Last night, when I was on my way home from work, Brooke called me.  She does this often.  Sometimes to ask my opinion. Sometimes just to talk.  Last night was just to talk.  But given the circumstance of rearing a special needs baby whose very arrival was a clear-cut miracle from Almighty God, sometimes when Brooke talks, I walk away from the conversation somewhat overwhelmed by what we discussed.  Last night was one of those nights.  So, nearly an hour later when my husband came home from work, he found me weepy and snotty and barely able to tell him what was wrong.  

This is so hard.  Nearly everywhere I go, people ask me about Haddie Joy.  They ask all of us–Brooke, Peter, her brothers and sister, grandparents, aunts, uncles–everyone.  And for the most part, we answer that she is doing well. That’s what people want to hear.  They like being in on a grand miracle from heaven.  (Pssst!  So do we!)

But the truth is, we don’t really know how Haddie Joy is.  And explaining that is so complicated.  She is gaining weight or, at least, holding her own.  But, compared to other babies 14 months old, she is behind developmentally.  She is sitting up now on her own; however, can fall back if left alone too long. She squirms her way around the floor, but she’s not crawling.  She makes some sounds but nothing recognizable.  She sees a couple of therapists–physical and occupational.  She is making some progress.

She still takes in very little nourishment orally.  Mommie’s milk is still fed to her through a tube in her tummy.  She has progressed beyond being on continuous feeds.  She sleeps well.  She is no longer as timid and fearful of strangers and loud noises as she once was.  (My voice, in particular, was pretty scary for a while there!)

Haddie Joy has some kidney issues that still are under study.  A biopsy has been advised.  The question remains when to do it.  She will need surgery on her eyes in the future.  Haddie’s hospitalizations have been very, very hard on her.  She seems to take steps backwards in her progress after each episode of invasive tests.  So, this isn’t a decision that’s easily made.

Most recently, Haddie Joy is experiencing lymphedema.  One of her little legs is quite swollen.  As I understand it, there isn’t really anything they can do for this except treat the underlying cause.  And since they don’t know what the underlying cause is in Haddie’s case, they are left with nothing to do but watch. Researching this condition reveals some pretty scary possibilities. 

Basically, this is the hard part.  Hundreds of thousands of dollars of medical testing and no one can determine exactly what Haddie Joy’s medical problems are.  They only know that she has an unknown genetic abnormality. 

And Brooke and Peter want answers.  I asked Brooke last night, “Do you want answers because you think Haddie’s treatment will change and things will improve, or do you want answers because you have a need to know?” 

Brooke’s response was honest.  “I want answers so I can find support from other parents in the same or similar circumstances.  I want answers so I can use available resources and don’t have to go out and do legwork each and every time some new issue arises. I want answers so her treatment options will be more clear.”

Brooke also said, “People have put us up on a pedestal spiritually.  Frankly, we don’t belong there.  We’re normal.  We have normal wants and needs. We still hurt and cry and ask unanswerable questions.  And we will have normal tasks that need to be tended to–work, homeschool work, church, family.  I don’t think people get that.”

So, I guess what I’m doing on here today is trying to clarify some things with those of you who have so faithfully supported this family in prayers and love. 

Haddie is better but not well.  She still doesn’t get out amidst large groups of people for fear of germs and bugs.  She still has major challenges ahead of her.  What happens to feeding when Mommie’s milk dries up?  Will her developmental delays resolve themselves over time?  As she grows, will her kidney issues improve?  Are these tests going to cause as many problems as give answers?  Are those scary lymphedema possibilities in her future?  Are there things wrong with Haddie Joy that will be insurmountable to earthly medicine?

Still, when that little sideways grin (that’s so like her Pop!) appears on that little face, we know we are on holy ground, first-hand witnesses to a miracle.  She’s sharp–able to melt grown-ups with a single smirk.  All it takes for me is for her to lean into me and touch me with her forehead.  I’m putty.   

That’s where we are today, folks.  That’s where so many parents and families of chronically ill children live daily.  Just don’t stop praying for Haddie Joy.  For her parents.  Her siblings.  Her grandparents, aunts, uncles, and so many others who have become family to us. 

Philippians 1:3-6  “Every time I think of you, I give thanks to my God.  Whenever I pray, I make my requests for all of you with joy,  for you have been my partners in spreading the Good News about Christ from the time you first heard it until now.  And I am certain that God, who began the good work within you, will continue his work until it is finally finished on the day when Christ Jesus returns.”

Thanks to all of you.  Keep up the good work. 

Fellowship with Creator God – it’s here I’ve found abundant life.

John 10:10b
I have come that they may have life, and that they may have it more abundantly

Fall Into Me

“Rise to meet them Oh zealous warmth;
Gesture! Greater light I birthed

Charge through the long, paint tattered place
Dance across her tear stained face

Touch her senses with season’s spice
Give way no longer, Oh pride of life!

Gold kisses balm the land; Descend!
Transform! Be branded! Beckon men!

Cry out to him who strives; Cry out!
‘It crumbles beneath thy foot, Leave doubt!’

I command thee starkness, dry up deep wells
Plow low the complacent, trod the swells.”

“Oh Broken sod, fear not what’s lost;
New seed lies, beneath thy dross

Breathe deeply, Beloved, Fall into Me
Prostrate thee heart, Stay on thy knees

Exhale resolve; The season peak!
Rejoice I say! Flesh die! Be free!”

Thrust Joy throughout my rattling limbs
“Revive Dry Bones! Be gone, Oh sin!

Oh death, it’s time! I say, Be taken!
Oh Branch, borne down with grief, Awaken!

Darkness Beam! Be zealous! Glow!
Heaven’s Hope; divulge below!

Discern, Dear bough, spite dead of night
Old things have passed, new life shines bright.”

I know this is VERY last minute – but if you are in the area, come join us!

(Pictures to come!)

A tough contraction came.  One nurse scrambled to quickly registered me, another started my IV.  The contraction let up.  Fearfully, I looked deeply into Peter’s blue eyes fully expecting him to answer, “Why?  Why are we here?”

Joy wasn’t supposed to be here.
We prayed.

She came.

I was looking at her.  Looking at her.  She was with us.

They laid her on my chest.  Joy.

Peter, hovering over my left shoulder was whispering, “Cry.  Cry.”  Cry Joy!

Joy cried.

The days and weeks which followed were full.  Full of worry, tears, fatigue, hospitals, praise, tragedy, uncertainties, hard work – trials.

Joy lived.

The word is an image now.  An image canvassed creatively by our Maker, uniquely knit before the foundations of the earth.  But it’s so much more too.
You will show me the path of life; In Your presence is fullness of joy; At Your right hand are pleasures forevermore.  Psalm 16:11

Tonight I looked Peter in the eyes and said, “We made it.”

A year full of Joy.

We thanked God for being so good to us.

Haddie Joy\’s First Year – Happy Birthday Haddie Girl!

“Yes.”

“Oh.  She’s a lot better than that.”

I’ve left you in the dark for too long!!

She IS a lot better – Praise the Lord!!!

It has been a very long, slow process, but I am happy to announce she is doing wonderful!  I told Peter recently, “Her G-tube site (feeding tube site) looks great, good thing we didn’t know how bad it was!”

We have been gradually increasing the amount of milk she can have at one time since we came home from the hospital.  Her first goal was to receive half of her caloric needs in bolus feeds (this just means milk is dropped into a syringe which empties into her tummy via gravity).  This is more like a “real” meal.  I am beyond ecstatic to announce she met this goal a few weeks ago, and is steadily progressing!  Although she is still receiving her continuous feeds through the night (milk pushed slowly through her feeding tube via a pump), during the daytime she receives 5 different meals of almost 4 oz. at a time, comfortably!!!!  No more lugging her feeding pole around with us all over the house, or carrying her feeding pump around in a backpack while we are out on the town!  A great victory indeed

More importantly, Haddie Joy just feels good.  This is a great relief to the whole family.  It is so wonderful to see her smiling throughout the day.

*Sighs*  So, so grateful.

Now an update on her most recent doctors visits -

Yesterday she saw the hematologist (blood doc), nephrologist (kidney doc) and the geneticist.

The hematologist just took blood and is going to check her out for bleeding disorders because of the some of the unexplained bruising she’s had.

The kidney doctor has been monitoring her since her latest hospital stay.  There are a few things going on so far.  She still has  slightly low albumin levels,  protein in her urine and some swelling.  Those things, we hoped, would just be gone by now…but, they seem to be sticking around.  She also has bladder reflux (urine not emptying completely from the bladder and pushing back up into the kidney’s), and  a small cyst on her right kidney.  Neither the reflux nor the cyst are very serious, but lumping it all together with her lab work, it demands a bit more exploring.  They are leaning towards something called Nephrotic Syndrome, which is basically (in this case) kidney disease in the womb and the first year of life.  A biopsy has been talked about, and recommended by some of the team, but HJ’s doctor is being conservative, and not jumping into something that Haddie Joy might have trouble with.  The big question is, will the information from the biopsy change HJ’s treatment?  Probably not.  Unfortunately, the known treatment for this type of kidney problem, isn’t really effective for children with genetic abnormalities, which they feel strongly is the cause of her issues.  Even so, the treatments can be tried without putting her through a biopsy.  So, we are sort of just waiting and monitoring her blood/labwork.

Genetics.  Nothing here really either…yet.  More blood tests ordered.   Clinically, she has been diagnosed with Noonan’s Syndrome.  This just means they think she has it, but can’t prove it.  Not incredibly uncommon….except, with the recent kidney trend, looks like they may be backing off of the Noonan’s Syndrome and exploring some other rare gene mutations (four to be exact, I won’t bore you with naming them) associated with Nephrotic Syndrome.

The part in all of this, which is a bit scary is, over time, the protein loss causes damage to the kidney filters (I think I got that right).  Right now, I’m not hearing that there is too much we can do about that, but we have time, so we can all take a deep breath and wait some more.

All in all, there are three different doctors who feel she may could benefit from information gained by some testing/procedure, but they would have to be willing to sedate her.  None of them are stepping out to be the first.  They all say, “The next time she is put to sleep, let me know and we will, fill in the blank.”  The ophthalmologist also recommended eye surgery for her strabismis (crossed eyes) and eye sight, but last time we talked, he was in no hurry.

And neither are we!

Waiting.  We have been waiting for a long time.  As the specialists, one after another, look at us and apologize for not really having many answers, we just laugh and say, “Oh, we are used to that!”  And honestly, as hard as I can be on these genius minds….I really don’t expect them to know.

After all, has Haddie Joy ever played by the rules?  Do we really expect her to be easily “figured out”?  No!  Besides, I have an intimate relationship with the guy who does know, and yes, it does make me a little cocky.

I wish you could sit with us as the genetic counselor goes over the most recent test results, or as the hematologist explains his area of expertise.  It is mind boggling.  I have said over and over, if all of these great minds would just sit down in one room together for a long while, I’m sure they would come up with something!  But the more I listen, I’m not so sure.  The human body is, well…just wow.  Stop for just a moment and contemplate this next statement, God knows exactly how it all connects.  Amen.

He knows if these experts will be able to figure it out based on what’s humanly known (which is a whole bunch;), and when (if ever).  From one aspect of Haddie Joy’s complicated health to the next, He actually knows it intricately and thoroughly.  He knows.  He’s smarter than these crazy smart experts!  And let me tell you, they are impressively smart.

The best part in all of this waiting? We really don’t have anything to worry about.  Truly, it’s a waste of time.  What I have learned (kicking and screaming, mind you) – we can be praising Him instead.

I know Haddie Joy isn’t well all the way and things aren’t working quite right.  But she sure does feel good now.  She smiles.  And she eats a little.  She takes a pacifier.  And it thrills my heart to see her doing it all.  She loves mommy and daddy and sister.  And her therapists, most days (teehee).  She likes to look at life, and if she thinks you’re not looking, she’ll roll towards it or reach for it.  She is so smart and funny, and yes, a bit onery (I don’t know where she got that from;)  She is perfect.  Fearfully and wonderfully made.

God’s got her still, and what a God He is!  The God of kidney’s and genes and blood.  Yes, He is worthy.  I’m kind of getting used to this waiting thing ;0)

Psalm 145:3
Great is the LORD and most worthy of praise; his greatness no one can fathom.

(6/7/11)

Because her IV went bad and needed to come out, complications (not tolerating feeding yet needing fluids to stay hydrated) were harder to address.  After a visit from the PICC team for a PICC line, we decided not to try it outside of the OR.  She went in to the OR without an IV making it difficult for the anesthesia team to sedate her as safely.  After the PICC team tried without any luck, the surgeon stepped in to put one in the groin thinking this less invasive since the anesthesia team was manually bagging her.  Well, that made her leg turn blue, swell and grow hard…blood was getting to the leg, but not returning.  After treating her for a few days via the IV with IV nutrition and meds she had to go back to the OR (this time at least with an IV) so the surgeon could put in a central line in the chest.  This has worked well so far.

Other than that, she had to have a blood transfusion because of low red blood count (probably from loosing blood from tummy post-op, some she passed and some was drained) and a nephrologist has been monitoring her swelling and concerning lab levels.  The swelling is being treated with lasiks and ablumin, which is added to her IV nutrition.  As they draw labs and check the albumin in her blood each day, they adjust how much is given in her IV “food”.  They do that with other proteins, aminio acids, etc. each day.  Apparently her albumin levels were so low that it was indicative of a baby who has had inadaquate nutrition for quite some time, not a baby who hadn’t had nutrition for one week.  This is puzzling, since she was growing pre-op in length and weight.  The nephrologist cannot rule out kidney disease for sure until she can do some testing when she is getting full nutrition, but so far, she really doesn’t feel like it is a kidney problem.  So one question raised is why the low albumin levels?  Common culprits are nutrition or kidneys, but it doesn’t look like either in this case.  She is going to try and dig and connect the prenatal edema with what is happening now.  Her G-tube site is not healing well.  Probably in part because her nutrition has been so compromised.  She is battling a UTI.  The bacteria found, Pseudomonas,  is sort of unusual in this situation, but not unheard of.  It hasn’t been found in her blood, only her urine – which is very good.  Even with all of this, she has started to perk up a good bit.  Her pain level comes and goes.  She does use morphine daily, but it hasn’t been necessary to use on any type of regimen.  She’s on three different antibiotics, and has labs drawn all the time.  It’s amazing how they use her blood work to basically write the prescription for her IV nutrition each day.  Each day it is adjusted.  One of the nurses called it the most expensive meal you never eat.  That was encouraging.  Ha! We are working up to maintenance levels, which simply means she will be getting enough to maintain healthy nutrition levels.  We are almost there via the IV.  The next step will be slowly, as the gtube site heals, working to full nutrition of milk.  Going home has not been discussed.  It is going to take a while.

Today – 6/21/11

We came home last Wednesday!  She was sent home after slowly see-sawing from IV nutrition to getting breastmilk via a NJ tube.  An NJ (Nasojejunal) is the same as what she had before (NG) except it goes a little further down, past the tummy into the jejunal (intestines).  Our hopes were to get home (yeah!) and keep her at nutrition mainetnance levels for one week, let her tummy rest, G-tube site heal, and go back in a week to assess the situation.   Tomorrow is one week.  We will see the surgeon.  The nephrologist also wants to do a bladder reflux test to see if the bacteria found when she had the UTI is possibly caused by old urine relfluxing into the kidneys, then going back into the bladder.  Old urine grows bacteria, so could be a possible explanation for the type of bacteria found during her hospital stay.  She will also monitor her blood and urine levels when her nutrition is back up to par.  At birth Haddie Joy also had a very small cyst on one of her kidneys.  This was found in her first few days of life, but not alarming.  The nephrologist wants to explore this a little more.

Other than that Haddie Joy is doing pretty well.  She is struggling with teething and wanting the process of eating/nursing (she still can’t eat with her mouth).  I also believe she is a little gun shy.  It will take her a while to get used to people other than mom and dad.  In general she spends a great deal of the day fussing and crying.  I hope in time she will get better.  She is sleeping well, and that is a praise.  The continuous feeds and no meds have made it a little easier on Peter and I.

On a side note, Alex will only be here until Saturday.  He will be leaving for Texas where he will do a bit of training and then on the first of July he  and his brother Isaiah, along with several other youth/adults will board a plane to the Ukraine where he will do mission work for the rest of the month.  Sadly, we weren’t able to spend very much time together as a family – but we are excited for his oppurtunity!  Ethan is also on mission right now in Illinois and he will be serving in New Albany, Indiana the first week of July.  Please join us as we lift up his these groups  in prayer.

Thanks to everyone!!

Since yesterday Haddie Joy has been on continuous pedialyte only. No milk. Continuous just means that she has a steady, very slow flow running through her tube 24 hours a day. Her nurse has allowed her a few 15 minute breaks to go on short walks with us. Today was so nice we were able to take her outside a few times. She was pretty pitiful this morning…very weak, but comfortable. She seems to have gained enough strength today for a few crying episodes. Her bowels are working, just very slowly. She is making enough wet diapers to avoid an IV….barely. Hoping her distention will go down enough for milk tomorrow. The surgeon said her body is just having a hard time starting back up after such a change. Fever is being controlled. No major concerns at this time, just very slow moving.
I’m going to try to come home tonight. This will be the first night I’ve ever spent away from her, but I think it’s a good choice to get out and get a good nights sleep before starting the week alone without Peter. So – pray for me!! I’m sure Haddie and Daddy will be fine

5/24
G-Tube & Nissen surgery. (There is a little explanation in this post.)

5/25 
Last night:  She acts comfortable and is showing signs of tolerating her feeds, but she looks distended and is very gassy. She has developed a fever. Her IV is also very fragile and she is an extremely difficult stick. But so far it is still pushing fluids, so that is good. Overall, she had been doing great, until the fever.  No need to assume the worst just yet. Could be no big deal.

Middle of night:  Doc was here. General side effect of anesthesia. No immediate cause for concern.  I’ve tried to type updates several times, but they keep getting lost in cyberspace.  Haddie is doing well overall, but pretty uncomfortable right now. She has done well with small amounts of breastmilk until this morning  She is distended and gassy. No retching at this point.  Some fever, no real concern.  Had an issue with getting the tylenol in her effectively, but we’ve found a solution we think. That should help with the general discomfort and fever.  Thanks for praying!!!

5/26
AM
Haddie is still uncomfortable, but at this point, nothing out of the ordinary.  She did poop. Yay!!  Her fever is back, so more meds on the way. Still not a huge concern. Her G-tube is a little snug. We may have to change it out before we leave. She may have an ear infection  Everything else looks great. Holding feeds now so she can rest her tummy.
Oh and praise- we got a room and Grammy came and helped last night .

Afternoon:
No ear infection. .
Painful IV coming out soon. .
Feeding to resume soon .
Fever meds to come soon .
Waiting on “the orders”

Evening
Not tolerating feeds.  Back a step in feeding plan. Fever not controlled with meds.

5/27
She slept thru the night!  And because we had an amazing nurse, I slept a total of 7.5 hours with only one major interruption. Miraculous!!!  Fever goes down during day and reappears at night. Not always completely managed by meds, but never past 101.8  Still don’t know exact cause of fever. Still not an ear infection. Not a major cause for concern. Just watching.

Feeding plan scrapped and we are starting over. Priority is getting enough to maintain fluid requirements.  That is done simultaneously if she has iv, but her iv was bad and they took it out. Another iv is not an option at this point b/c it took 4 people almost an hour to stick her with ultrasound once she was already asleep pre-op   So, we are doing pedialyte via tube and slowly gonna figure it out from here. Her tummy is  much more distended than they normally see post-op, but they think she’s okay. It will just take time. They did an x-ray to be sure nothing else was wrong. The button does appear to be too small, but they can’t fix that without more surgery. They acted as if that wouldn’t be done until a month from now.

One issue is that her only oral activity is breastfeeding, but breastfeeding isn’t safe at this point. (Didn’t know this part ahead of time.) They still want me to bring her to breast for comfort and to stay oral. I can only do that right after pumping. That is pretty hard to accomplish alone.  Not to mention she just doesn’t understand why she starts and when milk starts to flow, I have to take her off. But she also doesn’t understand why she wants to nurse and I won’t let her. Please pray she be well enough to nurse soon so that way she can stay oral and comforted. 
Peter is coming today and that will help.  Right now she is sleeping peacefully. But she always is fine with an empty tummy – except she needs food.  Ahhh-the major mystery of her life . Other than that Haddie Joy has major trust issues with EVERYONE here, and who could blame her? Some staff get it. Some still don’t understand why she cries when she sees them.  I want to say, “Here’s your sign,” but I guess that’s not very Christlike.

Signing off for now.

It looks pretty cloudy really.

I think I just forgot what a KY spring night could do to for a country girls anxious heart.  Little compares to looking out over the silhouette of farmland I grew up on.  Here, in a glance, as the cricket’s chorus falls into a harmony with the other peculiar night melodies, I can almost touch years and years of memories. Laughter, sweat, friendships, family…tears.  I miss my dad.  But what a sweet feeling to scan the landmark of my childhood  and remember what we shared, what he taught; all right here from my backyard.  As I breathe in the past, my heart is exuberant with praise.  What a God we serve.

My dad was a hero to just about every little boy his life graced.  I don’t think I knew that until he passed.  It was very humbling to realize such a thing.  There were people whose lives he touched that I would have never even guessed he had spoken to.  We joked that he was like Lassie…going around impacting lives while we thought he was just working on the farm.

But really, even then, it wasn’t just about driving a tractor, it was about loving farming.  I wasn’t taught to just rake hay.  I was taught to turn that 1520 around just right and double back to create a peak of rolled hay that would make him proud.  How satisfying for us both.  As sorry as I felt for myself for having to work instead of spending my summer vacation at the lake – I’m glad I had no choice.  I have wonderful memories of working with him (and getting fired a time or two ;-0) which no one can take away.

I love the land.  He taught me how. He wasn’t just my dad, he was my coach.  He inspired me to always be reaching for more.

When we were last in the hospital with Haddie Joy, I called him to give an update.  I went through the latest news.

He then asked how I was.  I paused.

“It’s hard.  It’s just so hard,” was my reply.

But he was right there, ever so gently cheering me on,

“Well, you might not want to hear this, but you know what I always say.”

My meager, “What?”

This cue would begin his coaching.  In his most tender way, known by very few, he repeated words I’ve heard since I was a toddler banging up my knees,

“Be tough.”

Where no one else could reach, he entered.

Tears flooded my eyes.

I nodded.  Oh daddy, that is exactly what I wanted to hear.

I felt I could fight a little longer.

The time is upon us again.  Tuesday morning, bright and early, we are to be at Vanderbilt Children’s Hospital for Haddie Joy’s second surgery.  It’s not a “big deal” surgery, or so they say   From momma’s perspective, it’s ALL a big deal!!  It’s been a really long journey deciding if this is what is right for her.  But truly, I’m not sure there is a wrong decision.  She is God’s before she is ours (thanks Anette!), and there is not much I can do to mess His plans up – except maybe, not joining them and missing out on what He wants to teach me through it all.

She will have a G-tube/ Nissen.  The G-tube is a different feeding tube access and should be a bit easier to manage.  The Nissen fundoplication is a fancy little surgery done to help prevent the ill effects of GERD/ super bad reflux.  Other than one cold, and worsening reflux the last few weeks, Haddie Joy has been getting progressively better.  She has started therapy with wonderful ladies and has really enjoyed it. We have found a way for her to tolerate her feedings much better.  This has been the greatest success so far.  For her to be able to take a feeding without a sweating screaming fit afterwards makes life much more pleasant for everyone.  Not to mention, it was extremely difficult to see her in that much pain so often.  This is the main concern post-op.  How will she do with feedings after we’ve messed around with her tummy?  We pray that she will be as comfortable as possible.  The better she tolerates her feeds, the sooner we get to come home.  There is also a possibility that she will have something called retching syndrome.  Which means just what you think, she will retch and retch and not be able to get sick.  In almost every case it gets better with time, although it could take several months.

Honestly, we have absolutely no desire to take Haddie Joy back next week.  She has been such a joy.  We feel so blessed to have been able to enjoy her progressing health.  To put her through anything remotely uncomfortable again is something Peter and I are really struggling with.  Haddie Joy is a fighter, that is for sure.  She is so strong.  And she likes to show the nurses how much.  She WILL fight each and everyone she meets at the hospital, I will guarantee that.  She does not tolerate any of it without letting them know how she feels….really loudly and for long periods of time.   That’s my girl!  But it does make for an unpleasant hospital visit.

Specific prayer requests for this week:

1.) Pray for the surgery and anesthesia to be successful and for her recovery.

2.) The boys fly in for the summer Tuesday also.  Please pray for them as they basically are stepping into a very trying time.

3.) I will be flying solo on this stay while Peter has a mini vacation with older kids.  Pray that I won’t go nuts and that they will have a great time together.

4.)  Pray for Shaylea.  She has been through a lot.  She is such a blessing and has been so sacrificial and loving.  Pray she will continue to fight the good fight.

5.)  Praise God that He is able to handle all of this and for all of the amazing people who have stepped into our lives and ministered to us these past months.  God is SOOOO good!!  (Those of you who have chosen to remain anonymous – THANK YOU so much.  I want to know who you are so I can properly thank you, but if not, I hope somehow this will get to you!)

6.)  Praise God that our insurance has been amazing thus far!  We anticipated a much more devastating situation.  Although we understand we will continue to get medical bills, God has really provided in amazing ways!

We do have so much to be thankful for as we learn to navigate life with a special needs baby.  Life is and never will be the same.  There have been ups and downs.  We’ve been high and low.  Some of you have mentioned how strong I am and how if  you were me you would have lost your mind.  FYI – I did, a couple of times actually   Thankfully I’ve had great people around me who love me anyways and remind me God does too.  But, I’d be lying if I told you I had this all figured out.  And though there are more and more moments and days that I truly am learning to enjoy the trials we continue to face – it’s hard. It is just so hard.

And it looks pretty cloudy really.

But you know, I had a coach once who inspired me to always be reaching for more.

And so, I do.  I reach towards heaven, eagerly awaiting the day when we praise our Savior together.  Until then, I think I’ll fight a little longer.

When I fall down under the weight of anxiety and stress or get bogged down carrying the burdens of self loathing and deceit, I’ll reach towards my Savior and trust that my coach here on this earth was right.

And as I reach  for His hand I’ll remember, there truly is more to behold.

Arrangements for Vic Arnall

Visitation: 2-5 Sunday, April 3 at Maddux-Fuqua-Hinton Funeral Home.

Funeral: 10 a.m. Monday, April 4, at Edgewood Baptist Church.

Burial following at Kentucky Veterans Cemetery West at noon.