes best is far more wonderful in Heaven and the rainbows must be spectacular.
     So I would say that today, for the first time in 7 years, I am okay with NEVER knowing or understanding the greatest question of my life.  God doesn't owe me a explanation.  He is God.  And I am not.

Playing with Callie

I will be quite honest with you, I am dreading the next couple of weeks.  It isn’t because my husband leaves on a mission trip for a week and it isn’t because there aren’t any fun plans.  There actually are some great things on the calendar.  But the one thing that over shadows them all is my firstborn’s birthday.  Yet, it isn’t just her “birthday”, it is all the days leading up to and following that flood my memory.  It seems like another life in some ways, and in other ways I am still paralyzed there on that ultrasound table.   The memories that haunt me are almost too much to bear, and if you’ve experienced loss you understand this all too well. 

Some of you know our custom of celebrating Callie’s birthday.  We have always been determined to “celebrate” and to have a family time to continue to allow our kids to learn about their older sister.  Last year it was horribly tough.  It ended up with all of us in tears as the kids thought Callie would be coming to her birthday party.  So this year I decided we would go to Chuck E Cheese.  Am I crazy?  Yes, maybe.  But they have never been and have always wanted to go.  So we are going to go and have a good time as a family.   It helps for us to have something to look forward to and focus on and also allows for us to tell her story.  As the kids grow older, though, the questions get harder.   “How can Callie make a wish for her birthday?”  “We want to get Callie a present.”  It honestly is hard to hold back the tears at times.

Today the kids were playing in the play land at Chick-Fil-A with a little girl and her stuffed otter.  Her mother called out to her “Callie….”.  My heart stopped.  Did I hear her right?  “Callie….”.  Yep.  I heard the name that is so dear to my heart.  The kids said good bye and we got in the car to head to Target.  Corban and I began talking and he mentioned that the little girl he was playing with was Callie.  Like his big sister.  “Mommy, is Callie big or little?”  “Well, she would have been 6 on her birthday.”  The backseat grew quiet, which is unusual.  “Mommy.  I wish she would have stayed when she was born.  Then she could be here for her birthday party.”  I couldn’t hold back the tears this time, and I began to cry behind my sunglasses.  “me too, buddy.”  “Will we ever get to see her?”  I was at a complete loss, so I said “yes, honey, one day we will all be together in Heaven.”  Now he was crying.  He doesn’t want to die.  He doesn’t want to leave his stuffed animals and toys.  He doesn’t want to miss out on peanut butter and hot dogs and pop pops.  And who will live in our house then?  He was inconsolable for a good while but then Matt talked to him and somehow got him calmed down. 

I understand his feelings.  I wish she were here, too.  I hate celebrating a birthday without her.  I don’t understand the Lord and His ways, yet I know His great love.  I have experienced firsthand His grace and peace.  So while I would love to go ahead and turn the calendar page over to next month a little early, I press on.  That is what I am called to do. 

“The happiest place on earth is not on this earth.  This life is never going to fill us, is never going to satisfy our need for goodness.  And it doesn’t need to.  He is enough.”  Mended  by Angie Smith

“Behold, these are but the outskirts of his ways, and how small a whisper do we hear of him! But the thunder of his power who can understand?” Job 26:14 

A Walk Down Memory Lane

Well, my son, turned 5 a few weeks ago.  I can't believe how much progress he has made this year.  I was recently going through pictures and videos and was truly amazed at how his speech has improved.  I know that every child is special to his parents, yet Corban is beyond special.  After losing Callie the doctors had encouraged us to wait around 3-6 months before trying to have another baby.  We didn't want to wait and be pregnant at the same calendar time as we had been before.  It had taken a long time to get pregnant with Callie and we figured it would take a long time again, so we decided to begin trying.  I can't begin to express the joy and fear that surrounded us when we found out we were expecting again.  It was a long pregnancy and I felt as if I were holding my breath during the entire thing.  I saw my doctor weekly and had ultrasounds at each visit.  I remember the first ultrasound that revealed we were having a boy.  To be completely honest, for a second I was disappointed.  I desperately wanted to have another little girl.  But after the words came out of the tech's mouth, she showed us a 3D picture of his little face, and I fell in love.  The pregnancy was fairly routine and we scheduled a c-section for 37 weeks.  Since Callie died at 33 weeks, they didn't want to push me too far in the pregnancy and lose this baby.  Everything looked good on his ultrasounds and we were ready to have this little guy!

The morning he was born was one of the most bittersweet days of my life.  I remember laughing and joking with the doctor through his delivery, hearing him cry and breathing a deep sigh of relief.  He was here and breathing.  The next 8 hours or so are a blur to me.  A blur without a baby.  He needed to be observed...he needed this....he needed that.......and there I was stuck in my bed waiting for the spinal to wear off.  Finally, a doctor came in followed by our family and said a bunch of stuff that I honestly didn't understand.  What I did understand was that he would need to stay in the NICU for 24-48 hours.  They brought me a picture of him and I waited until late that night to have my bed wheeled into the NICU to see him.  Not hold him.  Just to look at him.  It just plain stunk.  No way around it.  It didn't look much better the next day.  We were able to go in-2 at a time--to see him but every time we talked to him his numbers dropped and his oxygen levels went down.  If you are a NICU parent, you understand that night time is often a bad time and when you awake you learn bad news.  I woke up on Mother's Day with very bad news that they were going to have to hook him up to a ventilator because he was not improving.  We made the first executive decision as his parents.  We decided that we wouldn't allow any visitors.  We knew our family and friends wanted to see him, but he was so sick and as I mentioned, he declined whenever there was any stimulation.  We agonized and second guessed ourselves, but it was what we had to do.  I didn't think about it at the time, but as I look back, I realize that this was only the beginning of the "tough calls" we would have to make. 

As time has continued and he has grown older, we continue to have to make those tough parental decisions. I mentioned that he just turned 5, which means he is old enough to go to Kindergarten next year.  However, we are choosing to keep him in preschool for one more year.  We feel that one more year to receive speech and occupational therapy both in school and through a private practice will benefit him tremendously.  It has not been an easy decision.  But we have made the decision we feel is best, after praying about it and talking about it.  So as I have gone through these past few weeks, reflecting on the life and accomplishments of my son, it has been a good reminder to me.  The things that are so big and weigh so heavy on us, will be a mere memory as we look back on their life.  I don't say this to make light of things, for I know how hard we love!  But what I am saying is this:  My prayer is that one day my children will trust us and our discernment with the decisions we made and if they don't, that they extend us grace in our short comings and recognize our love and heart above all.
Today was Corban's last day of school.  I am so proud of him and how much he has overcome!  I can't wait to see what one more year brings.