The Raging Storm

Isn't it amazing to know that no matter what we face in life that God is ever present? When life is easy and no obstacles are in your way, it's easy to just casually say, "yep God's good." It's almost as if it's a pleasantry these days.  Isn't it? We say it as easily as we say "hello" or "nice weather today".   But once you've been through a storm you know that God is more than just good.  I'm talking about the kind of storm that rages in your heart and threatens to destroy everything you hold dear.  The kind of storm so dark you don't know if you'll ever see the light of day again.  It's those dark, angry clouds that roll in over your heart when you lose a child, when a marriage fails, when pain and illness are lingering day after day.  I've not only been in the middle of several of these storms myself but I've weathered through several of them with the people around me.  I've clung on to life when it wasn't just the stinging pelts of sorrow hitting my face but the powerful current of doubt, anger and sorrow trying to pull me under.  

Once you've been in a storm that has rocked your world to the very inner core,  you know that there is only one way out.  There's only one sure thing that remains and never ceases to be there. 

And that is God.  

When my daughter was rolled into surgery and her very life was on the line,  I had to give her over to a stranger, also know as the surgeon.  I had to place her in this (wonderful) man's hands and let go.  At that very moment I wanted to scream a scream that could be heard round the world.  I felt like that scream would wilt flowers and trees and cause sky high buildings to crumble.  I felt like if I let that scream, from deep inside my heart escape my lips, that it would never end. 

Do you know and have you felt that kind of pain and anguish? Where you feel like you're underwater waiting to gasp for air?

The best way I could describe it would be that part in the movie Twister where they are in the eye of the storm and all they can do to survive is to take horse reigns and strap themselves to pipes that were buried deep in the ground.  Do you remember that part?  The wind was unbelievable as it tore down the building that was sheltering them.  Their bodies were tossed up into the air like rag dolls as the storm raged.  But funny, if you should watch that movie again and see that very part, their faces are calm.  There's no screaming or wailing but just a sense of peace.  I know it's just a movie but it's so true to the storms that rage in our lives.  When I kissed my little girl on the forehead, instead of letting that scream escape my mouth, I spoke life over her.  I called for the King of Heaven to fill up that operating room and to have His angels encamp all around her.  Honestly I could not have walked out of that room and left her lying on an operating room table and taken my sanity with me any other way.  Was there an unbelievable amount of fear? YES! But there in that hospital waiting room a peace washed over us like a rushing mighty wind.  Until that moment in time I had no idea that the peace of God could shake a place silent.  My heart, although aching for my little girl, became calm.  I was the one who was being secured down in the middle of the storm.  Jesus was what I tied my heart to because He is what I am rooted in.  This is how I kept that horrible storm from emotionally destroying  me. 

Once you've been through a storm as intense as this one (or worse) you are left with two choices.  You can try to out run the storm, but we know that it's pretty hard if not impossible to outrun something that intense.  Or you can tether yourself to the Almighty Healer and Protector of your heart.  You can count on Him to hide you in His shelter and not let anything by any means harm you.  

When storms like this hit, there can be a lot of devastation left around you. There might be pieces left to be picked up and many things that have to be rebuilt - but with Him you can rebuild and restore your life.  I will not pretend or portray in my writing to you that life is full of happy easy road at all times.  But I can tell you that once you've been in the eye of an incredibly intense storm you know that you are at all times in the presence of the king of Kings.  You may not see Him but when it hits-- you KNOW Him, you FEEL Him and you have the opportunity to let Him sweep His power over your entire situation.  These types of storms don't leave you the same, do they? They change the entire course of your life. Once you let Him help you rebuild and restore, you are a new, incredible person that is not easily shaken by storms.  Your hope has become eternal and your life has new focus and new direction.

If you are currently in the eye of a storm in your life, whether it be a death or depression, illness or the ending of a relationship -- know that He is there to protect your heart and give you peace that passes all understanding.  He will guard your mind from the stress and hurt of the situation that might other wise leave you emotionally broken.  Rest in Him and let Him take over battling the storm for you.  You in yourself cannot fight it but He can cause the winds to calm and the storm to stop raging. Take a deep breath and let his peace enter your heart.

I have been through many storms and because of what He's brought me through, I have never been more confident in my King.  And what He has done for me, He wants and aches to do for you.

img credit liberty news.com and google images 

A song of peace is being sung over our family and it is such a breath of fresh air. And all it took was a whisper of hope.

Only Tough Girls Have Scars!

Tasia and her little friend who is 4 years old have a little saying, "Only tough girls have scars!" They both have scars that go down their entire belly showing the battle that have fought and won against pancreatitis. Tonight I was thinking about this and I realized this is so much deeper than we even realized. We are ALL tough girls, aren't we?  We all have some sort of scars.  Some of us have a physical scar showing surgery or injury, some of us have stretch marks to show that we have carried some of God's most precious gifts, some have scars showing abuse from someone they trusted and others have scars that you cannot see at all - scars of the heart.  The scars on the heart are most often the most tender to the touch. But as we come through our battles in life - whether it be a physical one like my child or an emotional one brought on by someone in your life, there is most definitely healing.

Healing takes time. There's no way to get around that one. Sure we can add ointments, creams, or go to therapy to assist things, but time is always involved in healing. Some of the things we do to heal can speed up the process and other things can slow it down. Bottom line...there is no amount of food or drugs or alcohol that can take your pain away.  The only true remedy for your pain is the healing touch of God and time.

Going through 2012 was most definitely the hardest time in our lives. It was God who sped the time by, held us together mentally and eased the physical suffering.  Tasia and I both left 2012 with scars. Hers are visible, mine are not. Both are healing marvelously thanks to the loving touch of the Father and time.

One thing about scars is that you are left tougher than before you had the scar.  Tasia's belly is physically stronger now that a scar has been formed. I read that  "scar tissue can become stronger and better able to tolerate stretching forces through a process called remodeling. Scar tissue remodeling occurs as you start to stretch and pull on it. The stretching of the scar tissue helps to align the collagen fibers to allow them to return to normal. This realignment of the collagen fibers makes the tissue better able to tolerate the forces that are placed on it during the day." This is so much the same as when we stretch ourselves emotionally as well. We place ourselves into God's hands and let him mold and heal us.  We in turn are stronger to tolerate the strain that is placed on us in the future days ahead.  

Have you ever stepped back after the healing process has happened and looked at how much tougher you are?  I for one feel like wonder woman!  That of course takes time and a continued filling from the Father. But it is most definitely possible!

I pray that my daughter will continue to sport her scar as a symbol of the hero she truly is. To show the world she went into battle and came out victorious. She looked fear in the face and said, "bring it!" I hope to show my scars as well and help those hurting to heal and to remember that they too are TOUGH GIRLS!

the year we risked it all

this day is full of so much emotion....

 I have been anticipating the flood of feelings that today would bring all month long.  Today is the END of a very intense year. Some might look at it and say it was a bad year - full of tears and pain, but I say it was a very hard year filled with triumph and victory. It was a year that my hearts call of bringing HOPE into our lives was fulfilled.  It's a year worth celebrating!

For almost 10 years I have been waging war on a particular beast in our lives.  For 10 years everything around me screamed to give up and mocked me as it tried to rip our hope away. For 10 years I spent many nights with a tear soaked pillow pleading with God to give my daughter a chance to know what a life without pain feels like; to give my husband the chance to shoot for all his dreams and be the "unstoppable" force physically that he already was and is mentally;  to not go to bed fearing waking up to a 2am rush to the nearest emergency room; to not fear every single stomach pain because of what it might mean to them; to know that cancer will never be present due to this horrible illness.

This year we risked it all to live.

And this year, we won the war!

I try very hard not to think on the events this year because the intensity of the events literally take my breath away.  Hard doesn't even begin to describe this year.  I feel like God has been not only changing our family but also changing me personally.  He's released a lioness in me that is willing to fight ferociously, He's showing me that I am more than I thought I was. He is refining me and stripping away the hardness the years of fighting produced and bringing out the purest joy in my heart. When Tasia was wheeled down the hall to surgery, my heart was wheeled down the hall to be worked on by the greatest of physicians.  I feel whole now. I feel like with Him I can do anything.  I feel like standing on the tallest mountain and declaring 

God is with me, I shall not fall! 

(img credit http://www.wallpapersbuzz.com/)

I am scared of 2013, I can't lie. I am scared to expect normal.  Anyone who knows us knows we do not live "normal.  But I am comforted as well knowing that we never ride into battle alone. If our God is for us, who can stand against us?! 

I feel like something great is rising up for our family. I don't know what it is... but it will be great!

Blessings to you all for this brand new happy year,

Jillian

First there was HOPE and now there is TRUST...

It's been awhile... okay a long while.  2012 has proven to be the craziest year of our lives for sure! I tell people all the time, it's most definitely been the hardest year but it's also been one of the greatest years! Our family is free from something that has followed us like our own shadows for years. We may not always see our shadow but when the sun shines in the right direction you know it's always looming over your shoulder.  I told Isaac last night that over the years I have always felt like we would get a break from pancreatitis and then as soon as we would let down and sigh a breath of relief, the rug would get pulled out from under us and we would be back in the midst of it.  But yesterday we realized 

there is no rug anymore! 

There's no rug! It feels so good to not be stalked by an angry disease like pancreatitis. Don't get me wrong either, life has its ups and downs because that's just the nature of this fallen world.  As most of you know my Grams died in August. She has been a life-line to me my entire life. She believed in me when I doubted myself, she cheered me on in passions and she taught me what it is to be a woman of God. But the most amazing thing is that she was ready to go to Heaven years ago... and her body tried to take her out time and time again, but God and Grams had a different plan. She knew she was called for such a time as this. She knew that her purpose was to pray my family through the fire... and that is exactly what she did. We returned home in July and in August she moved to Heaven and she knew her Punky (me) and family were safe. Thank you Grams, from the bottom of my heart, thank you.

In September I was laid off from a job that at I loved. A job that saw me through tough times and I worked my tail off for. At first there was hurt in my heart when I began to see it coming, but then God opened my eyes to what truly was happening. He was not only saying, "Jillian, it's time to rest" but also "Keep trusting, I have a perfect plan for you." 

And you know what? 

I have never been happier in my entire life! My life is filled with family, fitness, music, cooking and time to reflect on what has been and what is to come.

God gives us sparks of hope and when we fuel those sparks with trust they become a flame that ignites a life of success through faith.

img credit - mindstep.deviantart.com

XOXO

Jillian

and the healing continues

I think all of the sudden it's hitting me. The joy, the stress, the relief, the pain. It's intense and it's all at once.  I woke up this morning having nightmares of nurses trying to start an iv 40...50...60 times on Tasia.  I startled awake remembering the trauma of all the years past. I was brought back to one of the most traumatic moments after her surgery and panic hit me as the horror of what happened in that radiology room truly hit me.  I cried for what she has gone through and at the same time I cried for what will never be again...

How can I feel such pain and joy all in the same moment and same breath?  I should probably talk to someone about these crazy events in our life to help me emotionally deal with them now that the storm has quit raging and quiet has set in. 

I would do anything to remove the pain that she has suffered.... to erase it from her heart and mind. I know only God can do that though.  I've done my part to remove it from her body and hold her through the journey.  Now I need God to whisper His quiet healing over our hearts.

I randomly grab her and hold her just because I am so amazed by her strength and beautiful soul. I crawl in bed with her just to hold her close to me like we did everyday and night in the hospital recovering.  We are closer than any mother and daughter could possibly be because we have conquered death and life together with God guiding our every step.  I am the luckiest mama to get to be that close to her child but I will tell you we walked through fire to get here.

Today more than anything, I am overwhelmingly thankful to be here watching her go to school without pain and truly loving and enjoying life.  Time is healing our pain and as He healed her body, He will heal our minds and hearts. 

Days after diagnosis of Hereditary Pancreatitis. She had been air lifted to Denver and they were telling me that I couldn't go on the flight in case she might crash. I was of course on that flight. Just try and stop this mama...

Being air lifted last fall again to Denver.

Out of surgery... the first moments of taking her life back.

Smiling through it all.

Days after surgery.

My beautiful girl is now free of this pain and loving life!

Forever best friends

Still A Part Of The Beautiful Journey

I was just driving down the road to head to my bank and as I looked down that road I noticed it was the road towards the hospital. I was immediately taken back to all the times I had flown down that road to rush Tasia to the hospital and tears began rolling because it all of the sudden hit me. I will NEVER drive this road again for the same reason. This is now JUST the road to the bank!! Tears almost prevent me from writing this but I just had to share this little piece of this emotional journey on finding our new healthy life.

This is the end of Part 1 in The Story Of Us and I can't wait to see what the next chapters hold. Stay tuned...

XOXO,

Jillian

Day 10 - There's no place like faux home...

Well here we are at day 10 and I am sitting at my work desk staring out at a stormy sky thanking God that my ENTIRE family is asleep all around me.  Isaac got discharged from the hospital last night around 7:30pm and we are so very thankful for that!! For any of you not familiar with this surgery coming home has it's own stress.  It's a good happy stress because he's outta that place but it's the "Home Care Scramble" as I like to refer to it. LOTS AND LOTS of meds and schedules. LANTIS and TUBE FEEDS AND BOWEL MEDS - OH MY!!  He is on 24 hour tube feeding until the doc gives us the green light to start on clear liquids.  This doc is very set in his ways about tube feeding strictly for weeks and then proceeding to food but as we've seen with Tasia, doing things differently has great outcomes. So please pray with us that he will have an open heart to let Isaac start eating soon, as he is ravenous!

I was up with the birds this morning trying to get some work done so that I can take Isaac to his first clinic appointment. I work remotely from a laptop while away from CO - and yes I work for a really awesome company!! Technology is my friend and I am so very thankful that I have the type of job that is able to be done by email, webcams, ipads etc.  God has blessed us in EVERY area. Shout out to my co-workers that read this... Haaaaaaaaaaaaaaaaay!!!

I will wrap this up now and give you a more detailed report of what is going on later today.  I love you all and thank you for your prayers!

How do ya like Hipster Dorothy?

I'm diggin' it!

XOXO,

Jillian

HOME

Thankfully we made it home. We couldn't be happier!!!

We also couldn't be more exhausted. So I am going to take the next few days to uplug from the blog, facebook and and my phone. I feel like I need to rest for a little bit to make sure I don't get sick with a cold or anything. I also just need some time with the fam. So until next week I will leave you with these happy pictures of my very happy children.

XOXO,

Jillian

A Love Story

THE DAY AFTER TASIA GOT OUT OF THE HOSPITAL SHE WROTE THIS FOR ME.

 I WILL CHERISH IT MY ENTIRE LIFE!

---------------------------------------------- 

Dear Mama,

This is for you because is reminds me of the 900,000,000,000,000 different ways I love you.

THE SAD CLOUD AND THE HAPPY SUN

By Tasia

I am the cloud.

I have had a hard day and I just feel like crying. 

I am sad and lonely, so I just sit there.

You are the sun.

You see me and start to come over

You see what is wrong and will try

to make me feel better.

You ask and I tell you I had a hard day

and that I just feel like crying.

You make me feel better and

YOU MAKE ME SMILE.

You make me feel better and I am happy now

And whenever I feel unhappy

I go to....

YOU!

THE END

I LOVE YOU LITTLE GIRL! I HOPE YOU ALWAYS KNOW THAT I AM YOUR BIGGEST FAN AND YOU CAN ALWAYS RUN TO ME AND I WILL ALWAYS BE THERE TO DRY YOUR TEARS AND MAKE YOU SMILE.
XOXO,

MAMA

Girls Day Out

Tasia and I have felt pretty claustrophobic the last week knowing that our time to go home was right around the corner. The apartment has seemed smaller and darker and it made me realize we needed to get out. So today we ventured to the movie theater and saw Mirror Mirror together. It seemed so perfect because we have always watched Snow White together every single time she's been hospitalized for pancreatitis so what better way to seal the deal than to see the remake of it as one of our last memories of this time in her life. It was just perfect. We even ate hot dogs and nachos and of course washed it down with a big Coke 0. The junk food tasted great - take that pancreas!!!

Afterwards we went and shopped around until she found the perfect "going home dress". A very special person in Tasia's life sent her some $$ and told us to buy her and I something lovely with it and Tasia chose dresses to see her family in for our homecoming. Sigh... She's a girl after my own heart.

We finished the day with her favorite Minnesota drink, a sugar free caribou coffee. Yes, I know she's only 9. I also know there are no caribou coffees near us so it's a MN treat ;)

We came back to the apartment and finished the evening catching up on our favorite family time show Modern Family and we ate pizza too (take that pancreas - ha ha).

I am so thankful for such a beautiful day with my most favorite girl in the world. She's so fun to spend time with and I cherish my relationship with her.

XOXO,

Jillian

ALONE

This morning I woke up and realized...

 Oh my gosh!!! We are going to be doing this again in just a little over a month! 

Isaac, my husband,  will be having the same surgery on June 4th. I know it's the right thing but wow does it feel overwhelming at times.  When I start to feel like this I remind myself of how God has taken such good care of us. I remind myself to put the burden on Him instead of us because He cares so deeply.  I honestly don't remember what I have told you all and what I haven't about this situation.  When we arrived in March to Minnesota for the surgery "evaluation" and 4 days later my husband was headed back on a plane to CO, I was sitting in a hotel room starring out the window thinking how HUGE this situation was. At that point in our journey I thought I was going to be facing this surgery with my daughter alone.

ALONE.

That is such an intense word to me.

ALONE.

 Normally when thinking of that word I would think of it meaning a very dark and loney time. But I was far from ALONE. I remember sitting there and just telling God that this situation felt so enourmous that I couldn't even wrap my brain around it and yet I knew... it was right. I remember so clearly just throwing up my hands and telling Him that He was gonna have to handle this because ALONE in my strength I knew it was impossible. I knew that emotionally I would crumble under the pressure. That day I literally just gave it to Him. Whole heartedly gave it to Him. I spent my days enjoying my daughter and drinking in every happy smile, every elevator dance (yes, we dance in elevators - hee hee), every laugh, every quiet moment because I wasn't sure when I would get to see those beautiful moments again. All I knew was, major life saving/changing surgery = vent, pain, tears and very long time of healing.

I told God everyday that I knew that He could do the impossible. He could give us better than the best case scenario! That week in prayer my mother in law felt like God told her that Tasia's recovery would be REMARKABLE (that's a whole other post i still have to write). She wrote me an email and told me this and even included the definiton of remarkable. I told Tasia this and we prepared our hearts for the possibility of something better than expected. We had nothing really in mind because sometimes I think making a plan in our heads just puts God in a box.  I knew the power of God was going to be at work. I knew that I could count Him faithful to fulfill His word. I stood on that.

Looking back it's amazing to see how we were anything but ALONE. Not only did He orchestrate everything so that my husband and mother in law could be there for the days surrounding surgery but He brought me all of YOU, dear readers! YOU have given me strength too! From emails, letters, texts, calls, FB messages, packages and prayers. I have never felt such love and support in my entire life!  And even if we would have walked into that surgery without our family or all of you supporting us, Tasia and I would not have walked into it ALONE.

We walked in as daughters of the most high God.

We walked in with the angels of Heaven surrounding us.

 We walked in with the Prince Of Peace.

There is no such thing as ALONE in this world unless you choose to be ALONE.

As you all know by now, God was most present in our time of need. He never left us. He never will.

So as we make our way closer towards the next surgery date. I am reminded that we will not be going into this

ALONE.

And with that I am comforted.

XOXO,

Jillian

Courage

 If I could encourage you all to do something it would be to have courage.

  Don't let your path be deflected by fear of the unknown. My grandpa used to say that being in fear is like paying interest on something you may never own.

 Be still and wait on the Lord for the answers you are looking for in life.

But don't ever be thrown off your course by something like fear.

I think this just about sums it up from me tonight.

XOXO,

Jillian

The Surgery Video

I'm sure most of you have seen this already but for those of you who are not friends with me on Facebook... check this video out that my husband made of Tasia's surgery.

If you haven't seen it yet, be forwarned that it brings the tears.

-Click the picture below-

 

I'll take it...

I will take what I can get when it comes to time with my boys while I am so far away from home.

XOXO,

Jillian

Well...

Well they can't all be amazing right? Today was a rough one. Probably one of the roughest Tasia has had since getting out of the hospital.  And I guess if this is as rough as she has had it then we count ourselves blessed! Got to keep it in perspective, ya know?

She woke up very nauseus and having pain. She hasn't had pain in over a week unless she's done too much.  So this confused me.  Where this pain and nausea came from, I have no clue. But it stayed all day long. The pain meds barely took the edge off and nothing helped the nausea.  They say when you go through this surgery you will have good days and bad ones. Well this was a bad one I guess but thankfully now at 6:30pm it is getting better.

We visited the pain management clinic today again and the appointment went very much like the last one.  Tasia was feeling yucky so much ahead of time that she passed out in my arms by the time the doctor arrived.  She was literally so sound asleep that he couldn't even get her to respond much.  I'm sure she looked terribly drugged but she wasn't at all. She was exhausted! I swore to him that usually she is feeling great and I don't know where this came from.  I'm sure he read the rest of her doctors comments in her file about her feeling soooo well and thought, "Yeeeaaah, sure she is."  Ha ha ha! He's a great doc though and I'm happy we are getting to work with him.  He is currently watching Tasia for having migrain headaches and seeing if possibly that is causing the nausea and extreme sleepiness.  He said we will continue to watch it.  Today was supposed to be our last appointment with him but I think he was pretty concerned she was feeling so yucky today so we are going to see him once more next week before returning home.  I hope and pray that Tasia is feeling good and he gets to see her happy little personality before we leave.  Dr. B, her endo, gets to see her bouncing off the walls at those appointments. 

On a very happy note, they dropped her 1x a day insulin again and now to only 2UNITS today!!! Even Dr. B said she can't believe she's down to hardly any only 3.5 weeks out. So there's my note to smile on today!

~Feeling good enough tonight for a little photoshoot~



Now today is almost over. I am praying for a blessed night of rest so that she wakes up refreshed, renewed without pain and nausea again.  I pray for wisdom to know what to do better for her and for peace to know I am doing my best.

XOXO,

Jillian

Mountain Tops and Valleys

I find that so many people tell me how they don't understand why bad things happen to some people. Why do some people go through illness or loss of a loved one and yet others seem to live that perfect all amercian dream?  I won't lie, there was a moment in time after Tasia was diagnosed that I was angry asking why? Telling God that this wasn't what I had planned. I told him that I couldn't stand by and watch my child suffer or live in fear that I may be a widow in my twentys. There was the moment when I realized that I was one of those "hospital mom's" and that my life would likely be spent in fear of "what if".

But I got to the point when I had to shake all of that off. Quit crying about what was and focus on what could be. I had to realize that I was given a gift to walk the most beautiful people in my life through the hardest journey and the biggest valley of their lives. And not just walk with them and beside them but help them climb out of it.

 For 13 years I have researched and prayed my way to an answer for my family. For 13 years I have kept hope alive in my heart. And Tasia is now through the wilderness and climbing her way to the top. And exactly 14 years (to the day) that Isaac and I met, I get to stand beside him as he steps out into a life where pain does not live as he makes his ascent to the top.

 Yes, there have been very difficult moments throughout the last 13-14 years but I wouldn't trade the valley we have walked through for all the money in the world because I get to stand on the mountain tops with my beautiful husband and children and look where God has brought us to. This is a higher moutain top with a better view than I could have ever dreamed of.  Nothing can compare to this victory in our lives! Yes, we walked and will walk through the valley's of the shadow of death but God is bringing us to a place that can only be seen after crossing through that dark valley. We have to cross into this valley again on June 4th but I know what lies beyond is better than our wildest dreams could imagine.

 I know that He will be with us again through every step of it.

(all image credits via weheartit)

Today I find myself at peace with the valleys so that I can truly appreciate the mountain tops.

XOXO,

Jillian

This post is dedicated my family, Malkie, Kristen, Rachel, Beth, Michelle, Scott, and Whitney who have found themselves in the valley and chosen to climb up and out or are on there way to the top. And to all of the families who find themselves in the valleys and are looking for the path that leads upward. He see's your pain and He will lead you through if you just trust Him.

Art therapy

tonight tasia and i decided to paint. we've painted a ton since being on this journey. i think painting and just art in general is soothing to the soul. i am by no means an artist but i think it's theraputic.

tasia's picture reminds me of the tree we wear around our necks. the tree that is planted by streams of water, bearing fruit each season. the leaves never wither, and they prosper in all they do.

it's a happy tree.

tasia's picture.

my picture is for the little girl that we had dinner with tonight. she is around 6 years old and has cancer. she has only about a tenth of her hair and the hair she has is long. she is here with her daddy. everytime she walks by me she brushes her hands down my arms and smiles. her neck has burns from all of the radiation. my heart is crying out for a blanket of healing power to be released on her little body. my heart aches for what she's been through and what she still has to go through.

but i know that there is hope.

my picture.

XOXO,

Jillian

Three Weeks Post Op

Wow... this week has gone by so fast. I started working remotely from MN since we are now at RMDH and I have some time in my days. It's made this week fly by.  Between catching up on being away from work and Tasia's clinic appointments - we are busy!  Tasia is still doing wonderfully.  We have our hard moments but they are mostly from low blood sugar right now.  Her little islet cells are kicking in and working so well already that we can't drop her insulin quick enough. We left the hospital on twenty some units of the long lasting insulin and we are officially at 3 units as of today and have cut out meal coverage. We've had a hard time keeping her blood sugar above the mid 50's! Her little islet cells are ready to start doing their job and are making us work hard to drop the insulin at the right time.  When Tasia has low blood sugar she gets terrible nauseous and throws up.  It makes her feel awful. It seems like we go through that every couple days. Every time we drop her insulin she does great the next day and then those islets cells jump in and match the work and we have to drop again the next day. No complaints though! She's gonna be off insulin in no time. Praise God!

We  met with the pain team this week and they said if we want to start reducing her pain meds we could but not to go too fast. We tried a bit last night and it made for a rough night with a lot of pain- this is something we are not used to at all as we have kept her pain under control very well. So I think we will keep her pain meds every three hours for a few more days and then spread them to 4 hours apart and see how that goes.  They told me not to be in any rush to get her off the pain meds because there's no reason to up the amount of her pain if we can control it. I totally agree.

We are going to have our last few clinic appointments next week as well as have her G tube removed on Thursday.  We will wait one more week just to be extra safe before returning home the last week of April.  It's such a blessing to have her healthy enough to return home to heal but it's really expensive to be having to travel home and then turn around in three weeks and come back again. But I'm not going to complain  - I am just happy she is well enough to go home for a few weeks. We have to be back by the last week of May for Isaac's surgery.  I can't believe we will be repeating this whole thing again but I am thankful we will have it all behind us soon.  I am praying that Isaac handles it so well like Tasia's body did.  I know that God was 100% behind her great experience. We will continue to put our trust in God because I know that he will never let us down.  We are depending 100% on Him for our strenght right now.  He is so very good and faithful!

-PRAYERS- 

That we can control Tasia's nausea until we reduce her insulin. (Although I can't complain that we are having to drop it so quickly!!)

That she has a peaceful sleep without pain.

That as we reduce her pain meds over the next few weeks that it goes smoothly.

That Isaac's body is strong and healthy before his surgery and that he will have peace that passes understanding over him as he patiently waits for his big day.

XOXO,

Jillian

Dear Tasia

I've started to write this post to you so many times but emotion overtakes me and I've had to stop.  I have thought that if I started crying I might not stop.  Not out of sadness though, out of amazement and joy!  You have inspired me my sweet. You have shown me what it is to be truly brave in the most intense circumstances. You have given me the desire to strive for the greatest accomplishment of my life and achieve it. You have given me reason to hope and to trust God with all my heart.  You have shown bravery that only true heroes are born with.  You, my sweet, are an amazing girl and I wake up every morning and look at you and thank God that He chose me to be your mom.  When you were little and your personality started developing I noticed right away that you were very stubborn - a characteristic you got from me. At first this trait frustrated me as we are both so stubborn that at times we would butt heads.  Secretly I've always loved to see this side of you because it showed just how much you and I are truly alike.  But not until recently did I realize that this was a trait that God gave you for a reason. I realized that being stubborn was what caused you to breath over the top of the vent in ICU because you were determined to "do it yourself". It's what made you walk to the end of the hallway during physical therapy instead of the goal given to you of just half way.  It's what made you beg for a surgery that is considered one of the toughest and most painful you can get... because you were determined to get well. I love that about you!

 I admire you dear one because when you could have chosen to feel sorry for yourself because of suffering pain for almost 9 years -  you chose instead to just be HAPPY!  If there was one word to describe you it would most definitely be HAPPY!  You bring joy into the room where ever you go and brighten every one's day with your smile. 

If you have learned anything from this whole experience I hope it's that God will never leave you - never. He loves you so much and wants the best for you. Trust Him with all your heart and delight yourself in Him and He will give you the desires of your heart. Always remember that He is the one that got you through this and turned your life around. He always causes you to win!

I am so thrilled to see your new pain free life unfold in front of our eyes.  You have a beautiful and bright future ahead of you and I cannot wait to see what plans God has for your future. 

I love you Peaches!!

XOXO,

Mama