Thirty-five Percent...

Do you ever get news that just sort of Rocks ya?

Not really in a good or a bad way...it just throws you for a loop?

Like, you were rolling along and all of a sudden you find something out and you're like, "Huh? Really? I never would've guessed that?"

I'm talking about news about yourself, by the way.

I feel like I once wrote a blog post that started very similar to this.  That time it was news about stuff you had lived your life thinking could never happen, and then all of sudden you were told something was a possibility.  That time I was talking about Dr. Eigen telling me that it may be possible for Chris and I to have a baby biologically. 

This time, it's about my lung function...


At church on Sunday, we were ripping our tape measures, and mine started at 38.5, and ended with the normal life expectancy for a woman, of 81.  This was supposed to show us how much "time" we potentially have left on this earth.  We were to be thinking about what impact we want to have with the time we have left. How will we make the time we have left meaningful?

I sat there and looked at that tape measure and I paused...


Thirty-five percent


Maybe because I'm approaching 39 this year...

Maybe because I know that the median life expectancy for someone with CF is now 44 years old...

Maybe because that number is the lowest I've seen and I pray it was just a fluke...

Maybe because in some ways I feel like I'm in denial about that number and I tell myself I don't function there...

Something had to be wrong with that machine in December, right?

Maybe they didn't calibrate it that day?

I mean, do people with a lung function at that number work full time?  Do they "test" in to the advanced workout group?  Do they have 98% SpO2 saturations when checked, on room air oxygen?  Do they go over a year without an exacerbation that lands them in the hospital or on Home IV? Do they work full time while they're on Home IV?

Do they?

I've always been somewhat of an exception to the rule when it comes to my CF.

If it works for others, a lot of times it doesn't for me.

I pride myself in not letting CF hold me back. I like that I can proudly and boldly say, "I have CF, it does NOT have me!"


I've been thinking about my life, or rather, my mortality, since that appointment in December. 

The quality of it vs the quantity...

The meaningfulness of it all...

The changes I am facing so that I can have both quantity and quality...

I paused and I thought, am I looking at the right measure? Should I have ripped this sucker way further down than where I did?

Then I added 5 more centimeters because I remembered Chris and I are going together at 86 of Euthanasia.

Because thirty-five is just a number on a computer.

I'm back!

It's been a while...and I've missed you.

Apparently some of my friends have missed my blog too, because I mentioned it at one point on Facebook and they were all, "YES, please blog again!"

So here I am.

I'm not even going to try to update from the last time I blogged.  It's been too long.

Life is good.

God is good.

And I'm excited to be back and see what 2016 brings us!

It's been a year!

It's been a year.

A year from the call that turned our world upside down.

A year exactly, from the day we brought our sweet little Bert Gert home.

It's been a year, since Chris became a Dad.

It's been a year, since I became a Mom.


 It's been a year!


It seems like longer, but at the same time it seems like it was just yesterday.

Our lives have changed so dramatically.

I've learned a lot this past year.  

Want to know the Number 1 thing I've learned?


I still have NO clue what I'm doing as a Mom!!!!!


Yes,  I know more now, than I did a year ago, but I still don't really know what I'm doing. 

And to be honest, I think it will always be like this to some degree ;0)

Something I do know...

I know how to be B.G.'s Mom.  

I know what she's saying when she asks for "mulk", or for "takes", or tells me "I Paya'!"  

I know that "Bubbles" means she wants to watch Bubble Guppies.

I know her favorite person in the world is her Papaw!

My heart skips a beat when she yells for the duckies and runs to our bedroom to get them.  (I sincerely can't wait to get a call from her teacher that says, "B.G. told us her brother is, Sexy!?!?!?!?!")

I am the proudest Momma on the planet when she prays aloud with us at night or at the table, says "Amen," and comes up to me at random times, grabs my leg, kisses it, looks up at me and says, "I yuv you!"


There will always be new things to learn and discover with her.  

We will always have moments that frustrate us, that drive me to run into the bathroom, shut the door, and pray that we can make it through the rest of the afternoon.

We'll always be reinventing how our days look, because one moment she'll love something and the next she will want nothing to do with it.

We'll constantly be growing into our roles, as Mommy and daughter (and Daddy for Chris), and what our family looks like.  

But the best part of this is that we will get to learn and grow and do all of these things together.


It's been a year...

It's been a GREAT year, and we're so thankful we get to call ourselves a family!

Heavy Heart

As usual, I got up this morning after my 4am treatment, turned on my phone and started my morning routine.  

But this morning, instead of all the usual happy things hitting my facebook feed, I saw quite a few sad posts.

Posts that weren't from my friends...they were from friends of one of my Facebook friends.

The CF Community lost another precious life.

I didn't really know him.

I never actually met him.

We never spoke outside of facebook.

But my heart hurts...

for him...

for his family...

for his fiance...

for the CF Community in general.


As I get older, now that I'm a wife and a Mom...my health and making it a priority is very different than it used to be.

And not that I never thought it wasn't a priority before, it certainly was.

But I see things a bit differently now.

I probably shouldn't.  

I should have seen my health, and the things I do as being important for other reasons before.

But I'll be honest.  

Before, I looked at what I did (or didn't do) to maintain my health as something that was only going to hurt me, no one else.  

It's true that my failing health would primarily hurt me, but secondarily it would hurt my parents, sister, brothers-in-law, sisters-in-law, nieces and nephews, husband, and now Bert Gert.

Recently I've been very intentional about doing everything I'm supposed to do.

Since my freshmen year in college (when I went in the hospital after getting UBER sick), I have been extremely purposeful about doing my treatments daily.  It started at once a day for 30 minutes, then I bumped it up to twice a day...then my timer on my vest broke, so it was 45 minutes twice a day.

If I was sick, or coughed a lot, I'd do it more.  

I did my inhalers and my nebulizer treatments as well.

I was diagnosed with CF related Diabetes my last year in college.

I've never been good at monitoring this.  Partly because it really only seemed to be an issue when I was sick....and partly because, Seriously????  It's just one more thing to have to do.

So I've been very intentional now about taking my enzymes when I eat, and checking my blood sugars and taking insulin now.  

I'm playing softball with a church Co-ed league, and I'm working out twice a week after school on top of that.  I hope to increase this once I get used to that schedule to begin with.

I'm pretty much a HOT WET MESS...but I'm trying to work on that.

In general, I don't feel bad.  

I think I'm pretty "healthy" for a 33 year old living with CF.

But I don't always do the best job at maintaining the best health for me.  

I'm trying hard.

I have to!


Please don't misunderstand me...in no way do I mean to imply that Kyle didn't do what he was supposed to do, or should do to maintain his health.

I know he did.

CF is a part time job to begin with. 

And even when we do EVERYTHING, exactly right, and go above and beyond....

We still get sick...

We still cough for a few hours during and after treatments (at times)...

We still have to go on IV medications...

We still have to go in the hospital at times...


And that SUCKS!!!!!!!

There's nothing worse than feeling like you're on top of things, doing everything you're supposed to, trying your best in that moment, and finding that your Pft's have dropped.

CF tries everyday to break us down.

to suck the life out of us.

It never stops...

So we can't ever stop!


Dear Kyle,

  I didn't know you personally...but we had a special connection that only people with CF have.  We know personally the ups and downs of living with CF.  Fighting every day.  Fighting on the good days and fighting on the bad.  Doing whatever we can to breathe a little easier, to put on a little weight, to live as normal a life as we can, in spite of all the abnormal things we deal with that others don't.  I'm sad for you, that your new lungs didn't work out like you, I, and everyone in this special community hoped they would.  I'm sad for your family, that they've lost someone so very precious to them.  I'm sad for the CF Community, and that we have lost another wonderful member of our family.  
  At the same time, I'm so happy that you are now breathing easy.  I'm so happy that a nasal cannula, nebulizer, percussion, FEV1, and a million other CF related things are no longer a part of you.  I'm so happy that you now have the ability to do everything your gunk filled CF lungs tried to hold you back from.

Breathe easy my friend.  Run, jump, dance, paint, enjoy the pure oxygen and deep, full breath of life that you now get to experience.  Oh...and put in a good word with God, ask him to bring a cure fast.

Love,
Holly


To help find a cure for Cystic Fibrosis, please visit www.cff.org to make a donation.
 



 

Update our life as 5 (I include the ducks in that number)

As you can imagine...life has been a bit of fifty shades of Cra, since Bert Gert joined the fam.

I'll be honest, this hasn't been an easy transition, probably for all of us.

But at the same time, because of meeting her before, and having visits, I think it was as good a transition as anyone could ever ask for. 

I don't know about Chris, but I would say the transition was probably harder on me than on B.G.  We went from no kids, to a walking toddler....Yikes, how'd we do that?!?!?!?!?!

But, she is an amazing girl, and I couldn't be happier to be her Mommy.

I haven't updated in a while because, well...

It seems like there's been so much that has been going on, but also it seems like there's not a whole lot new to tell you all at once.

We've been continuing to get used to life with a 17 month old.  What that means for us as parents, and what that means for her as our daughter. 

I have to give MAJOR props to my super HOT HUSBAND!  He is a SUPER HOT DAD too, and he's doing an AMAZING job!  I couldn't have asked for a better partner in life, and I couldn't have asked for a better Dad to my children.  We are most definitely a team, and as Brandon reminds us often, we are unstoppable.


So, the most recent news...

At the beginning of June was supposed to be termination court.

Turns out it was scheduled for 1/2 a day, and not a full day...so they all went, but just to reschedule, and to schedule a mediation date.

Mediation means:  We all (with attorneys) sit at a big table and say, here's what we are willing to offer you, and in return you (bio parents) sign over your rights.

Or so we originally thought.

Turns out, they don't sign over their rights, they just sign consents that B.G. can be adopted.

SO...Chris and I decided not to offer anything at mediation.


Bio parents signed general consents anyway!!!!


You're totally thinking this is a major Woo Hoo, right?  

It sort-of is...

Because this doesn't mean they've terminated rights...they still have parental rights.

Which means, we still have to ask permission to cut her hair, or take her out of the state, and they still have visits with her...until rights are terminated.

Rights won't technically be terminated now until the finalization of the adoption.

Which won't be until September at the earliest.

However, CHINS (Child in need of services) court is scheduled for this coming Thursday, and because they signed consents at mediation, it is being petitioned that all services and visits be stopped.

We are working our way to finalization, but we still have a few roadblocks to get through.


So that's the update.  Please keep praying for the whole situation.  For B.G. and us with these (hopefully) last few visits, and that court on Thursday goes well. 

Thanks friends and family!

 

Right Now...

~ I'm sitting in Starbucks, waiting on Bert Gert's family visit to get over, so we can go home and go to sleep.

~ I'm feeling so blessed to be this sweet baby girls Mom, for as long as God allows me to be.

~ I can't wait to pick her up and see her smiling and waving excitedly that I'm there.

~ I keep replaying in my head, when the supervisor came and got her, and she turned around, looked at me quizically, and then smiled and waved at me...her way of saying, "I'll miss you!"

~ I'm hoping my HOT husband is feeling much better.

~ I can't wait for TOBI inhaled powder to go on the market so I can say "Good Riddance and good bye" to TOBI (via nebulizer) FOR-EV-ER!

~ I can't believe it's been almost a month that Bert Gert has been in our home.

~ I wish my HOT husband was here with me.

~ I'm glad it's Wednesday night and I only have 2 more days to work this week.

~ I'm thanking God...for the blessings in my life...and I'm recognizing that He is the one who has provided me with such a wonderful life.

Inquisitive minds want to know...Excited parents want to tell!

My HOT husband is the master at posting vague things on facebook.

I don't have a problem with this.  Sometimes we both like to see what people will say and then we just chuckle in the background because NO ONE  knows what's going on and it's driving them crazy (more specifically my Mom...tee hee)!

So anyways...Tuesday I posted a vague status of my own, and I tagged Chris in the post.

I'll be honest, "Drop your beads Frank, our prayers have been answered!" is the punch line to a joke.  HA HA (said with the enthusiasm of the 'dramatic reading of a real break up letter' guy)

But the truth of the matter is that I did post that because prayers were most definitely (said with James Earl Jones voice) answered!

Many of you don't know, Chris and I were contacted in late October about a possible adoption opportunity.  We've been in contact with some amazing people since then.  They've been caring for a child in Department of Child Service's care, and the plan was changed to Adoption. 

So...Chris and I started back at the beginning.  We had to re-do all of our background checks, paperwork, home visit and home study in order to become Licensed Foster Parents.

Tuesday at 3:15 I was jammin' to some awesome 80's music on my way home when the phone rang.  It was the DCS caseworker, and she dropped the bomb that Wednesday (yes the very next day...not even 24 hours later) at noon we would be picking up this sweet girl.

We met her for the first time in January and have spent some time with her since, so she isn't new to us...we aren't new to her.  But being together 24/7 and learning how we all fit as a "family" is new for the 3 of us.

We call her our daughter, and refer to each other as Mom and Dad.

"Bert Gert" is 14 months old, and is absolutely GORGEOUS!!!! 

We are so excited to have her home.

We won't go into details about what has led her to our home...I'll only say that her birth parents have made some decisions that have caused them to currently be unable to care for her. 

We hope that they're able to learn from those decisions and do better in the future.  DCS is willing to give them the chance.  If things continue as they have, sometime between June and August we will be able to adopt her.

Oh, and because we are fostering to adopt (and aren't able to adopt immediately) we will not be posting pictures on facebook (DCS rules).

So if you want to see her or meet her...I guess you'll have to schedule a visit (you come over unannounced and wake her from her nap and I will come at you like a spider monkey)!

Thank you for all of the prayers!  Keep them coming.

Our greatest prayer is that God will be the number one director in "Bert Gert's" future.  We know he has a plan for her life.  We pray that future includes us...but if not, we pray that future is filled with love, happiness, safety and security for her. 

Yep...I'm now a Mom!