One Year Later

It was one year ago today that my youngest son Judah stopped breathing. To be honest, as this day drew closer my heart was flooded with a myriad of emotions.  Thankfulness.  Fear.  Anxiety. Love.  Some days the fear wins.  But there is no trouble, no bad days that will ever keep our Daddy God from us.  When I am on the floor fighting away the wave of anxiety He is right there with me.  When Judah's lungs sound wheezy and his temperature rises He is with us and for us.  

A couple of weeks ago I had a massive panic attack after a not so lovely trach change here at the house.  Judah had fought us during the process and clenched his stoma closed.  We worked to place the new trach in his airway and finally got it.  Mike saw it coming on me and he and the nurse took over, I fled to our bathroom and instantly the vise of the panic attack gripped me.  Once behind closed doors, I dropped to the floor hyperventilating. Even in the brokenness He was with me.  Gently, lovingly He whispered, "Sing." Crawling to our iPod I pulled up the song "God is Able" by Hillsong.  At first my mouth couldn't form the words but my spirit sang with everything it had. With every phrase, every declaration of truth the vise loosened.  Soon I was on my feet hands upraised singing out the praises of our God.  

That is the faithfulness of our Daddy God.  I do not know what the next 365 days hold for us. But I do know the One who holds all of our days in His hands.  And in that I take heart.

He is with us.  He is for us. We trust Him.

xoxo Jessie

  

Doors

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Doors. We go in. We go out. We throw them wide open. Sometimes we slam them shut. However we navigate them, they are a point of entry or exit. Recently, we had someone leave through our front door with little chance of coming back through it. We made the heart wrenching decision that we would not be able to adopt a lovely young woman that we have been caring for. The decision was not made lightly. We prayed, sought godly counsel, researched options and pressed into our Daddy God's wisdom. We pray that she will find a home where she can flourish and find the happiness that she so deserves. To say that we didn't see it ending this way would be an understatement. The Little Bits mourn the loss of a sister. Mike and I grieve over another disruption in this young one's life.

Whilst we grieve, we continue to trust and hope. We trust that the One who created us all has a great plan for this precious life. And we hope that she will find exactly what she needs.

The complexities of our family are challenging. Some days I stand before the mirror and remind myself that we chose this adventure and Daddy God is still with us. Because He is. Always. And He has a way of making beautiful things after our darkest times.

That Time With the Leia Costume

Last fall and winter combined to be one of the most difficult seasons that I have endured.  When Judah stopped breathing October 12 I thought that it couldn't get worse. Some of you are chuckling already because we know that things can always get worse. Once transferred to a children's hospital Judah began to improve, he was off the ventilator and gradually downgraded to breathing oxygen through the lovely nasal prongs.  Then he stopped smiling, wanted to sleep more often, and on October 21 he was struggling to breathe.  The decision was made to put him back on the ventilator to give his weary body a chance to rest and heal.  My heart was a stone. To see him progress so far only to go back on the ventilator pressed heavily on me.  This time his time on the ventilator was increased, which meant more sedation, more muscle loss, and an increased risk for pneumonia. When the narcotic wean occurred it was so sudden that he went from twitching a finger to trying to sit up in bed.  Hot tears flooded his face as he tried to swallow with the ventilator tube down his throat.  Helpless. He continued on like that for three days.

On October 31 he went downhill quickly. His breathing was again labored, his oxygen numbers were too low. Judah's health was so fragile that we weren't sure if he would keep breathing.  However, I promised my kiddos that I would meet them at my parents church for their Trunk or Treat so out of the room I went.  We hadn't made it Facebook official, how badly off Judah was, but when I arrived at the church a dear friend read it on my face.  This beautiful girl hugged me as I cried onto her shoulder. No words were passed.  Just an embrace that I'm sure was straight from Heaven.  After  spending time with my little ones I went back to the hospital. My amazing husband had kept watch over Judah. The night shift was on duty and the charge nurse updated me on Judah. Pneumonia and it was worsening. His traumatized lungs and airways were giving out.  I ran on to his room and collapsed into Mike's arms.  We held his hand as I soaked his bed with tears.   The doctor wanted to give him one hour. Sixty minutes to keep breathing. The respiratory team were pumping his body with medications to keep him going.  And what did I do?  I went into the bathroom, prayed that somehow God would be glorified through this, and donned my Princess Leia costume complete with those big beautiful hair buns.  I walked the halls, praying, and taking pictures with staff and patients. I even hopped on Judah's bed and whispered that he needed to use the Force and that there was no dying when your mom is Princess Leia.  Bonkers, I know.

One hour turned into two, which became four. Still breathing. Eight hours. Twenty four. Still breathing.  Hours turned into days as Judah grew stronger. He began to move and weeks later he took his first steps since being under a paralyzing agent.  November 23 we walked into our house.  And we tucked a very tired little man into his own bed.  The first time in 42 days. 

Whilst the 42 days were difficult to say the least, I would not replace them.   During that season my heart had to lean into Daddy God like never before.  If not for Him this journey would have been crushing.  But by His grace He has revealed His faithfulness a thousand times again. If you are facing a difficult journey, take heart. Our good Daddy God is there with you. You are never alone, forgotten, or unloved.

xoxo Jessie

May The Force be with you.  

May The Force be with you.  

#starwars #TheLittleBits #TheLion

Just Breathe

Someone asked me the other day how I was so calm during everything that was happening with Judah.  I confess that some days peace and fortitude of the heart are easier to maintain than others.  Case in point- My first panic attack was six years ago. Physically and mentally exhausted I crumpled into a hyperventilating heap.  A second one hit perhaps a year and a half ago. Since October I've had six, with the most recent one being this morning.  Here's the story. Jasmine and I share a shirt, we both love it.  It's a cactus giving away free hugs.  Mike and Jasmine have this thing when she's wearing the shirt that he will come in for the hug and feign being pricked by the cactus character. She dissolves into laughter. I very much needed a laugh this morning so the shtick fell on me. When Mike pulled away, seemingly in great pain my heart set off on a sprint and I began to instantly hyperventilate. Our pantry became my pillar as I went through the steps to shut down the attack.  It's funny now.  We were joking about it this evening.  Life is much more humorous when one is not struggling for air.

There are good days and bad days on this journey.  And I think that part of my lesson to be learned on it is this- I am not my bad days, and His mercies are renewed every day.  Just breathe it in. When a bad day comes remember that it is just that, a bad day. It does not have to be your every day. Tomorrow holds the possibility of good things. So at the end of a bad day go to sleep. And when you awaken the next morning- breathe, believe, and repeat.

I still like this shirt. 

I still like this shirt. 

Ugly Crying, a Facebook Message & an Adventure Called Family

So this morning I was drinking a cuppa of Earl Grey tea and sporting toothpaste on my right pinky finger, whilst The Little Bits frolicked about the house.  I was about say something to quiet them down when today's date struck me.  September 16, 2015.  A year ago today we received a Facebook message from a dear friend of ours that changed our lives.

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When the message came through I instantly shared it with my hubs (how thankful I am for him).  We responded back nearly instantly with our positive response.  And for us that night our family grew by three.  It wouldn't have mattered what sort of problems the kiddos could have had, we said yes and we never go back on a yes.  

Now that I think about it that morning Ben and Jasmine had spontaneously burst out in prayer for whomever we were going to add to our family.  I distinctly remember ugly crying. Mascara running, snot dripping, Ben and Jazz hugging me.  What a sight we must have been. A blubbering, late to school, joyous mess.  (I'm ok with that)  My life is at times a bit messy, and loud, sometimes my patience gets pushed a bit farther than it would like.  And again I'm ok with that.

Do you remember those Choose Your Own Adventure books?  You would read the book until it came to a decision by the main character and then you would choose what the character should do. You would make a choice and turn to the specific page and see the outcome of your decision.  Honestly, I killed the main character off at least 6 times before I figured out how to finally make it to the end of the book!  It was infuriating!  Life is a choose your own adventure. Don't misunderstand me- God has plans and purposes uniquely crafted for every single person, however living out that calling is up to us.  This is the life that we have chosen.  And I love it!

 

Who Likes Free Stuff?

We are giving away cd prize packs and entering is so easy!  From now through September 10 listen to  our new song "Constant Ways" , leave a comment and that's it!  Every person who comments is entered into the giveaway.  Winners will be randomly selected on September 11 and announced via Periscope (@JessicaBittner) from Disney's Night of Joy!

Enjoy!

 

Arthrogryposis Multiplex Congenita

That is a mouthful. Around our house we call it AMC or Arthro for short.  Those three words affect 1 in 3,000 births by U.S. statistics with European numbers being closer to 1 in 10,000.  In Latin AMC literally means curved joints having effect in multiple areas of the body from birth.  It is not progressive and will not worsen over time.  It is a spectrum of sorts as some children are more effected by AMC than others, especially if they are diagnosed with amyoplasia. Kiddos with AMC may have other health problems with their nervous system , muscles, heart, kidneys, and other organs.  Tragically nearly half of the babes born with AMC do not see their second birthday.

Our two eldest kiddos, Ben and Jasmine have AMC.  And its effects can be seen in so many aspects of their lives.  When we first met Ben in China we were amazed at the things that he could do.  His arms and knees didn't bend and his hands were Aguilar like resulting in limited functionality of his fingers.  Yet this amazing boy had figured out how to feed himself, walk, and drink from a cup.  He has been home for three years and the progress that he has made is incredible! Ben can now get himself dressed independently! He wears braces on his feet during the day and braces on his hands at night.  Ben had surgery to fix his arm into a bent position whereas it had been rigid and straight to give him more functionality.  He also brushes his own teeth and can manage bathroom situations by himself, save washing his hands.  And we are currently looking up ways to help him achieve that independence as well.  

Jasmine has Arthro and bilateral club feet, and sadly those two conditions work against each other.  She wears massive leg braces during the day that hold her feet in the proper angle and help to keep her toes from externally rotating.  The braces connect from her toes all the way to a belt that secures around her waist with metal bars on the outside of her legs.  She had surgery at three months old and has been in braces ever since.  She didn't crawl until she was 18 mos and began walking at 2 years.   

Throughout everything that these two have been through their tenacity, spunk and refusal to give up amazes me. We rarely hear "I can't do it." pass their lips.  Their smiles and genuinely cheerful nature are such a blessing! It is my great joy to parent them!!!!  

Today, June 30 is Arthrogryposis Awareness Day and as a family we are wearing blue to raise awareness of this condition.  I even went Pinterest crazy and made our family matching shirts for the occasion.  And yes, I will be posting pictures of us in our blue garb later on in the day. 

If you would like to learn more about AMC I would encourage you to visit www.amcsupport.org  

 

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Bittner Party of Seven

We are officially a family of seven now! The adoption of our newest three babies has been finalized down in Lee County.  To be honest, the whole court scene was a little underwhelming.  Don't get me wrong I am thrilled that David, Annika, and Judah are Bittners and having the adoption decree will most certainly make life easier; but from the moment we said yes we have felt as if they were ours.  

I would love to say a massive thank you to some people who were integral in bringing home our babies. The foster parents to our twins and David- thank you for pouring yourselves into caring for David, Annika & Judah. Your selfless love is inspiring! I will be thanking God for you daily!  To the amazing woman who first introduced us to the kiddos, their adoption would not have happened without you, literally. You had a tremendous impact on my life as a teenager and now into my adult years.  What a treasure you are!  To our caseworker who handled the paperwork and made sure that every t was crossed and I dotted- thank you.  You have been our lifeline as we navigated through the foster care system.  You are the greatest! To our kiddos Guardian Ad Litem thank you for watching over our kids and being their voice.  Their best interest has been your only interest. Your tenacity and generosity are boundless and we thank God for you!

 

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We Said Yes

Life here at International House of Bittner has changed forever- in a completely wonderful way!  In February three precious children came home to us.  Yes. I said three.  We now have 5 Little Bits from the ages of 3-7 in our family!  

The Little Bits (from L-R):  Jasmine, Ben, David, Annika & Judah

When we first announced to our family and friends that our household was expanding the most common expression uttered was something akin to this- "You have 5 children? Why would you say yes to that?"  

Here's why-  Two years ago I had a recurring dream.  For nights upon nights I would dream of a little one crying out for mommy. The voice was unknown to me, and honestly I can still replay it in my head.  The dream rattled me.  The feeling that there was a little child crying out for their parent and hearing no response affected me to the core.  One day after the close of a church staff meeting, I confided to my Pastor "the dream".  Hoping for some profound words of wisdom, he surprised me with a question. "What's your answer?" he said.  My answer?  I was coming to you for answers!?!? Taking my leave, I ran to my office where I shut the door and knelt down. For a while I just stayed there in silence, my hands lifted. And then with tears streaming down my face I said yes.  "Whatever it is Daddy God, whatever children come across our path, my answer is yes." My heart nearly burst as holy approval seemed to rest on those words.  That night at home I relayed to my amazing husband the events of the day and proving that he's just as crazy as me- he said yes, too.

Fast forward to this past August- upon completion of parenting classes for entering the state adoption process we received a message from a dear friend.  In it she asked if we would consider a sibling group- a set of twins (one boy, one girl) who were 2 years old and their 3 year old brother. This time fully awake the child's voice echoed in my soul. I quickly showed the message to Mike and typed back, "Yes! Absolutely!!"

Our David came home on January 30 and the twinsies on February 14. What an adventure it has been!  We've enjoyed glittering family moments as well as a few moments that have prompted less than glittering emotions to be felt.  To be honest, some days have been downright terrible.  But our yes is still (and will always be) a resounding yes.

Family is an adventure. Is it difficult? Sometimes, yes. But every difficulty is overshadowed by the opportunity to shower love upon precious babes who are in need. 

If you have considered adoption, send me a message- I'd love the chance to answer any questions that you may have.  

xoxo  Jessie


5 Lessons From a Special Needs Mom


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This past week Team Bittner attended the annual Arthrogryposis Multiplex Congenita Support Confernece. Both of my kids have Arthrogryposis Multiplex Multiplex Congenita. It's a mouthful to say, but it literally means "hooking joints" and causes tightening of muscle fibers specifically around joints. Two and a half years ago I never knew the word Arthrogryposis existed, and I was completely unaware of how it would impact our family. However, I have learned a few things along the journey...


1. Life Can Be Taken At Any Pace

Just yesterday Team Bittner was strolling through the Mall of America with Jasmine and Daddy in the lead and Ben boy and myself bringing up the rear. Jazz was moving along at a good clip but Ben and I found ourselves falling further and further behind. My initial thought was to hurry along my little man, but one look at his awestruck face quickly dispelled any inclination to speed up his step. Instead, we told the others to keep going and assured them we were all going to arrive at the same destination. It doesn't matter how fast we are moving through life, we only need to be mindful of our destination and enjoy the journey.


2. The Importance of Stretching

Both of the kiddos have undergone surgery to loosen tightness in their joints. Jazz at 3 mos old (gulp) and Ben nearly three weeks ago (again, I gulp). The most common post operative advice was to stretch the affected joints after an appropriate time for healing. Confession: stretching my kiddos is not fun. There is discomfort involved in varying degrees which causes the waterworks to spring forth. We explain to them that stretching will help them reach to their fullest potential. Yes it's painful, yes it's not fun to go through, but yes it is necessary. No one was ever intended to live a small life. Stretch, reach, work through the pain and grow into the best version of you.


3. Impossible is Nothing

During the AMC conference we meet children and adults from every end of the Arthrogryposis spectrum. Many parents were initially told that mobility for their child would be impossible due to the severity of their condition. I beheld those same gorgeous children scooting around the floors smiling whilst being very mobile. My arms wanted to hug every last one of them. A bit more personally (pun intended), my Jasmine had the diagnosis of persistent vegetative state given while still in the womb. If you have seen the dazzling floor show that is Princess Jasmine you will know that the only persistent thing about her is her unstoppable nature. She never stops moving or talking- she even talks in her sleep! What had been deemed impossible became a glorious testament to the power of the unfailing God.


4. Look to the Author of Life For the Final Word

Many of the parents I spoke with this week had been told that there was nothing to be done for their child. Some of the senior members recalled that their parents were told to institutionalize their Arthogryposis stricken children and forget about them. The common thread through so many of their stories was that the families refused this advice and sought out a different opinion. One family in particular had been wrestling with the pronouncement of Arthrogryposis after the birth of their child, but on their way home from church felt so impressed by the spirit of God to begin speaking out the word over their child. In a time of hopelessness they sought out the God of all hope. They trusted His word and are seeing their son, now a happily married father, absolutely flourish.


5. Strength is Found in Community

My favorite thing about attending the AMC conference was watching my kids form relationships with other precious AMC kiddos. Jasmine our little fashionista gushed with excitement when she saw another little girl who had the same shoes! Normally women would shudder when making the same discovery but Jasmine wears only one type of shoes specifically designed to fit over her leg braces. In something so small as shoes Jasmine found that she was not alone. Community is a powerful force. You could see it on the faces of my children as they were running around with other kids in braces, casts, and AFOs. These babes were like them. And I am sure that some unspoken cry of their heart was answered as they learned that they were not alone.

And now to you. I hope that these life lessons can help you wherever you are on this journey. Know that you are loved, you have great value, and you are never alone.

Jessie

(Proud Mama of the Little Bits)

What ya got there? Enthusiasm in The Church

In my history of being a pastor's daughter/church girl/worship leader I have attended many church services. I love seeing the church at large, especially when she is worshiping. It's a thing of beauty!

In my experiences I have noticed that some worship leaders shrink away from the spotlight. They decide to play it safe, and hold back while leading. Instead of embracing their role as a full on joy-bringer they check enthusiasm at the door. They fall into the trap of self consciousness which robs leaders and congregants of the confidence and joy that comes from fully embracing who God designed us to be. 

Let's be honest, isn't it much better to see the people of God show up to a service ready for a full on encounter with God?  Me thinks yes!  We have the privilege of attending church with a long time friend, Mike (not my hubs but one of his best friends). And I LOVE worshiping next to him! He is a full on, holding nothing back, enthusiastic worshiper. It's beyond incredible, it's contagious!  When Mike, this tall, smiling, enthusiastic man worships it stirs up those around him to do the same. It only takes one to break rank and give others the permission to do the same. When we are open and joyful it sets people at ease and encourages them to approach our times of worship with wide open spirits.  Consequently, our hearts are ready to receive from God all that He has for us when we have already lowered our defenses.

Enthusiasm not only benefits those in the congregation but those on the platform as well. Leaders are not perfect. Those on the platform may be walking through a valley and your joy may be a much needed blessing. Your enthusiasm can encourage and inspire faith and hope in your leaders which in turn can encourage the rest of the congregation.

As you gather with fellow believers this week be mindful of what you bring with you. I don't know about you, but I ever want to be the one that upon entering The House people want to know what I've got. Let's turn up to church ready to go. Not caring what others think, or hemmed in by self consciousness but with full on enthusiasm.

Are you ready? Let's bring it!

With mucho joy!!!!!

Jessie the Jumper

 

 

Worship & Sacrifice

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Let me start by saying that I do not believe that there are any insignificant details in the Bible. If something is written into this precious book it is there for a purpose. With that being said, do you know where the word "worship" is used for the very first time in the Bible? It's in Genesis 22:5. Bible scholars use a method called the principle of fist mention, which states that whenever a word is used for the first time that there is a significant connection between the word and whatever setting or scene it is placed into that provides insight into the meaning of the word.  The very first time "worship" is used in the Bible is in Genesis 22, the account of Abraham and Isaac going to Mount Moriah. To fast track the account Abraham has been told by God to take his son, his only son to Mount Moriah and offer him as a sacrifice. In verse 5 they arrive at the mountain and Abraham tells his servants that he and his son Isaac will go on alone to worship.

Upon reaching the top of the mountain, Abraham builds the altar and proceeds to bind and place his son upon it. As he is poised to surrender the one thing that he holds most dear the Angel of the Lord stays his hand and provides a ram as a sacrifice exchanging it's life for Isaac's.

There are so many intricate details woven into the fabric of this account.  I really could geek out about it for quite some time.  I am trying to contain it because I want to focus on two things- worship and sacrifice.  Based on the Genesis 22 narrative we view worship as connected with sacrifice.  As worship leaders (and everyone in The Church is a worship leader regardless of your position on or off the platform) we must ever be mindful that worship without sacrifice is just entertainment.  We are not called to entertain but to worship in spirit and in truth.  A mandate that is frankly quite humbling and at times challenging.  That is why we must ever fix our eyes on the cross- the Great Sacrifice and our Savior who exchanged His life for our freedom.

Worship should ever and only be Jesus-centered. Our songs and expressions of worship should lift up not only the name of Jesus but the perfection of Jesus' sacrifice on our behalf. It’s easy to get caught up in issues surrounding worship, but our focus should be on Jesus Himself.  On stage worship leaders can sing the wrong words, instruments can be out of tune but at the close of our worship service we only need to ask one question- was Jesus glorified?  If the answer is yes then we have succeeded in our God-given assignment.

My prayer is that the church would resound with songs that boast in the finished work of Jesus Christ and that you would be challenged and inspired to worship sacrificially no matter the role you may have.

With Much, MUCH Love!!

~Jessie