Catching Up is Hard to Do

It's True . . . Catching up IS hard to do, especially when life happens so quickly, so fast and with such intensity.  Maybe that's why Facebook is so wildly popular - you can post snip-it's of updates on your life without necessarily going into great detail.  It's easy on the author AND the reader, right?

This Blog gives us a way of fleshing out our updates, and for that I am grateful.  Even though I may not post as much as I did in the past, we still open our hearts and lives because we believe God has called us to, and to do so in this way.  We want others to see what "real life" is like for special-needs families, for Believing families, for families who've lost a child, for families who face the high possibility of losing a child . . . it's important to me and to Mike that we share and stay open, as we believe God will be glorified through our mess, in spite of our mess, BECAUSE of our mess.  So, thank you for staying with us and thank you for reading!  

Last Sunday, Conner turned 13!  Our eldest child is now a TEEN.  How is that possible?!  At the last final moment, God provided a way for Conner and I to both go to Boston for the NKH Conference and for the NKH Crusaders Fundraiser, where we raised money for the "Ellie Kate Helping Hands Fund".  This special Fund assists families within our NKH Community, and it's something so dear to our hearts.  Many of you donated auction items to this special fundraiser, and I must say, everything was a big hit there in Boston!  We raised close to $800 for this Fund in Ellie Kate's name.  Our goal has been $2,000, so we have a ways to go.  Soon, you will see more information on a Facebook auction, who's proceeds will go directly to this fund which assists NKH Families in need.  Be watching so you can take part and help us raise those final numbers!  

Conner and I had such a blast together - with the NKH families from around the world and even in hearing from the experts on this disease which affects our family.  We loved seeing the gorgeous fall colors, so vibrant and breathtaking!  Conner and I also took the Freedom Trail and visited Plimouth Plantation and the Mayflower II, among other things.  It was a trip we will both remember always and I am forever grateful for the opportunity God gave us!

Once I settled back into "mom-mode", it was clear to me that Lucy still wasn't feeling well - that her ear infections might not be cleared up (she's been through several antibiotics recently to treat them, all to no avail).  It was confirmed that Lucy's ears are still infected but before the new antibiotic could even help, I realized that she had c-diff (which is something that can happen in your gut, esp if you've received too many antibiotics).  Lucy is now being treated for c-diff, but thankfully it IS getting better and isn't nearly as messy as it was in the beginning.

This Friday, Oct 28th, the doctors will go in and take out Lucy's current tubes that have failed.  They will clean out the infection and see what's going on in those little ears.  We hope that new tubes will be placed.  If so, it will be her FOURTH set of tubes.  We will stay the night at OU on Friday since Lucy is high-risk, and since she's had such a hard time with it all lately.

Also on Friday, Henry is set to have minor oral surgery to remove several infected teeth.  This will be Henry's third go at this type of surgery, and we believe his teeth are more apt to breaking-down bc of the strep he now carries in his mouth and throat.  Henry's PANDAS has been flaring TERRIBLY. Times when we see "our Henry", have been few and far between.  We are incredibly ready for Henry to have these teeth treated and taken out, which will hopefully calm PANDAS within Henry's body and brain.

How are we going to handle two surgeries in one day?  I have no idea, but I'm not worried!  I know God has orchestrated it and HE will work it out. Please pray with us that the details and times will all fall into place, as both children MUST have these things done.  Please pray for peace and for healing for Henry and Lucy, and pray for peace for Conner as he trudges through Junior High while we deal with illness here at home.  We covet your prayers.

God has been so sweet and has truly calmed my heart in incredible ways over the last few months.  It's unspeakable, really and it's not because of anything I have done, or haven't done.  He's just brought peace to my heart - a steadiness and a hope; hope for the future - that this isn't "IT".  God has MORE for us - more than just NKH, more than just PANDAS, more than death, heartache, and all that it means to trudge through the world of special needs.  He has LIFE and LIGHT, and He WILL bring it! 

He's reminded me of these promises so sweetly by taking me back to the places in His Word where He has richly spoken to Us before . . .

Thank you, Lord for your RICH goodness and for your FAITHFUL Word!  

We are not worthy, but we are grateful.  

Isaiah 43:1-21 - ESV

But now thus says the Lord,

mhe who created you, O Jacob,

he who formed you, O Israel:

n“Fear not, for I have redeemed you;

oI have called you by name, you are mine.

2  pWhen you pass through the waters, I will be with you;

and through the rivers, they shall not overwhelm you;

pwhen you walk through fire qyou shall not be burned,

and the flame shall not consume you.

3  For rI am the Lord your God,

the Holy One of Israel, your Savior.

sI give Egypt as your ransom,

Cush and tSeba in exchange for you.

4  Because you are precious in my eyes,

and honored, and I love you,

I give men in return for you,

peoples in exchange for your life.

5  uFear not, for I am with you;

vI will bring your offspring from the east,

and from the west I will gather you.

6  I will say to the north, Give up,

and to the south, Do not withhold;

bring wmy sons from afar

and wmy daughters from the end of the earth,

7  everyone who is called by my name,

whom I created for my glory,

whom I formed and made.”

8  Bring out xthe people who are blind, yet have eyes,

who are deaf, yet have ears!

9  yAll the nations gather together,

and the peoples assemble.

Who among them can declare this,

and show us the former things?

Let them bring their witnesses to prove them right,

and let them hear and say, It is true.

10  z“You are my witnesses,” declares the Lord,

“and amy servant whom I have chosen,

that you may know and believe me

and understand that I am he.

bBefore me no god was formed,

nor shall there be any after me.

11  cI, I am the Lord,

and besides me there is no savior.

12  I declared and saved and proclaimed,

when there was no strange god among you;

and zyou are my witnesses,” declares the Lord, “and I am God.

13  Also dhenceforth I am he;

there is none who can deliver from my hand;

I work, and who can turn it back?”

14  Thus says the Lord,

your Redeemer, the Holy One of Israel:

e“For your sake I send to Babylon

and fbring them all down as fugitives,

geven the Chaldeans, in the ships in which they rejoice.

15  I am the Lord, your Holy One,

the Creator of Israel, your King.”

16  Thus says the Lord,

hwho makes a way in the sea,

a path in the mighty waters,

17  who ibrings forth chariot and horse,

army and warrior;

they lie down, they cannot rise,

jthey are extinguished, kquenched like a wick:

18  l“Remember not the former things,

nor consider the things of old.

19  mBehold, I am doing a new thing;

now it springs forth, do you not perceive it?

nI will make a way in the wilderness

oand rivers in the desert.

20  The wild beasts will honor me,

pthe jackals and the ostriches,

qfor I give water in the wilderness,

rivers in the desert,

to give drink to my chosen people,

21  the people whom I formed for myself

rthat they might declare my praise.

The Big Auction, In Honor of Ellie Kate

This very time next week, the NKH Crusaders Fundraiser will be taking place near Boston, MA.  It's all just SO exciting, ya'll!!! My Dear Friend Kristin Archibald leads the Crusaders, and once again is valiantly putting on the NKH International Medical Conference, along with the Fundraiser next Friday night.  It's during the Fundraiser that the table auction will take place for the "Ellie Kate's Helping Hands Fund", a fund Kristin helped to start in honor of Ellie Kate, and in order to tangibly support fellow NKH families around the world.  A Fund, in Our Daughter's Precious Name . . . it's beyond humbling, and knowing it allows other NKH families receive RECKLESS LOVE, the Love we learned from Ellie Kate . . . well, as Ellie Kate's mother, it just takes my breath away!


We are incredibly grateful to those sweet friends who have graciously stepped up, donating items from their personal businesses, from their own collections and are even giving away their own artwork!  All of these things will be auctioned off in Boston next Friday in hopes of raising $2,000 for the Ellie Kate Helping Hands Fund.  It's important to us that you know, none of the money raised (or from this fund in general) will be used for our family in any way.  The fund allows NKH Families to apply for assistance for anything from a medical bath-chair to assistance with medical bills.  Last year, we raised $1000 and were able to assist 10 families. This year, we hope to raise the full $2,000 and help up to 15 fellow NKH Families!  We pray this Fund continues to grow as the years go by, and hope more assistance can be offered to these families from around the world who are so near and dear to our hearts.


Other than research, the NKH Conference is the biggest thing within our tight-knit community, and everyone looks forward to it every two years.  There is something unspeakably special about being in the same room with, being in the presence of, fellow families who are walking the very same road as you.  As NKH parents, we share similar DNA and genetic mutations (sometimes identical), so we truly share so many things.  We all fight for our children.  We've all prayed for them to cry as newborns.  We've all had to learn about g-tubes and feeding pumps, seizures and wheelchairs, and so many other things no parent "plans" for when deciding to start a family.



This year, our NKH friends and family will once again gather at Boston Children's Hospital, listening to top neurologists, geneticists, therapists and more.  They will get an update on the research done by Denver Children's Hospital and the University of Colorado, as well as Notre Dame University. Research has been funded by parents, friends and family for many years now, although thankfully we have these Universities on board now too.  That being said, the Fundraiser, which takes place at the end of the medical Conference, is extremely important to everyone within our Community.  Please pray along with us that the Fundraiser will go well and that Ellie's auction table will raise a ton of money for this worthy cause!  

There are still ways YOU can participate with Ellie Kate's Helping Hands Fund . . . 

Next week, we plan to do a Facebook auction.  

This will include local items from places such as area boutiques, hair salons, 

and any type of specialty shop.  

• We would LOVE to include artwork and photography sessions, so if you know a photographer who would donate a session for this event, or an artist willing to give some of their art, please let us know.  
• Local items from local shops are still needed as well, so if you own a business or have items you would like to donate, consider joining our efforts!
• The deadline for all FB auction items in next Thursday, October 13th.  
• If you have an item you'd like included in the Boston table auction next week, please contact me for the mailing address and additional information.
• For more information, concerns and details, feel free to contact me at anytime.  We are eager to get more items on board as soon as possible so that the Fund can be successful!  Please contact me by Facebook or by email - tullyryan@hotmail.com.  

Mike and I planned to attend the Conference this year and hoped to proudly stand at the auction table for the Ellie Kate Helping Hands Fund, which displays Ellie's picture and story (I can't tell you the thrill of standing behind that table and telling Ellie's story to others!).  Unfortunately, we aren't able to make it to the Conference after all, as some important financial issues have come up.  We are so sad that we aren't able to be there for the auction table, and more importantly, we are sad to miss seeing our friends and hearing the research updates first-hand, straight from the specialists.  Selfishly, Mike and I were hoping to get away as a couple for a few days, and we absolutely love Boston with it's rich history and it's beauty in the fall season.  However, we are choosing to trust the Lord with this and know that HE is in control.  It's strange - I can truly say those things with all sincerity as He has given me peace with the situation and we know He is beyond WORTHY of our trust!  Like I said, some important issues have come up and they truly are worth of the sacrifice (we hope to fill you in as God leads).  For those of you who've physically given me your auction donations, I will now be mailing the items instead taking them on my person to Boston (no worries, no big deal; everything will get there safe and sound!).  

Oh, Friends!  Thank you for supporting us in this way, for helping us keep Ellie Kate's Legacy alive and for allowing her name to be used even today, almost four years after her death.  We appreciate your prayers, support and encouragement more than you could ever possibly know or understand this side of Heaven!  I can't wait to post in the next few weeks, giving you fantastic updates on how much has been raised for such an important and precious cause! 

With Hope,

Ryan

. . . and then she was FIVE

Lucy turned FIVE today.  I don't really know how that's possible and I wasn't really prepared for the flood of mixed emotions that hit my heart today, as precious memories of both Girls came to mind.  FIVE - it's a huge milestone for Lucy, and I remember well celebrating Ellie Kate's fifth birthday . . . wasn't that just a couple of years ago?  How is it that time crawls by and goes at lightening speed, all at the same time?!

Ellie Kate, 2005

Lucy Belle, 2011

It hit me today - Ellie Kate was five when Lucy was born.  That seems unreal to me!  Once Ellie turned five years old, we barely had two additional years with her.  Lucy is now only two years away from the age Ellie Kate was when she left this earth and ran into the arms of Jesus.  It's sobering and confusing and gut-wrenching; it's a roller-coaster of emotion in every possible way, bringing up fears and questions and doubts.  

Ellie Kate, age 4

Lucy Belle, age 4

Ellie Kate, 2006

Lucy Belle, 2011

It's a step of faith - loving someone in a fragile state because there is so much at stake.  There is so much on the line for oneself, for one's well-being, but true love doesn't think of oneself, does it?   True love puts another person above your own desires and feelings, in every possible way, and Jesus is the perfect example of that. God the Father knew, when He sent Jesus to earth, that His only Son would one day die a terrible, painful, earthly death.  He knew it and He continued to love Him like only a perfect Father can, providing His every need and being there at all times.  As Believers, we die to ourselves and as parents, we love recklessly with every fiber of our beings, no matter the consequence, no matter how much it may hurt.  And that is how we will continue to love Lucy, just as we loved her Big Sister.

Ellie Kate, age Five

Lucy Belle, age Five

Our Sweet, "Beautiful Light".  Our unexpected Baby, our Lucy Belle McLaughlin.  She has brought so much joy, so much hope, so much laughter.  God has given us the gift of  enjoying life through death, because of Lucy.  His ways are ALWAYS higher.  His plans are ALWAYS better than what we could ever hope or dream-up on our own!  I'm so grateful that the Lord created Lucy and gave her to us at the absolute perfect time for Ellie Kate, for me, for Mike, for Conner, and for Henry.  God gives GOOD and perfect gifts, and that is exactly what we have in Miss Lucy.

Oh, Father! Thank you for the precious, priceless gift of our Lucy.  I can never express my gratefulness for her Little Life!  Thank you for giving Lucy to us at the perfect time and thank you for granting us dreams better than we could ever hope for!  Thank you for healing my heart through Lucy Belle.  Thank you for the precious gift of Ellie Kate and Lucy being so close in appearance and mannerisms and for daily reminding us of how richly you truly have blessed us.  May we never forget your goodness, your kindness and your faithfulness to our Family.  We are so unworthy, Father.  We give you Lucy and ask that you continue to orchestrate her life according to your plans.  

Lucy, 2 Months

Lucy, One Year

Lucy, Two Years

Lucy, Three Years

Lucy, Four Years 

Lucy, Five Years

The Learning Curve - It's All About Grace

The past few months, I've been on a personal learning curve.  This Learning Curve has played-out in every aspect of my own life as we've been surrounded by change.  Many things are reminders of what I've learned in the past three years since Ellie Kate passed away, but many things are NEW.  All experiences and epiphanies make us grow and help us change into better human beings, better Believers, better parents . . .  BETTER. 

Here are some ways God has been teaching me and how

He's been stretching me to trust Him more:

• It's okay to still mourn my Daughter, Ellie Kate.  It hasn't been too long - it will NEVER be "too long".  It's also okay for some days, to feel the same initial pain as I did in the beginning. It's OKAY. 
• It's okay for me to take time for myself and to do the things I enjoy - walking in nature, exercising, random little day-trips with my family.  These are GOOD things to do and it's okay to drop things and take care of myself and my family in this way. 
• It's okay to let other's down (this is a HUGE one for me).  I can't always make everyone happy all-the-time.  Whether it's forgetting play dates or missing a thank you note/email, I must give myself freedom NOT to be perfect.  I can trust that the LORD meets all of the needs of my Friends. 
• It's okay to still mourn the "normal"- tight friendships we once had or dreams God still has placed deep within our hearts.  What HE wants is for us to stick close to HIM. 
• It's okay for me to think of Ellie Kate every time I see Lucy.  God has allowed it to be that way, and I will choose to rest in that sweetness, even though it sometimes stings my heart. 
• The Father has "fearfully and wonderfully made" ALL of our children, and HE alone knows the ins and outs of their minds, bodies and spirits.  We will cling to this Truth, knowing that somehow, someway, God will use all of these things for the good of our children AND for our good as the Parents!  Most importantly, God will use all of these things to show His Glory!
• It's okay for me to still wonder how we will pay for things; you know, to DOUBT - how we will cover medical bills that have come up this year for ALL of us, etc?  God has reminded me that He owns the cattle on a thousand hills, and He will surely take care of me!  He takes care of the mere sparrow, providing every need; He will surely take care of everyone of OUR needs! Read about it here: My Provider (Psalm 50:10); Do Not Worry (Luke 22:24-32)
• I'm learning to accept - the Special-Needs life often means, what might be normal and expected in the Typical World, isn't what's expected in the world of special-needs.  This is truly hard to accept; it's hard for me to trust God to show the people around me how to love me and my family.  I'm not the ONLY mouthpiece, that's for sure. 
• God has reminded me (and Henry) of Shadrach, Meshach and Abednego - We KNOW how these men were obeying God and yet still were literally and physically thrown into the fire.  But, God rescued them and not only that - He was in the fire with them!  Just like these men, God is with OUR little family in the fire.  Even if God doesn't take it away; even though He has NOT yet taken it away, we will still choose to put our trust in him.  (Read the story here: Daniel 3)

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There's something else I ran across this week - something from a very cool blog.  It truly represents a picture of the special-needs life - the isolating, spinning, overwhelming, constant, permanent, blissful, joyful, rollercoaster of it all.  Parts of this article rang SO true with my own heart, that I found myself in tears reading it - sometimes ugly tears, as the truths are so real. 

Please read the blogpost: Loving a Child Who Cannot Speak 

"There are people in your life who are going through this never ending grief. And they have learned how to blend in. They know how to disappear when they can't blend in and after a few times you stop noticing their absence. But they don't. They wear the guilt of escaping on their shoulders. The isolation adds to their pain. But they simply cannot take one more raised eyebrow from a stranger. Every day they are at the brink of breaking. So give them grace". 

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Oh, Father!  Thank you for your continued grace and forgiveness!  May I learn to show this same type of love to those around me, even when it's hard, even when I feel wronged.  Remind me of your continued faithfulness and provision.  Remind me of the many times you have Divinely Intervened. Turn my mourning into DANCING, even now!  Allow me to truly accept myself where you have me; I give you my needs, desires and mourning.  Continue to bring hope, joy and peace to our family, for our good and for YOUR glory.

Ryan