What Goes Up Must Come Down

Your adoring brothers

Well, I knew it was a matter of time.  As Isaac Newton has said...what goes up must come down.  While this reference is related to the law of gravity, I believe it is also relevant in our situation.

 
As of today's writing, Everly is a whopping 51 days old, just over 7 weeks of age and weighs in at 6 pounds 1/2 ounces.  She has brightened each and every day, shown us how to live and be in the moment and has given us unsurmountable joy.  Not one of us can walk by wherever she is without pausing to kiss or speak to her.  The house is littered with toys, play mats, blankets, oxygen tanks and the occasional syringe or stethoscope.  Our world, simply put, is complete with her in it.  It's comfortable.  It's whole.

But we know.

We know but we push aside those thoughts and worries about tomorrow.  Unfortunately, as much as we do that, with each doctor appointment they so casually bring those fears to the forefront.  Not so much out of callousness, I would dare to guess, but more so out of the nature of their "business" and duty.  So, while we may enter the day and the doctor appointments with positivity and optimism for the future, we are quickly reminded the limitations of those hopes and dreams.  With each passing day, we are more hopeful.  With each doctor visit, we are more grounded.

But we continue to hope.

 

Chillin' with big brother.

As we travel this road, we are cautious of our expectations.  Not only for our own sake but for the sake of our two boys who might not understand the gravity of some of the decisions we must make.  There's no manual handed out at the hospital that goes along with this diagnosis, there's no right or wrong.  We each must do what we think is best and it does get harder because you aren't sure who to trust.  I pray for discernment in choosing physicians.  I pray for clarity in making decisions.  I pray for strength to make it through tough days.

 Hanging with biggest brother!

 So, my friends, what goes up must come down.  That includes our emotions, our "good" days, our everything.  We love celebrating each day...the sun on her skin during our daily walks, the way she gazes up at us, her warmth as she presses into our chest.  We love celebrating her funny facial expressions...the way she squints her eyes as she enters the bath water, the way she scrunches up her face when she's unhappy, her calm face as she rests in the middle of the night.  Yes, we do enjoy every single moment.

But, some days when news comes at you, hopes are diminished, realization strikes, fear moves in...it is hard.

We are human.

We have all trust and faith in God that we are wrapped in His protective arms.  We know His plan is perfect.  We know that good will come.  Lamentations 3:25 tells us that: "The Lord is good to those whose hope is in him, to the one who seeks him."  

But we are human.

Some days it seems dark out.  Some days His plan isn't what I want.  Some days I want answers.  Some days I cry more than I can speak.  Those are the days when what goes up must come down.  My emotions.  My strength. My faith.

It is through the continued support of:

• my mother who is my constant cheerleader, therapist and guide;
• the limitless help and patience my dad offers;
• friends who are insistent and persistent;
• virtual friends who leave notes of encouragement on my FB page;
• strangers who send cards, emails and messages of hope;
• neighbors who love to ooh and aah over my baby;
• extended family who continues to check in on her;
• a community that supports its residents;
• a Hospice nurse and counselor who always check in;
• two boys who show such love, compassion and dedication to their sister;
• a spouse who does not mind the hard work that taking Everly on our frequent outings entails;
• and most a God who understands where I'm at each day and loves me on the good and bad ones.  

...that I am able to quickly replace those bleak days.  Thankfully, it is through all this support that I have an uplifted spirit, find an inner strength I didn't know I even had and cling to a faith in God that until this trying time wasn't nearly as firm.  For this, I am grateful.

Poor baby. What's wrong?

We are human.  I know those times...be it a fleeting moment or an entire day or more...are to come...as all things that go up must come down.  But I know that I am blessed to have support beyond measure and for that I say thank you.

 Is it better now?

In my reading and research, I have stumbled across this beautiful poem that I must share.  It says everything that I am not able.  It is perfect...just as my daughter is.

  

WELCOME TO HOLLAND

 by

Emily Perl Kingsley.

                         c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned." 
 
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

I could never say it better than that.  I love my sweet Everly and everything about her.  She is my Holland.  

With continued love and appreciation,

Crystal