Well, this year marks the beginning of a new school adventure for our family- again.  Last year we tackled our first year of homeschool with a fourth grader, one in Pre-K, and a baby.  My plans were to continue all of that right on through this year, and we were going to add Classical Conversations to our regimen.  My plans were to get the girls involved with that group, to branch out to more groups and social events, and to embrace kindergarten and fifth grade with gusto.  My plans sounded great to me, they looked great on paper, and I was excited about how I worked it all out.

But, they were my plans- not God’s.  Much to my surprise, the end of the summer led us down a different path, to a different plan that God had in store.  I wasn’t thrilled about it, and I fought it hard, but His plans for this school year kept my bluebird home with me for kindergarten, and sent my oldest to charter school for fifth grade.  For the first time, she is in a full-sized classroom, not in a Christian environment, away from her mom, changing classes, and gaining independence.

I may not like it, but God doesn’t make His plans according to what we like.  Sometimes He asks us to step outside of our comfort zones.  Sometimes He stretches us.  Sometimes He asks us to release control, to place our children and our plans and our desires into His hands.  Sometimes it hurts and it’s scary… but it’s always best to go where He leads.

Emotions have run rampant this week… I had a few moments to reflect this week on where we are and where we were, and it’s been a lot to process.  Exactly two years ago I was in scary place, fighting for my marriage, facing unknowns and circumstances I didn’t know how to deal with.  Exactly one year ago, I was in the midst of a different battle, this time fighting for my daughter’s life- again, facing unknowns and circumstances I didn’t know how to deal with.

And now, here I am, living a completely different life, learning to accept new normals and learning to live with unknowns.  Yesterday I was faced with that reality as we took Harper to Duke for her check-up with the neurosurgeon.  It was a basic appointment with no tests or scans this time, just a physical exam of her head, check of her neurological signs, and questions for us regarding her development.  All in all it went well, but it was a stark reminder that our lives will never again be the same.

As the doctor examined my baby girl’s scars, it hit me that she will forever have those as a reminder of her fight for life.  While I rarely notice them anymore, other people do, and one day she’ll notice them and we’ll share with her the miraculous story of how she beat the odds.  As he quizzed me on her developmental delays, I realized that while I just see progress, outsiders may look at my seemingly perfect, beautiful baby and wonder why she doesn’t do certain things, particularly as she grows older.  As he reminded me that he expects her to be delayed, I felt anger well up in me, because I expect complete healing.  And as he spoke of all of the unknowns, all of the wait and sees, I had to accept that it is all completely out of my control.

Now we are back home, back to the days of balancing homeschool and three girls with very different needs and personalities… back to juggling the activities of the older girls with Harper’s therapy appointments… back to updating people on how Harper is doing and sharing her story… back to the pile of medical bills and phone calls with caseworkers and signing papers and care plans… back to this new normal that has somehow become our life.

It can be overwhelming.  It can be exhausting.  It can be frustrating and emotional.  But, at the very moment that I feel like throwing in the towel, when I feel like complaining and telling God that I didn’t sign up for this, He comforts me and reminds me that He designed me for this.  His plans are greater than any I could imagine, and His plans are for my good, and for Harper’s good.  And He has chosen to bless me far beyond anything that I could ever deserve.  So as I get back to the new normal and all that it entails, I also get back to a life of thanksgiving… back to seeing Him in every milestone Harper makes… back to cherishing every little moment that I have with her… back to accepting His plan with a grateful heart.

At the end of a crazy day, my emotions are all over the place as we face more uncertainty in various areas of life.  I could write on and on about all that we are praying over and thinking through, but I’m tired and it’s time to just pause…. to pause and look back on this day and all the many blessings that God poured out in the chaos of the day…

More vocabulary from Harper… her emphatic “NO” in response to my requests and questions, calling for “Rae Rae,” and chanting, “Mammy” for Grammy

Red roses and a box of trail mix from my husband on his way home from work… and the response he gave my firstborn when she wanted to know why- “Because I love her.”

An empty laundry basket (for a few minutes, at least)

A call with words of encouragement from a friend- and reminders of lessons from God

Hugs from friends in the hall (sometimes you just need a hug)

Prayers and support and encouragement from so many expressed through social media

Seeing my daughter love and be loved by so many and knowing that she isn’t just special to me

Snuggling with my two littles in the recliner, my lap overflowing

Sweet whispers and giggles of my older girls telling stories in the dark at bedtime

Anyone else out there feeling overwhelmed?  Pause.  Look for God in the small things… He’s there, covering you in love and grace every step of the way.

When granted a great miracle, it can be so easy to gloss over all of the “stuff” that comes along with it… the aftermath, the emotions (both good and bad), the guilt, the work, the weariness, the unknown.  These are things no one talks about when a miracle takes place, when prayers are answered, when we’re standing on the mountaintop.

But, those things are there.  Believe me, they’re there.  Our family has been graced with the incredible gift of our Harper Lynn, the baby girl that was not expected to survive, much less thrive.  We’ve gone through the pits of despair all the way up to the glorious mountaintop as God has enabled her to defeat the odds and become a living, breathing picture of His grace and power.  As her mom, I’ve held her close and watched her blossom into this joy-filled, determined little person.  I’ve heard the doctors and nurses tell me that she is amazing, that she is indeed a miracle.

Before I go any further, let me say that NOTHING diminishes that.  Nothing that happens with her will ever be able to undermine the awesome power of our God and the miracles that He has shown us.  Even if Harper were to never progress any further, His power and sovereignty would remain, and she would be a testimony of that.  I do not doubt that for a minute, and I am constantly aware of how amazingly blessed I am to be her mom.

I have been in awe of how far Harper has come.  She is so very smart, social, happy, and has an intense excitement for life.  I cannot help but be encouraged and feel God’s presence when I’m with her.  Yet for all of her progress, today the doctors had to sit me down and explain to me that we still aren’t quite there.  Harper had her yearly developmental check at the NICU clinic here in Wilmington.  It’s a great opportunity for us to meet with specialists and therapists and get our questions answered, and they spend time with Harper testing her on various areas of her development to see how she is progressing.

The visit itself tends to be emotionally draining on me as I sit down with the doctors who were there from the beginning and rehash Harper’s story.  We have to go back over the experience, her issues, the diagnosis… and while it is painful, there is great joy in holding her in  my arms as the doctors and specialists refer to her as an amazing miracle.  Today, Dr. D. told me that while he doesn’t often remember a lot about all of the babies that come in, he always remembers Harper.  He was there the day she was born, and he reminded me of how perfect she looked at birth despite all of the issues in her brain.  Then he proceeded to tell me that reading her chart beyond that day is like reading a horror story, and he can’t believe she is the same baby… and all I can do in response is to say, “God is good and we are blessed.”

Harper’s testing seemed to go well today.  Her growth is right on track, and she wowed them all with her infamous stink-face grin and mimicking everything they said.  She was happy and cooperative, and I was told that cognitively-speaking she is very advanced.  She thinks and understands and responds well beyond her age, and the testing actually took longer than usual because she was progressing several months ahead.  However, there was a big gap between that and her motor skill development.  Both her fine and gross motor skills measured well below what they should be.  This was a blow to Mommy because we were actually hoping to be discharged from all services after today.  The goal was for this to be the last appointment and for Harper to no longer require any therapies.  But, based on today’s testing and the opinion of three different specialists, we will continue with occupational therapy on a weekly basis, add weekly physical therapy back to our routine (after having previously been discharged), and follow up with the clinic in another six months again.

While this is in no way “bad” news, I found myself discouraged a bit after sailing so high for so long.  In my mind, we should be finished with this stuff.  It’s behind us, Harper is great, and I’m ready to move on to “normalcy” (whatever that may be).  I became selfish in wanting no more therapy or doctors, in wanting Harper to be considered “perfect” and “normal, ” in wanting things to go my way instead of God’s way.  And, if I’m being completely honest, with all of this comes a lot of fear.  There’s so much fear in loving and raising a child who has suffered neurological damage- there is so much to worry about, so much unknown ahead, so much that is unpredictable, so much that can go wrong so very quickly, and it can be terrifying.  But in all of my wants and desires and fears, I forgot to recognize whose child she really is.  I lost sight of whose life I’m really living.  It isn’t about me.  It isn’t about what I want or don’t want or know or don’t know.  It isn’t even about Harper.  It’s about God, and I need to align my will with His.  His plans are right on time and for our good no matter what they are, and it took today to remind me that He has already blessed us far beyond what we could ever deserve.  It’s time to embrace Him in the here and now, and live a life of praise and thanksgiving for who He is.

The year isn’t over yet, but so far 2013 has been full of heartache for so many.  I know every year is full of heartache for so many, but for reasons I don’t yet understand God has opened my eyes to so many tragedies this year.  As we spent our fair share of time in the ICN at Duke and the NICU at New Hanover, we saw so many moms and dads having to say goodbye to their newborns.  We sat and cried and prayed at the bedside of our baby, surrounded by other families doing the same thing.  My heart dropped with every alarm, knowing that it could be my child next time.  We listened with tears as the doctors told us time and time again they just didn’t know what the future would hold, and we watched them walk to the next family to share the same news.

We spent six weeks living in the Ronald McDonald House with older children who were fighting for their lives, who came to dinner with us in wheelchairs and wearing masks.  We walked the halls lined with tiles in memory of those children who lost the battle, slept in rooms dedicated to those angels.  We dined with parents who had been there for months, praying for miracles.  We all existed in this strange world of trying to hang on to hope and faith, of celebrating milestones and mourning set backs… a world in which the rest of the world no longer existed as we devoted all of our time and energy to a child held captive by tubes and machines, needles and medications.

And in the past six months, I’ve heard and read stories of so many friends and friends of friends who have lost children for various unexplainable reasons…. miscarriages, stillbirths, complications and disease, SIDs.  I hear these stories and pray for these families every day and weep with every loss, and I know that I should rejoice in the blessing of my miracle… but I catch myself guiltily wondering, “Why?”  Why did our baby make it while so many others did not?  Why did we get a miracle when so many others needed one?  Why us and not them?  Why them and not us?  I count my blessings with a guilt-ridden heart because I know that I can never be appreciative enough for the gift I’ve been given.  I know there are too many moments that I take for granted.  I know that I did not deserve such a miracle.  Yet He gave it to me anyway, and I cannot understand why.

And I’m reminded once again, that’s how God works.  Not one of us deserves His grace and mercy, His gift of eternal life, but He gives it freely anyway.  That’s the beauty of grace… we cannot earn it.  He has bigger plans, and His plans are for our good, not for our understanding.  He gives, He takes away, He gives more, He loves… and we just have to trust.  We trust because we serve a God so much greater than this world, so much greater than the troubles and sorrows and heartaches that we face, even when they engulf us in an ocean of grief.  We trust because of the hope He gives, even in the most dismal circumstances, that hope that does not disappoint (Romans 3:3-5).  I may never understand why some of us get amazing miracles while others suffer painful loss, but I trust the One who does, and I trust that His plans are always, always, for good.

Oh, my, where has five years gone?!  I still remember crawling into the doctor’s office, sick as a dog, eager for some relief of some sort, only to stumble out later in a daze after being told I was pregnant with my second baby (and no relief for the next 8 months, haha!).  She decided to have her own style from the very start, showing herself off full-breech and refusing to move and sending mommy off for her first cesarean.  She came out weighing 6 lbs. 15 oz., 19 inches long, head full of dark hair.  We named her Madison Blue (Blue after her great-grandma), not knowing how perfectly that name would fit our blue-eyed beauty.

She turned our worlds upside-down, making our family fuller, our days busier, and her sister a big sister!  She keeps us laughing with her nutty sense of humor, and has made me realize that children come out with a personality all of their own and it’s best to accept it and embrace it and try to channel it in the right direction if at all possible.  I get lost in her blue eyes, amazed by her sweet and giving nature, and my days are filled with joy as I listen to that infectious giggle and watch her dance and twirl and create… she is my free-spirit with the biggest heart, and I’m blessed to be her mommy.

In the past year I’ve watched my bluebird grow and mature from a preschooler into a little girl.  She went from the baby to being a big sister in a big way, and has embraced that role with full enthusiasm.  She’s eager to help, eager to please, eager to pray, eager to praise God, and makes me so proud every day.

Making memories for Halloween… We dressed the kiddos up in the costumes of their choice, then went to trick-or-treat in the grandparents’ neighborhoods!

My oldest girl, who wanted to be an Air Force soldier like her dad

My middle baby, an Indian “queen” (she was not satisfied with just being a princess)

And my youngest in her first costume!

Digging in the candy bowl at Grammy’s

Shocked that we let her have it!

And she dumped her candy in the floor and proceeded to roll in it.

No fall is complete without a photo shoot at the pumpkin patch!