Generosity

Last week, I shared a few stories about my Dad and I went into a bit of detail about his hospital stay that ultimately ended up in his passing.  Today, I want to share a story with you about a stranger that extended a smile, hug and small gift to me when I need it during that time.

I remember it was very early one morning and the sun was not even up yet.  My Dad had been battling an extremely high fever most of the night and a relative had driven me over two hours to the hospital because the doctors weren't sure if he was going to make it.  Since I was only 14 years old, I understood what was going on but I was not patient enough to just sit in his room and be by his side.  Instead, I made my way down the corridor of the hospital and into the darkened ICU waiting room.  My Mom called this waiting room home for nearly two months, and I was quite at ease sitting in the silence and darkness that cold February morning.

I thought I was totally alone with my thoughts when I suddenly realized there was an elderly man sitting across from me.  His face was dimly lit from nearby vending machines and once he realized I had seen him, he got up from his chair and slowly made his way towards me.  I was a shy teenager and was not really in the mood to talk, but I didn't make a move to leave.  He approached me and began to quietly tell me that his wife was not doing well and he thought she was going to pass soon.  Then, a smile spread across his face and he reached into his pocket and pulled out a small silver cross.  He handed it to me, said a prayer for my family, and walked away.

I never told anyone about the man and the cross he gave to me, but I kept it in my pocket every single day while my Dad was in the hospital.  In the following months and years, I kept it tucked safely away in my jewelry box, but when things got tough, I always took it back out and placed it into my pocket.  Thankfully, the cross was never misplaced throughout all of my high school and college years and even through all of my adult moves.

When we started going through all of our difficulties with this pregnancy, I pulled out my cross again.  I slept with it in my hand during the early nights and began tucking it into my pocket whenever I had a doctors appointment.  Several weeks ago, I was sitting at a red light getting ready to pull into my next appointment when I decided I wanted to hold the cross.  I pulled it out of my pocket and it slipped through my fingers and into a crack between my seat and the console.  It hasn't been seen since.  Part of me wants to believe that maybe the cross found its way out of the car and into the hands of someone that needs it way more than I do and part of me hopes that it just magically reappears the next time I search for it in the car (which will probably be after I finish typing this!).

The Babe's hand along with mine and our borrowed cross from Mr. Man.
He actually pulled this out of his drawer when I lost mine; I had no idea
he even had one!

The point of that long story is that even though I no longer have the physical reminder of the generosity the kind, elderly gentleman showed to me that early morning nearly seventeen years ago, I still know God is with me.  His kindness also serves as a reminder that even the smallest deeds can make a huge difference to someone.

Too often we underestimate the power of a touch, a smile, a kind word, a listening ear, an honest compliment, or the smallest act of caring, all of which have the potential to turn a life around.            ~Leo Buscaglia

In the last few weeks, my family has been on the receiving end of many acts of kindness and we appreciate every single one.  I have talked to people I haven't spoken to in years and I've received messages from people I have never met.  I am beyond touched by the power of sharing...the power of small acts of kindness...the difference a touch and reassuring words can make.  We appreciate it all so very much.

The challenge now is paying it forward.  Selfishly, I blog because it helps me to write it all out.  I also hold out hope that maybe...just maybe...someone will find my blog when they need it.  Outside of just sharing my thoughts, fears and words with you, I know I need to do a better job of sharing kindness to others.  You just never know when a small act of kindness can make a difference.  I am going to do my best to pass it on!

Have you had a kindness shown?

Pass it on; 

'Twas not given for thee alone,

Pass it on;

Let it travel down the years,

Let it wipe another's tears,

'Til in Heaven the deed appears - 

Pass it on.

~Henry Burton

Different Is Good

When I was a little girl, I knew things were different with my Dad.  He was older than most other dads, but there was something else, too.  He didn't stand like a normal person; he kind of leaned to one side.  He also didn't have the endurance of most other dads I knew.  The most noticeable thing, though, was the oxygen machine that sat in our living room with its long tubes snaking their way through the house and back into my parent's bedroom.   Besides those few things, I thought my Dad was pretty normal.  In fact, I never really thought of my Dad as being different until I got a little older and started taking in the world a bit more.

Dad and Me in 1983

When my dad was a teenager, he was diagnosed with tuberculosis.  This would have been in the very late 1940s and early 1950s.  He spent most of his late teenage years in a hospital hours away from his large family in rural Southwest Virginia.  From the research I've done online, my Dad pretty much lived in this hospital, Catawba Sanatorium.  I've seen some pictures online of how they had all the patients sleep outside for health reasons.  Dad never really talked about any of this with me, but I know that his silence told the unspoken story.  It wasn't pleasant, instead it was filled with moments of feeling very alone and scared for the future.  Dad lost a lung in his battle and carried the challenges of living with one minimally functioning lung for the rest of his life.  When he passed away in 1995, I was 14 years old.

To say that my Dad was an inspiration would be an understatement.  I have thought of him so many times over the last few months while we've been dealing with our own fears about raising a son that may have challenges.  Sometimes, when I get really worried about how our son may handle things, I feel such comfort in knowing how my Dad handled his own differences and challenges with such effortless grace and confidence.

Here are a few things my Dad taught me that I pray I can also pass along to my children.

1) Do not fear a stranger in need; embrace them.  I vividly recall a warm summer night when I was young, probably around 11 or 12 years old, and a road weary stranger walked into the small, country restaurant my family operated.  The man said he was hungry and needed a place to stay.  I was shy and tentative, but my Dad never flenched.  He handed the man a broom and gave him free reign to sweep up the front while we fixed him some food in the kitchen.  As soon as the food was ready, Dad gave it to him to eat and told him he knew a place he could stay for the night.  I remember riding with my Dad in his pickup truck to take this stranger to an old house where he could sleep.  I also seem to recall my Dad giving him some money to help him pay for a bus ticket.  Either way, I am sure my Dad never realized what an impact witnessing all of this would have on my way of thinking as an adult.  When I see someone in need, I think quickly to my Dad and this story.  My Dad didn't care if this guy was telling us the truth or not; Dad just did what felt right to him.  All too often, I think it's easy to turn the other way; I know I have certainly been guilty of it.  I thank God that Dad showed this stranger some compassion and generosity.  It may not have made that much of an impact on the stranger, but it has definitely made an impact on me.

2) Do not let your differences or challenges define you.  When my Dad finally got out of the hospital, he had missed out on some of his most defining teenage years.  Unlike other kids his age, he didn't have a drivers license or high school diploma but that didn't stop him.  Instead of sitting around dwelling on his past and worrying about the future, he decided to do something about it.  He studied for his drivers test and quickly got his license.  He went to GED classes and got his high school diploma.  He even registered for college and started taking accounting classes.  Not one to shy away from responsibility, he also went out and got his first job.  I recall my Mom also telling me how Dad spent his first few paychecks buying things for his own mother.  Even though my Dad was technically disabled and I know he had moments of feeling down, he never allowed himself to focus on these challenges.  Instead, he got up and got busy.  He held various jobs throughout his life, but the one I remember him being most proud of was being the Chairman of our local school system.  He really believed in our teachers and the role they had in shaping the lives of young people.  All of that was a really long-winded way of saying that when life hands you challenges and your future is uncertain, don't spend all of your time worrying about what is ahead.  Get busy and figure it out as you go.  Give yourself a chance to define your true person and don't ever let anyone else tell you what you can or cannot do; defy the odds.  My Dad sure did and I couldn't be prouder of him.

3) Always be a good girl.  March 29, 1995 wasn't a typical Wednesday night for me.  Instead of being a carefree teenager chatting on the phone with a friend, I was sitting with my Dad looking out of his hospital room window at the city lights of Roanoke, Virginia.  It was a peaceful night and we both enjoyed seeing the bustling cars speed by.  I guess in some ways it helped mute out all of the beeps and buzzers of a typical hospital room.  It was comforting somehow to sit there and have a normal interaction with my Dad after watching him battle for his life in the hospital over the previous two months.  It had not been an easy journey for our family, but we had received word that my Dad was finally going to be able to go home that Saturday, April 1.  His only lung wasn't functioning and the doctors had resorted to performing a tracheotomy to allow him to breathe.  We had learned how to take care of it and were ready to handle the challenges that living on a respirator would mean for him and for our family.  Of course, there were fears and doubts and we knew that the months and years that were ahead of us would be difficult, but we also knew that nothing had ever stopped us before.  Dad had always been a fighter and if God had given us the opportunity to keep him with us for a little longer, then we were going to do whatever it took to make him happy.

As I sat there with my Dad on that cold Wednesday night, he didn't say much to me.  He was just learning to talk with his tracheotomy, but he wanted to be certain he communicated one sentence.  I vividly remember him leaning towards me ever so slightly as if to really capture my attention, and he said, "no matter what, always promise me to be a good girl".  In typical teenage fashion, I'm sure I responded with some flighty statement professing that I'm always an angel (yeah, right!).  It was obvious to me, though, that those words had been weighing on him.  It was something he had to say and that he had to know I heard.  I even remember eventually asking him why he was making it such a point to say those words.  I think I even said something along the lines of "you're not dying so stop saying things like that".  In a little more than 24 hours, my Dad would be dead.  Looking back on that moment, I wonder if he knew?  What else did he want to say to me that I was too antsy to listen to?  If I could go back to that night and listen again, I would in a heartbeat.  I can be comforted in knowing that even though I didn't listen well enough that night, I had been listening and watching him for all 14 years of my short life and his actions and love for others would teach me more than any words he could have ever uttered on our last night together.  So, I guess my big takeaway here is that words are powerful.  You never know when the simple words you say may shape someone's life.  The things that are far more powerful than words, though, are your actions.  Let children look to you as their example.  Be the person you want them to be and teach them, not only with words, but with your hands and heart.  My Dad certainly did that for me and I'm eternally grateful.

I've been wanting to write down a few of those lessons and stories from my Dad for quite some time, and it has really been weighing on me lately since I've been thinking of him so much.  His grace, perseverance and confidence inspire me each day and help me realize that whatever happens, it will be okay.  Things don't always turn out how we plan, and we can't control how many days we have left on this earth.  We can control how we live our days and the impact we make on others during that time, especially our children.  I just pray that I can be half the parent and leader to our two kiddos that my parents were to me.

PS - Please continue to pray for our family and for our unborn son, William Olin.  :)  We have decided that will be his name.  William is a family name for both my husband and me and Olin is my Dad's middle name.  We can't wait to meet our special little boy and show him just how great being different can be!

It's Not You, It's Me

I mentioned back in this post that I had found a book called A Good & Perfect Gift that I wanted to start reading.  I postponed reading it for a week or so because I just wasn't ready to commit my 'downtime' to reading about something that would potentially send my mind swirling with thoughts, but this week I finally decided it was time.  I was ready for whatever this book would throw my way.

So far, it has been very good.  The author basically walks you through her discovery that her newborn daughter, Penny, has Down Syndrome.  They had no idea leading up to her birth that there may be issues so when she was diagnosed within hours of being born it really shocked the family.

Here are some of my initial thoughts from the first nine chapters--  It's a great book by the way!

I think I'm kind of similar to Penny's mother.  She is a perfectionist, overachiever and someone that looks to others for approval.  I think in a lot of ways these traits can be positive and negative.  During day-to-day life, they can serve you well.  But when you're faced with having a child that may have challenges, it rocks you to your core.  Perfectionist?  How can a perfectionist have a child that is seemingly 'unperfect'.  Overachiever?  Lofty goals and dreams that you set for yourself and your children may have to be dismissed.  Seek the approval / acceptance of others?  You wonder what they will think and if they will accept your child.

Please don't think I'm the most superficial person on the planet for saying those things.  I just happen to think that we all want our children to be 'normal'.  I've met quite a few moms online recently that have been through varying challenges with their pregnancies and some pretty scary potential outcomes, and one thing that I've found to be a common thread is the grieving process you have to go through of losing the possibility of 'normal'.  Normal by definition is "conforming to a standard, usual, typical or expected".  When you realize that there's a chance your child won't be the standard issue baby 'everyone' else seemingly has, I think it's normal to grieve that potential loss.  Is it superficial and wrong?  Maybe, but I think it's human in many ways.

All of that leads me to this conclusion:  It's not you, it's me.  I'm sure we've all heard this at some point during our dating lives, but this time when I'm saying it, I am thinking of my precious little boy.  Last night as I lay in bed and read the book, something dawned on me.  It's me that needs to change.  Sometimes, I find myself thinking that surely our son will be born and very little will be 'wrong' (don't take that word too strongly).  I want so badly to change things for him...to straighten his legs, to broaden his chest.  I worry about what else they may find and what he may look like.  I realized last night, though, it's not our son that needs to be changed.  It's my fear of judgement and my fears for his normalcy that need to change.  I have to change and realize that my son is indeed normal and perfect.  He may not "conform to a standard", but what in the world is wrong with that?  ABSOLUTELY NOTHING.  Some of the most exceptional people don't conform.  This little boy has the most awesome potential of being a blessing to others.  I just need to shut down my fears and doubts and allow him to be that blessing.

The other thing I realized is that when this little boy is placed in my arms many of these worries will hopefully disappear.  When I feel those tiny fingers slip around mine for the first time...  When our eyes meet... When my gentle rocking can calm his cries...  None of this will matter.  He will be my son.  My precious, perfect son.  I will protect him.  I will cherish him.  I will not change him; he's already perfect.  It's me that needs the work.  I am ready for him, our blessing, and gift.  Like Mark 9:37 says, "whoever welcomes a child like this in my name welcomes me".  God has given this son to us and it is up to us to raise him in the best possible way we can.  When things get tough and doubt creeps back in, I just have to remember this verse, too.  Isaiah 41:10:  Don't be afraid for I am with you.  Don't be discouraged for I am your God.  I will strengthen you and help you.  I will hold you up with my righteous right hand.

Please continue to pray for our family and our precious son.  Also thanks to everyone that continues to reach out to us!  Your support means the world.

What A Difference A Week Makes

So glad to have last week behind us...  To say that it was a roller coaster ride would be an understatement, but that's kind of how life has been around here.  Moments of total faith and optimism that everything is going to be okay and then moments of being sad, scared and pessimistic.

It has been hard to think about writing much lately because we don't have a lot of new stuff going on in terms of the pregnancy.  My next appointment with Duke isn't until early February, so I think I'm falling back into that optimistic, happy lull between doctor visits.  Personally, I'm ready for a break from all the medical jargon, so I'm welcoming this lull with open arms.

Last week, I got a little down because I started mindlessly searching around online for more information.  I know this is a bad idea and try to stop myself, but I guess I'm lacking a little control.  Maybe I need to break out the old crafty Tall Chick and glue my fingers together so I stop googling all the possibilities?!?  That would almost be like a win-win.  My first craft project in months combined with saving my sanity.

My online research did lead me to consult with a genetic counselor.  I read online that it is possible to diagnose the exact type of skeletal dysplasia our little boy could have by doing an amniocentesis.  The benefit of knowing the type of dysplasia is that we would get a better idea of potential outcomes, everything from just being a little person with some challenges to death.  In talking with the genetic counselor, though, she really brought everything back into focus for me.  She asked me again what we would do with any information we learned from the amnio.  This was the politically correct way of asking if we would 'interrupt' the pregnancy if the results came back unfavorably.  I told her that I would still carry this precious little boy as long as I could...so the results wouldn't change anything.  To this, she simply replied that there really wouldn't be much point in an amnio then.  In fact, we would be putting his little life at risk even more if I were to have complications from the procedure.  So, after flip flopping on more testing yet again, I have decided to be patient.  We won't find out exactly what is in store for our little boy until he's born, and I have to find a way to be okay with that.  Please pray for my patience or at least pray I find the glue and self control to quit searching online.  :)

Again, thank you to everyone that has reached out to us during this time.  Your support, prayers and encouragement mean the world to us.  We'll be sure to keep you posted on our little boy.

I also just wanted to share the lyrics from You Are Mine.  We finally found a church here in Cary that we've started attending and this was one we sang Sunday.  I've turned into such an emotional pile of mush that I couldn't help but swipe away a stray tear.  The words just really calmed me and maybe you'll find some inspiration here, too.

I will come to you in the silence

I will lift you from all your fear

You will hear My voice

I claim you as My choice

Be still, and know I am near

I am hope for all who are hopeless

I am eyes for all who long to see

In the shadows of the night,

I will be your light

Come and rest in Me

I am strength for all the despairing

Healing for the ones who dwell in shame

All the blind will see, the lame will all run free

And all will know My name

I am the Word that leads all to freedom

I am the peace the world cannot give

I will call your name, embracing all your pain

Stand up, now, walk, and live

Do not be afraid, I am with you

I have called you each by name

Come and follow Me

I will bring you home

I love you and you are mine

Today, I am sad.

I'm not really sure how to even start this post...  but today I'm not strong.

Today, I have...
--spent far too much time 'learning' about what may lie ahead if our baby has a chest that's too small
--read too many stories that didn't end the way I thought they would
--not prayed nearly enough
--held my daughter close while she's sleeping and wondered if I would get the chance to do that with her brother

I know I need to shake it off and remember all of the strong words I've written before.  I know I need to remember that God is in control.  But, today it's hard.

Coming To Terms With The What Ifs

Before I get started, I just wanted to say thank you to everyone that's reached out to us since our appointment yesterday.  I've read every single one of your emails, comments and Facebook messages.  Your kindness, support and prayers bring many, many tears to my eyes and I cannot thank you enough.  Right now, all we ask is that you pray for us.  Once our little boy is born, we will probably call many of you to action, so get ready!   :)  I also thank everyone that has called and texted.  Each and every one of you has helped make the last 24 hours a little easier.  I'm going to do my best to respond to all of your messages, but it may take me a few days.

Sleep was a bit elusive for me last night but I found myself at peace.  The deep breaths that were hard to take earlier in the day were easier, and I found myself feeling more brave and ready for whatever challenges are ahead.  I know that is because of all the prayers and support we have been fortunate to receive.

This morning, I rolled over and quietly began scrolling through my phone, reading websites and looking for skeletal dysplasia support groups.  I stumbled across a book that I also downloaded and began reading (amazing how productive one can be early in the morning!).  It's called A Good and Perfect Gift.  It's all about the challenge of realizing that your dreams of a 'perfect' child may be fleeting and that it's okay to be disappointed.  I can't wait to read this book and hear another mom's perspective on how she dealt with it through faith.  The reviews are pretty good, so I'll be sure to post more about it later as I read on.

The other thing I found today which struck me is this Erma Bombeck piece.  It's all about how God chooses a disabled child for the right mother.  You can read it by clicking **here**.  If you know me well, I think I fit the description.  :)  I know how to laugh, I can be selfish and I'm also not the best with patience.  I certainly don't expect myself to be a saint, but I'm absolutely going to be the best mom I can be.  I just pray we get the chance to know our little boy and realize he is not ordinary at all...and that alone will be the true blessing.  He'll be extraordinary and perfect...in his own way.

All I know right now is that we're going to be the best parents we can be.  That means I'm going to plan for how we're going to take care of The Babe during labor and the first few days and weeks after he's born.  I want to be 100% focused on taking care of him, so I want to have the right support network and care arranged for her.  It also means I want to arm myself with every ounce of courage, faith and patience I can find in the coming days and months.  If you have any words of encouragement or verses you think would help us along the way, please feel free to leave a comment or shoot me an email (thetallchickblog @ gmail.com).

Thanks again for everything and please, please continue to keep us in your thoughts and prayers.

The Good. The Bad. The Hopeful.

We had our second big ultrasound at Duke today.  I was cautiously optimistic that our little boy would be miraculously 100% perfect, but that wasn't quite on the agenda for today.  It's so easy to fall into a peaceful lull in between doctors appointments and potential diagnoses.  Having Christmas sprinkled in there certainly helped create a distraction, too.  But, today was the big day we've been waiting on and we went into it hopeful for some good news.


Today's Ultrasound
I'll start with the positives first.  His little bowels looked better, so much so that they didn't even mark him down as having an echogenic bowel.  That's certainly good news.  I also still have some placenta previa, but hopefully that will move on its own prior to delivery.  My subchorionic bleed also looked better.  It's still there, but it's definitely not as worrisome as it was before.  That's all positive news.  The ironic part is that the bleed has been worry #1 this whole pregnancy, and now it has taken a total back seat and we don't even really talk about it during our appointments.  There are other things to worry about...which leads me to the, errr, not so good stuff.


Our little boy's femurs are still measuring short and are not within any normal variants.  My optimism that maybe things just weren't measured right the first time didn't hold true.  His femurs are also definitely curved.  One of his femurs looked really malformed and the other looks like it has mild curving.  His other long bones measured okay, but his chest measurements were a little off.  In a normal chest view, usually the heart takes up a 1/3 of the chest cavity.  When looking at our little boy, his heart clearly takes up way more than a third.  This is a big concern that has never been noted during previous ultrasounds.  When you couple these things together, the most likely diagnosis right now is some form of skeletal dysplasia.  There are hundreds of different types of dysplasia and the outcomes vary widely.


Right now, we're dealing with potential outcomes of our little boy leading a relatively normal life with some physical limitations to our little boy not making it.  The statistics on skeletal dysplasia are also varied and I refuse to Google it too much, but Children's Memorial Hospital in Chicago states that 25% are stillborn and 30% die within the first 6 weeks.  SOOO, that's scary.  Nonetheless, we are dealing with quite a range of potential preparations, emotions and facts.  The most worrisome part right now is his chest / heart.


How do I feel?
Pretty much the same as I feel every time we walk out of one of these 'big' appointments. Like the rug has been ripped out from underneath me.  I swear if I shed another tear in front of another random medical person I'm going to.... I dunno.  I'm just tired of being told it's okay to cry and that they're sorry.  I don't want anyone to be sorry.  I want someone to fix it... to tell me it's going to be okay and that it really be true this time.  I absolutely adore the doctor we're seeing now at Duke and when he looks at me with those sad, sorry eyes my stomach drops.  I know he's sorry.  We're all sorry.  But, we have to go on...


There's a part of me that still hopes for a miracle, but I'm afraid.  I'm afraid to be too optimistic, too hopeful.  There's also a part of me that just wants to pray 24 hours a day that a miracle will happen.  Then, there's a side of me that isn't really sure what to pray for.  So, right now, I'm praying for strength.  Strength to endure whatever lies ahead.  Strength for us.  Strength for our little boy.  Strength for our precious daughter.  Strength for our doctors to help us through this in the best medical way possible.


I never ever, ever, ever in a million years thought this would happen to us.  Isn't it funny how that's one of the first things you say when something bad happens?  Why us?  Not fair.  In some moments, I see all the hopes for our perfect little family fly out the window.  I worry about how he will be accepted.  I worry about how he'll feel about himself.  Then, I remember that we need to pray for strength.  Strength for all of us and I try to remember these things...

• The things which are impossible with men are possible with God (Luke 18:27)
• Fear not, for I am with you; be not dismayed, for I am your God; I will strengthen you, I will help you, I will uphold you with my righteous right hand (Isaiah 41:10)

So, what's next?

Right now, I have more questions than answers.  I would just ask that you remember us in your own way.  Please pray for us as we move forward in the coming weeks and months.  Praying is all I can ask for....  Pray hard.  Ask others to pray.  We need everyone's prayers right now for our family.

I don't know how we're going to handle the logistics of all this just yet.  We 100% know that my care is totally being transferred over to Duke and that's where we'll deliver our little boy.  Obviously, this isn't as easy as just rolling 10 minutes down the street to our nearest hospital.  We also know he'll be in the NICU and will be immediately evaluated by geneticists and pediatric specialists.  All of this feels so foreign right now and we don't really know what to expect about how long we'll be in the hospital or what types of help we may need when the time comes.  

In the coming days, I'm going to try to figure out what we'll do when labor starts, but right now I just need time to process it all and start figuring out potential solutions.  I also need to stop worrying about what we're going to do if the little man tries to make an appearance on our long drive to the hospital..  :)  Ugh.  That would put my whole fear of merely crying in front of medical staff to shame... delivering on the side of I-40 would take my inhibitions to a whole new level.  :)  

That's it for now...  I'm probably going to start posting more regularly now; it helps to write it all out.  I may also make my blog private, or start another private blog all about our little boy.  We'll see...  

PS - A HUGE thank you to everyone that has emailed, sent Facebook messages, cards, etc.  We need your support, words of encouragement and prayers more than ever.  When things get tough, it's nice to know you all are there supporting us in this journey.  I also just have to say that I absolutely have the best partner in the world going through this with me.  Mr. Man has been amazing.  When we get back from these appointments, I just want to crawl into a ball and disappear for a bit.  He just lets me be and he handles The Babe.  In fact, I hear them downstairs now dining on a delicious dinner of fish sticks and applesauce.  :)  Gotta love that man for taking charge and being an absolutely wonderful father, husband and friend.