What am I learning?

What am I learning?  How is my faith being stretched?  

I am not one of those people who boldly ask God to, “ Break me”.... or “shape me, even if it hurts”. I am fully aware that God is capable of doing anything that He wants or desires for the best.  I am just not a person who seeks suffering.  

I would rather spend time with friends, go on vacations, have happy family gatherings, and all of those pleasant things in life.  Why would I want to look for trouble, or ask for trouble?  I like things to be smooth and easy sailing.  

When I first realized the diagnosis of Josiah, a dear friend and mentor said that even this news, is for my good.  How could this be?  How could God allow so many of the pregnant people around me to have healthy babies that they will grow up and grow old and will likely die, far after their parents.  The Bible says, that “all things work together for the good of those who trust God and are called according to his purposes”. ( Rom 8:28 ) All things.... even disease, sickenss, and in this congenital deformities?  

I am no scholar.  Most of my historical testimony is based on my experience with God.  Who God has been to me, and how I have experienced God.  Throughout college, I added to this faith with some study of apologetics and evidence that supported my beliefs, but at the core of my faith is the personal relationship that I have with Christ.  The sense of His presence as I pray, and recognizing his providential arrangements of my life circumstances.  

The first few weeks after the news from the doctors about our baby, I was very numb.  I still am, to some extent.  We were not planning on Number 4, in fact, we were actively planning against it.  :)  When we spoke with the geneticist, he said that it is very possible that this particular egg or sperm had an extra set of the chromosome #13 since we were babies in our mother’s belly.  The chances of this baby forming in this way, is very unlikely.  The odd’s are 1 in 10,000... some say 1 in 15,000.  So I am left with some great questions, that will likely never be answered on this side of eternity.  

I know that grief is a process, and maybe I am not at the “anger” stage yet.  I hope that I don’t go through that, because I am experiencing great peace in knowing that for some reasons that are beyond me, this is in fact providential.  I am settling in on some ideas:

all life is precious, even life that is considered “deformed” or “abnormal”.

who decides what is beautiful?  

the easy road, is not always the best road.

“In this life, you will have trouble”.... we were never promised a life of ease and comfort.  

Even life that is brief, can have great significance and meaning.

These are just a few of the ideas that have been swimming around in my head.  It has been a challenging few weeks.  The mornings are generally filled with lots of activity and a reasonable amount of hope.  When fatigue settles in the evenings, the sadness catches up with me.  Most nights, there are tears.  As my stomach grows and I feel his little feet kicking me stomach and stretching out, as he is safe in the womb for now.... the attachment grows.  This is our child and we love him!  

If often feels like the world is continuing around me at the same pace, but I just can not keep up.   I am at peace with this, in knowing that for a season my life will different.  Our family will be different.  Different is not necessarily bad, it is just something that we have been called to walk through.  We are trying to do it with as much grace as possible, knowing that no person really knows what the future holds, and we are no different.  

Since Ashley was born 6 years ago, I have been very possessive with my children.  What I mean by this, is that I felt like God made them, and now they are ours.  I remember reading a blog of a family that went through a similar situation about a year ago.   The story was my WORST fear.... having a child sick, and then the child dying.  I had never met this couple, but remember saying to God, “please never take one of my children”.  Even my prayer was possessive!  The truth is, that we have been entrusted with them, but they are really not “ours”.  They are gifts that we care for for, but they were created by God and they belong to God.  

I would say that we are very sad, but not without Hope.  Hope that God is strong and powerful enough to heal Josiah if He chooses.  He is also strong and powerful enough to hold us in our grief, if his life is brief.  No matter what the outcome,  we will never be the same..........

DISNEY

DISNEY !

You may ask, why would I want to take the kids to Disney World, with all that we have on our plates now.  I asked myself that question a few times while we were there.  Disney is fun, but exhausting!  

We went for 2 days to the Magic Kingdom, and traveled for 2 days.  My friend Amy  was kind enough to go with me and help me with Ashley & Luke, and Jacob stayed home with Chad.  Since we don’t know how much time Chad will take of when Joey is born, we decided it wouldn’t be wise for him to go on this trip.  Both Nana’s helped Chad during the day,  while he was working and they took good care of Jacob.  I am a little sad to say that it not appear that Jacob missed me very much!  This was the longest that I have been away from him.  I guess he is a big boy now at 18 months!

We went for two reasons... the first was to celebrate our Ashley Naomi.  She turned 6 on March 8th.  I didn’t feel up to doing a big party this year, and I know that she has been wanting to go to Disney for a while.  

The second reason is that I wanted Josiah to go.  I know this may sound strange, but he is alive and with me now, and we don’t know for how long.  I want to give him as many experiences as possible.  I hope you enjoy the pictures!  

23 Weeks , Cardiologist Appt.

We had a visit with a pediatric cardiologist this week.  They used the ultrasound to look at Josiah’s precious little heart.  I am attaching a little video that they allowed me to capture.  The doctor was very kind and took a lot of time to go over the results with us.  He said that the four chambers of his heart have formed and that it appears that the major vessels are in place and functioning.  He did diagnose a VSD, which is an abbreviation for a ventricular septal defect.  Josiah has a moderate sized hole between the lower two chambers of his heart.  From our understanding, it is not something that will be immediately life threatening.  Sometimes the hole can close in the weeks after birth.  In children with a different diagnosis, the hole can be surgically repaired.  There is some question if a surgeon would complete the surgery on a child with Trisomy 13 because of the complexity of other medical conditions.  

As with other visits, we have to face the fact that so many things will not be known ahead of time.  We have the reality that we just don’t know how severe his health will be until he is born.   Our plan is to make him as comfortable as possible and to love him as much as possible!  We will celebrate the time that we have with him, no matter how long it will last.  

We are well aware of the statistics surrounding Trisomy 13, but we also know that anything is possible.  We are in a strange place.... trying to not live in denial, but also preserving hope.  

Once again, Chad and I want to thank you all for your care, concern and support.  We really feel it!  We will keep you all posted as we know more.  

I am attaching a devotion that I read today from Proverb 31 Ministries.  Because of all of the unknowns, we are forced to discipline our minds to think about the things that are true, and have our Hope in God.  I hope you find it as encouraging as I did.  :)

Daily Devotion for March 14, 2013

The Cussing Thoughts

By Lysa TerKeurst

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"Let us hold unswervingly to the hope we profess, for He who promised is faithful." Hebrews 10:23 (NIV)

The sky was blue. The snow crisp white. The mountain slopes full of choices to be made. Which run will we take?

We decided to tackle a "blue run" first.

The ski officials label the slopes by color. The same officials whose job it is to inform skiers exactly what they're about to get into. Yes, those of us crazy enough to strap glorified popsicle sticks to our feet and careen down a mountain need to be informed.

Green for beginners. Blue for intermediates. Black for advanced and those who think they're advanced until they get too far to turn back. Bummer.

We decided we would be smart. We wouldn't overestimate our skiing abilities by tackling the black runs. But blue? Yes, please.

The perfect skiing adventure.

Until.

The moguls.

We'd been on several lovely runs down the same slope when my husband Art suggested we try a different slope. Huh? I am emotionally allergic to different. I like to discover something that's good and stick with it. Why mess with what's working? With what feels good?

"It will be great," he insisted and headed over to the new lift.

Either I was going to follow him or be left behind. That's when I had my first not-so-nice thought. I call them cussing thoughts. It's not that I was actually saying cuss words. No, more like really negative thoughts that I wouldn't want to broadcast out loud.

So, a new slope it would be.

Things started out well. And then the slope got a little interesting. Have you ever heard, "Everything was going fine until we hit a bump in the road"? Yes, well, try a steep mountain full of nothing but bumps. Like the kind that could catapult you off the side of the mountain. Or snap your legs in half.

As fear coursed through every fiber of my body, my mind filled with all things negative and derogatory. Things that were not going to make that trip down the slope an easy one.

What I really needed was to resist the cussing thoughts so I could choose the corrected thoughts. Because dark thoughts are like a black run down the mountain. Once you get on the black slope of cussing thoughts they'll take you down to places you don't want to go.

But in that moment, I didn't choose the corrected thoughts. I made that run so much more difficult by letting the cussing thoughts come in and bring me down.

How like life.

Every day we're going to hit bumpy spots.

Someone will do something that rubs you wrong. Cussing thoughts or corrected thoughts?

You don't get that opportunity you felt you deserved. Cussing thoughts or corrected thoughts?

A cussing thought can become a corrected thought by asking three questions:

* Is this thought in line with truth?

* Is this thought in line with who I am?

* Is this thought in line with who I want to be?

God has taught me how to think using His truth but I have to make the choice to apply what I've learned.

God has challenged me to live out Hebrews 10:23, "Let us hold unswervingly to the hope we profess, for He who promised is faithful."

"Hold unswervingly. Hold. Unswervingly." What does this mean?

God has challenged me to grow in my knowledge of Him but I have to choose whether or not to display this growth through my thoughts and actions.

Think according to truth. Live according to truth. Then His hope will be displayed in my life.

Just like mountain slopes have options for which run to take... so do I with the thoughts I think. Cussing thoughts or corrected thoughts. My choice.

Dear Lord, I am so grateful for Your truth. Give me strength today as I hit some bumpy spots. Make my thoughts pure and in alignment with Your Word. In Jesus' Name, Amen.

Related Resources:
Do You Know Him?

If you missed Lysa TerKeurst's webcast on how to combat negative inside chatter, click here to watch the replay!

Feel like your thoughts are making you want to come unglued? In her New York Times best-selling book, Lysa teaches how to take control of your feelings in order to have godly reactions. Click here to purchase your copy of Unglued.

When you purchase resources through Proverbs 31 Ministries, you touch eternity because your purchase supports the many areas of hope-giving ministry we provide at no cost. We wish we could, but we simply can't compete with prices offered by huge online warehouses. Therefore, we are extremely grateful for each and every purchase you make with us. Thank you!

Reflect and Respond:
What cussing thoughts are you having today?

Write down one you're struggling with. Then, write down a corrected, truth-based thought to replace it with.

Power Verses:
Philippians 4:8, "Finally, brothers and sisters, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable—if anything is excellent or praiseworthy—think about such things." (NIV)

18 Weeks

We had another visit with the pre-natal specialist this Tuesday.  She reported that he is stable, and shows no signs of distress at this time.  She said that his heart looks fine for now, and that he is getting most of what he needs from me at this time.  She referred us to a neonatal cardiologist that we will see in the next couple of weeks.  He will be able to assess his condition as he grows.  With Trisomy 13, the heart is a concern and often has defects.  

She allowed us to video the ultrasound.  This was very special to us, because he was moving around and sucking his fingers!   Hopefully we will be able to see these things after birth as well, but we have no guarantee that he will live that long.  We are trying to celebrate every day of life that we have!  

16 Weeks

For those of you who have not heard yet, we got some very sad news almost three weeks ago now.  We learned that our 4th child has a condition known as Trisomy 13, and he is given a very poor prognosis.

I am now 18 1/2 weeks pregnant and as the truth settles, there is great sadness, but comfort  in knowing that we have the love and support of family and friends.  The greatest peace that we have is  that this world is not our home.  "In this world, you will have sorrow, but take heart, I have overcome the world" (John 16:33 ) .  We also know that if we are absent in the flesh, we are present with God.  Our little baby boy will never be alone.  He will always be loved.

We set up this blog to for those of you who want to walk with us.  It will be a way for us to communicate with you about the details of what is happening.  We don't know how long our little boy will live, but we want to cherish every minute.

We have decided to name him "Josiah", which in Hebrew means "Jehovah Heals".  We know that God is capable of a miracle in his little body.  If He chooses to do this, we will be grateful.  If he chooses to take him to heaven, we will accept that as well.  Just as we have cared for our other three children, we plan to care for Josiah,  if his life is short or long.

Because we have made nicknames for all of our little guys, you we will interchange "Joey" with "Josiah" as we talk about him.    When you ask about him, please feel free to use either name.    We love them both!

We are SO thankful for all of your cards, texts, e-mails, calls, meals, and mostly your prayers.  We do really feel supported by prayer and love.  We are blessed with such support, and we are so very grateful.  Thank you............