Be Still

I think it is safe to say that I have had some serious writer's block lately or maybe I have just felt like I do not have much to say.  People always tell us we are being so strong and handling all of this so well.  And I truly do appreciate all of your kind words.  But to be completely honest, I just do not feel so strong.  I feel like I am doing my best to keep it all together, but on the inside I feel like life is in a million pieces pulling me in a million different directions.  Here I am at 27 weeks, quickly approaching what will be the third trimester of my pregnancy.  We received Asher's diagnosis almost exactly 2 months ago, I honestly was not even sure we would make it this far, so I am beyond thankful for that!  The process of waiting for what is to come is the biggest emotional roller coaster I have ever been on, it is exhausting to stay the least.  Pregnancy is a beautiful thing, something that women are supposed to embrace and enjoy.  I can honestly say that I have had a hard time with that lately.  I am terrified when people ask me about Asher because I know they are assuming that everything is fine and dandy.  They think that I spend my evenings making a baby registry and creating the perfect nursery for this little guy.  Little do they know, that we have made no preparations for Asher because we have no idea what to expect.  Instead we are forced to talk about our birth plan and what type of measures we want to be taken at the hospital.  The dooming words "trisomy 13" are always lingering in the back of my head.  I wake up every day anxious and nervous all at the same time to feel Asher kicking in my belly because then I know that we have been blessed with one more day with our sweet son.

Some days feel perfectly normal.  But then I am quickly drawn back in to the reality and the seriousness of the road ahead.  The fact that we are always on the edge of our seats.  The fact that we had to officially cancel our plane tickets back to the east coast.  We were supposed to fly in mid May to see our families, but have decided it is best we stay here in Hawaii.  The fact that we have several doctors appointments a month.  The fact that I really do not feel like myself.  The fact that I have no idea what tomorrow will bring.  The fact that it is difficult to plan anything days or weeks out.  Facts are facts.

I have to remind myself several times a day that I am not in control.  This path is exhausting and I can definitely feel it wearing on me.  The verse, "Be still and know that I am God..." speaks volumes to me and I have to repeat it several times a day.  He is not just some homely looking dude off the street, He is God, the creator of all things.  The One who is writing our story right now is entirely in control and actually knows what He's doing.  There are days where I think He is totally crazy and I feel like this is all too much, but somehow He manages to give me the strength and energy to just keep going. It's like how people always ask well if God is so great and mighty, then why does He let bad things happen to good people?  For the record, I consider us to be good people, just thought I should clear that up : )  Anyways, it is building us, molding us, shaping us, into the obedient and diligent followers that we are called to be.  Nothing in life that is worth it is easy and this falls right into that category.  If life was always a walk in the park, then our faith would not be tested, and therefore we would not grow.  The bad always always always has a purpose and always always always produces something bigger and better than we could ever imagine.  So no matter how many crappy days we have, or how many days we feel like throwing in the towel, I am reminded that there is meaning in the struggle and there will be beauty in the struggle.  The real question is how in the world are we so deserving of this grace? 

I want to share this song with you that a dear friend sent to me a while back.  We always have music playing at our house and this is one song that I may listen to a few times a day, okay maybe a lot more than a few, but you get the point.  It is so powerful and so perfectly puts to words how I feel. 

"Though you slay me, Yet I will praise you

Though you take from me, I will bless your name

Though you ruin me, Still I will worship

Sing a song to the one who's all I need "

People probably think we are nuts dealing with Asher the way we have and remaining so positive and hopeful despite what the medical world says.  This song captures why we will continue to worship and praise His name despite feeling that He has taken things away from us and left us quite broken.  He will always be all that we ever need and I know that I need to remind myself of that always because life is so daunting sometimes.  No way we would be where we are without Him, so regardless of what is going on around us, we will continue to be thankful and grateful.

Easter Egg Hunt

Happy Easter!

Easter family picture

Waterfall hike with a baby on my back, baby in my belly, one of my friends AND a almost 3 year old!  I think we were feeling a lot like super mom that day : )

View at the top made it well worth the trek up there, and I do mean up there!

Hanging with daddy before the egg hunt

This is our goofy Micah who brings us so much joy!

Airplane and helicopter book, happiest boy ever right here!

Beach day with friends

Morning smiles!

Checking out the animals at the zoo

Mommy and Micah

Who actually sits in their stroller, standing is much more fun!

Another day at the beach!

Ahhhhhhh

First boogie board ride, I think it was a hit!

Future boodie boarder, making Poppy proud!

Small blessings all around us

This is the day that the Lord has made; let us rejoice and be glad in it.  Psalm 118:24

Each day is a truly a gift!  We have chosen joy and chosen to be happy day in and day out.  Let's see, what have we gotten ourselves into lately?  We have hung out at the beach, played tourist and walked around downtown Honolulu,  and enjoyed good food with good friends.  Oh yes, and it is important for you all to know that I saw my first centipede the other day IN OUR KITCHEN...ALIVE!!!  I will spare you all the picture of the centipede, you can thank me later for that!  Scorpion and centipede can be checked off my list, I'd rather not see either one of them ever again!  Our primary support system in on the east coast, but I am extremely grateful for our small support system here in Hawaii.  We have some really good friends who have been so supportive throughout everything.  People I know we can count on at all times on any given day.  And people who are always down for a cookout and a good evening of laughter.  Thankful for you all, probably a whole lot more than most of you all know!

Anyways, I just wanted to update you all on our latest doctor's appointment.  As I have told you in the past, I really dislike going to the doctor.  It's not that I do not want to see Asher, it's just hard to hear people tell you that your son may not make it.  And then there is always that fear that today is the day.  Today, I am happy to say that it was our best appointment yet.  I left there feeling good and no tears were shed during this appointment.  It was nice to be able to look at the screen and just smile and enjoy watching Asher bounce around in there.

All in all, Asher looked great today!  Honestly, to me, he looked like a normal, healthy, happy, blessed little boy in there.  He even gave mommy and daddy a few smirks while we were peeking at him!  His heart was beating strong and looked good, again, the heart condition does not look as bad as what they thought in the beginning.  My fluid levels were great and he seems to be right on track as far as growth goes.  He is still about a week behind, but in the big scheme that is not too big of a deal.  His kidneys look a little different, maybe slightly larger, but they are functioning perfectly fine.  We got ourselves a little fighter in there, makes me smile just thinking about this sweet little boy.  He is one special guy!  The doctor was amazed at how much Asher does not look like a typical trisomy 13 baby.  This is awesome to hear, but unfortunately doesn't say a whole lot because it is in all of his cells and we will not know how it affects him until he is born.  So confusing and so frustrating!

The sweet sonographer was such a blessing today!  She treated Asher like he was any other baby and couldn't get over how cute his nose and lips were.  She spent an hour with us, when she did not have to do this.  She sent us home with tons of pictures and even hooked us up with a few 4D pictures of Asher's face.  For some reason they do not typically do the 4D pictures, but when I asked her about them she insisted that she would get some for us.  Before we left the room she asked us to roll up all the pictures so other people would not see how many she printed for us.  She totally went above and beyond what she had to do for us today and I am so grateful for that!  These are pictures we will cherish forever.

Sad news, our doctor is retiring and will be processing out in the next few weeks.  We are praying that the other 3 doctors will be just as good and just as supportive as he has been to us this far.

I am currently at 25 weeks, I am thrilled to have made it thus far, but I am also terrified because any day now anything could happen.  From stories I have read, it has ranged anywhere from 25 weeks to 41 weeks and there is just no telling when things will happen.  I am a total planner, so this makes me totally crazy!  Especially knowing that there are plane tickets that need to be bought for parents to come out here and daycare to be figured out for Micah.  But again, I know this is God reminding me that I am not in control and I do not need to worry about the details.  He has got this all under control and things will play out as they are supposed to.

And our silly Micah boy.  Today we dropped him off at the daycare they offer at the hospital.  We trade off between dropping him there and dropping him off at a friends house.  I don't want to wear all of our friends out!  He of course was crying when we left him!  When we picked him up he was sitting on one of the ladies laps.  They said that he would not get down the entire time!  I promise you that this child never stops moving!  I was shocked that he was so content just sitting on their lap the entire time we were gone!  As soon as he saw Mommy and Daddy, he jumps down, starts jabbering and bringing us every car and truck he could find.  Too funny!

Teething boy, falling asleep on daddy, it has been a long time since he has fallen asleep like this!

  

Beauty in the Struggle

How does one have hope when...

-The statistics say that 95% of babies with trisomy 13 are miscarried or born stillborn.  Of those 5% that are born alive, only 5% to 10% make it to their first birthday.

-The nurse in mid conversation says that you are grieving a loss that has already happened when I know very well that my child is still alive and kicking in my belly!

-Most view these babies as incompatible with life, thankfully no one has ever used those terms when talking about Asher, but that is how the medical world terms these babies.

-You have no idea how or when this is going to pan out.  Or what tomorrow will bring.

-There are several times a week where you feel defeated and don't think that anyone really understands you.

-You just want this all to be over with.

I am sure that some of this may resonate with you.  I have plenty of reasons to lose hope and just give up.  But I have one reason not to and that is Jesus Christ.  The One who reminds us that our struggles are heard and that our struggles are meaningful.

Now, let me be honest with you.  When I write my blogs I am typically in good spirits.  I have kept quiet for over a week now mainly because I had no idea what to write.  My thoughts were all jumbled in my head and I would sit down and start writing and just couldn't find the words I wanted and needed to say.  With that said, all of my days are not good days.  I struggle in this journey and I have cried many many tears over all of this.

My sister in law is pregnant and yesterday I got word that the baby may be coming soon.  You know soon as in whenever this little one stops playing tricks and actually decides he or she wants to make their appearance.  I love my sister in law like she is my sister, I consider her to be one of my very close friends.  After my mom shared the news that baby may be born in the next few days I was super excited.  And then the emotions washed over me.  I spent most of the afternoon in tears, not because I am upset that my brother and his dear wife are having a baby.  I am beyond thrilled for them and know that they have been faithful and endured their fair share of trials.  It took me a while to actually figure out why I was crying.  I am still a little puzzled by it because I did not expect to be taken over by so many feelings.  I'm sad because I cannot hop on a plane and be there to see this little one like I was there for my other 2 nephews.  I'm sad because we always wanted to have babies close together so they could grow up side by side and be best buddies.  It kills me to think that that may not be an option.  However, I think the biggest thing is that in my head I always knew okay Melissa is 3 months ahead of me and now all of a sudden she is about to have a baby!  Oh dear, that means that my time is quickly coming and that scares me to death!  I think that is why I was overcome with so many tears because the reality that Asher is going to be here before I know it hit me really really hard.

With all this said, I am not hopeless, I am continuing to be hopeful.  Our God is a God of miracles and nothing is impossible with Him.  I am grounded and I know all of the viable possibilities of what could happen with Asher, but I will never lose hope in our great God.  Just think of all the crazy things we read about in the Bible.  Here are a few good examples:

-Jesus heals the blind man.  Yup, I'd say this was a pretty impossible task, but he knocked it out      with no problem at all.

-Jesus heals the woman who has been bleeding for 12 years.  He says to her in Matthew 5:34,  
"Your faith has made you well..."  So simple, yet so powerful.  She believed and endured and because of that she was healed.

-Jesus heals the leper.

I could go on all night and share many more, but these were just a few that popped into my head.  And this my friends, is why we will never give up hope.  There is a greater purpose in this and for now all we can do is be faithful and seek out the one who knows what He is doing.  I have no clue what I am doing and would not be able to get through day to day without daily seeking Him.  I'm thankful for a loving God who puts up with me always, even on those days where I am doubting Him and doubting my strength in Him.

I felt that I needed to be transparent with you.  I am hopeful and honestly I have no idea what that will mean in the days, weeks, and months to come, but whatever it is I know there is one person who knows what they are doing.  Thank goodness because I know I feel pretty clueless here!  I think it is important that you all know my heart and my faith throughout this battle.  We are fighting the good fight here and there are days where I feel like it has already taken it all out of me.  Nights where I wake up in the middle of the night and can't sleep because I have SO many thoughts racing through my head.  Days where I see a newborn baby and I just want to cry.  Days where I leave my doctor appointment with tear filled eyes feeling so defeated.  Moments where I just want this nightmare to end.  Days where I feel so emotionally and physically exhausted.  Despite all of that crap, I have so much to still be hopeful for and I will continue to bring myself back to that mindset no matter how hard it is.

An update from the doctor world:

I had an appointment with a midwife this past Monday.  Asher's heart was beating perfectly, Praise God!  She measured my stomach and I was measuring at 24 weeks, which is exactly where I need to be!  Another praise!  Other than that there isn't much to say about the appointment.  I felt like I was forced to talk about all that has been going on and honestly I just didn't want to.  It is painful for me to actually voice the realities of Asher.  We have had so many visits with doctors and people that it really wears you out.  She preceded to say that she was sorry and gave me a hug.  It is hard for me knowing that people are feeling sorry for me, I do not want anyone to feel sorry for me.  This journey is not about drawing attention to us or for people to point at us and say gosh I feel really bad for them.  This journey is about our faith and that we have been chosen for this journey for a reason.  This journey is about a family that is remaining hopeful.  This journey is about a family sharing their testimony about how God is present and alive, even when He feels so far away.

Again, thank you for listening to my mumble jumble of thoughts.  Sam and I love each and every one of you so much and it means the world to us that you are walking beside us in this journey.  Next doctor appointment is next Tuesday, so we will update you all again soon : )

Rejoice in hope, be patient in tribulation, be constant in prayer.  Romans 12:12

Daddy and Micah headed home after a fun morning at the beach

Morning stroll around base

Feeling blessed!

Little boy and his first pair of rainbows, rainbows for little boys...I couldn't pass them up!

24 weeks!