Running from God

 Recently, I’ve had a deep desire to run from God and from everything that’s been my foundation all my life.  I’ve been angry.  I’ve been hurt.  I’ve been confused.  I did not feel these things when Ellie Kate died.  I had complete peace then, even though there was much heartache (which continues in waves to this day).  These recent feelings . . . are different.

 

It’s just that it never seems to stop for us.  NEVER.  Even yesterday, Mike lost a tire and ended up having to get four new tires (thank the Lord he was kept safe); add that to the recent termite findings, the broken microwave, the house flood and needed remodel, the bloodwork and treatment up in the air for Henry, and then many hospitalizations for Lucy – WHEW, I can’t even list it all.  Literally, it’s one thing on top of another, repeatedly – for years and years and years, and I don’t understand it.  I know we are not alone.

 

I’ve wanted to run from God in the last several days.  I tried to block Him out.  I didn’t want anything to do with this Creator of the Universe who was allowing so much turmoil, heartache, and struggle to our family.  It makes me hurt for my children and for my husband, more than anything. I don’t understand, if we’ve surrendered our lives, our marriage, our children to the Lord, WHY there is constant turmoil.  Then, it hit me . . .

In His patience and kindness, God has reminded me of some important things on this, the week of our 22^nd Wedding Anniversary:

1.     I am unable to separate myself from my God.  I made a covenant with Him, and He with me.  I am tethered to Jesus – not to a religion, denomination, people group, or political affiliation.  I am forever woven in with Christ.  This was a sweet reminder that I am not alone, that all those other things don’t matter – only my personal relationship with Him. 

2.     When we married, we dedicated our lives, our future, and any ministry God would give us, over to Him.  Why should I be surprised at the “fiery darts” we face as a family, and as individuals, when we’ve given it all to Him? On the contrary, we should expect these trials when we’ve surrendered it all to Him.  If you haven’t experienced trials, if you aren’t experiencing messy-ness as a Believer, then something is wrong.  It may not be seemingly constant, like ours, but it will be on a regular basis.  God allows that so we will draw near to Him and realize we need HIM alone. 

3.     God meets me where I am; the same is true for you!  When you feel lost, confused, broken, hurt, disillusioned . . . God is okay with that!  He welcomes it!  He longs for you to come to Him in any way, shape, or form.  He just loves you and wants communion with you.  He will NEVER turn you away, no matter what you are feeling or thinking!

4.     I still don’t fully understand. It’s true – I don’t understand all this mess we’ve walked through and all we’ve walked through the last seven weeks.  It doesn’t make sense and it does make me hurt for my husband and children.  The thing is – it is OKAY for me to not understand!  There is freedom in that, for you and for me.  Isn’t that amazing?!?  He meets us where we are.  He loves us where we are.  He works in and through us where we are. 

Jesus promises to never leave us or forsake us, and I can choose to cling to that, even if I’m barely holding on. God knows.  He understands.  He still has good things for me.  As someone tethered to Him, He will still do good works through me, for HIS glory!

5.     To be clear, I don’t pretend to have experienced persecution.  Lord knows American Christians do not face the kinds of persecution other Believers do all around the world. Trials can (and will) be different than persecution. 

 

As for updates, on Thursday we will get the results from some important bloodwork for Henry.  These results will give us direction as to what comes next.  He continues to struggle with flares – we aren’t sure if it’s due to the mold found in our house (thankfully now cut out), or if it’s caused by the upheaval from all that’s going on in the house. 

 

Henry’s counselor, who has been with him for many months and has made great headway with him, has stepped aside this week, encouraging us to find a new person to take his place.  You can imagine, this is frustrating and devastating to an extent.  We need to know what steps to take next.  We need things to fall into place for our son.  Our family covets your prayers for clear answers and a direction/plan forward.

 

We hope to move into an Air B and B by next Monday, at the latest.  So, we will be packing up valuables and our kitchen items/pantry.  Thankfully, we do not have to move furniture – they will move that for us.  We may be out of our home for a couple of weeks, which isn’t ideal since school begins August 8^th.  It’s been seven weeks tomorrow since the “flood” – much too long – and we are ready to get new floors, cabinets, and a few walls.  We are grateful to have a trustworthy contract company!  Thank you for praying for a smooth transition for Lucy, our nurses, and our kiddos during this time. 

 

My hope and prayer is that this post meets you where you are and encourages your heart, mind and spirit.  There is so much good yet to come.

 

With Hope,

Ryan

Happily Ever After . . .

Fourteen years ago tonight, we never dreamed of being where we are today❤️.

Our Wedding Day - 8/2/2002

On this day, I've literally driven all around town from appointment to appointment, visited pharmacies and several grocery stores. I've been on the phone with doctors and nurses and purchased diapers and pj's for our almost 5yo little angel. Instead of a big celebration or romantic getaway, we are saving to hopefully make an NKH conference and PANDAS conference this fall. We're spending the evening as a little family, eating take-out, and it's wonderful❤️. Our anniversary has been a typical day in the life of a special-needs family and one I will treasure in my heart.

A Few Months Before Our Wedding

Fourteen years ago, we never thought we'd have an 8yo who feels his job is "seizure watch" for his sister, while his 12yo older brother takes pride in pushing his sister around everywhere we go, despite the stares.

Our boys know how to tube feed and have spent enough time in the hospital that they know to ask for "a big room", and they know which foods to eat in the cafeteria. They carry so much on their shoulders, but their shoulders are broad - just like their Daddy💙.

Dating - 2001

We never would have guessed that we would be thrown into the world of special needs or that God would give us a family mission through two beautiful daughters that He would entrust to us for but a short time on earth💖. We had no idea how much we would learn medically, relationally and spiritually through these Two Loves. Our Girls have made THE lasting mark on our Family - Reckless Love to ALL💚.

God has continued to provide spiritually, financially, emotionally, and in every other possible way. He has taught us just HOW FAITHFUL He truly is! What an honor it is to be a family that gets to show God's faithfulness, goodness and glory💜!  Thank you, Father.  

Even though this life isn't anything like we planned - it is a GOOD life.

How could we ever ask for more?

Michael McLaughlin, I adore you. Thank you for choosing me that day fourteen years ago and for choosing me every day since.

💞

.You continually amaze me with your faithfulness, kindness and laughter and I wouldn't want to walk this journey with anyone but you! I am yours in sickness and in health, for ETERNITY!!

Mike's Anniversary Card for me - waiting patiently on the fridge

You continually amaze me with your faithfulness, kindness and laughter and I wouldn't want to walk this journey with anyone but you! I am yours in sickness and in health, for ETERNITY!!

💖💖💖😍😍😍😘😘😘💘💘

Overflowing

It's been a while since I've written, and that's odd for me - especially during such a special, awkward and sacred time in our lives.  Writing here is such therapy for me - it helps me process my thoughts.  Even if it isn't read, I am thankful that I can put my words out there.

As you may know, our family has escaped to my favorite place in the world.  Only some of you know where that is, but I can tell you that a beach is involved.  Unfortunately, where we are staying doesn't have wifi (ugh!).  Nonetheless, I instantly, I felt peace upon arriving.  Peace with nature, peace with myself, peace from my Sweet Father-God.  Peace comes in His incredible creation.  So here we are, hiding out for these difficult days, as a family, while getting to see extended family and friends in the area.  It's been precious so far, even though my emotions have been up and down.

Here's a taste of where we are . . . 

I'm of course reliving those last precious days with Ellie Kate while we are here.  Some of the memories are very, very painful.  When you watch your loved one suffer so terribly, it really does cut you to your core.  How I wish I could have taken that earthly pain away from her!

Thursday, December 19th:  We brought Ellie home from the hospital on hospice.  The night before, Mike had stayed the night in the hospital so that I could get ready for Ellie coming home.  I walked in her room on December 19th and was struck with how she looked.  She had truly taken a turn for the worse.  Every time I tried to feed her, she would scream in pain.  She was already starting to bruise all over her body.  At that moment, I knew that we had made the right decision as her body truly was breaking down.

That evening was a hard one.  We had planned some fun and special things, but Ellie was already in rough shape.  I realized the plans I had made were just that - MY plans, and not what was best for my Daughter.  So, we played it by ear.  And we loved on Ellie as much as we could.

Friday, December 20th:  On this day, Ellie still had a bit of energy.  She tried to engage with us a few times.  She touched the Christmas tree. And, by God's goodness, our friend and photographer, Holly Hall, was able to come to take hospice photos. Ellie was going downhill so fast, and our minds were trying to wrap around that.  We obviously had never done hospice pictures before, and neither had Holly; but God was with us all, and He inspired this artist.  The result was precious pictures, some of which we've never posted.   We invited her therapists and teachers over to stay goodbye that evening.  She had a burst of energy that night, and I'm so thankful that we were able to watch her "hop" her friends out the door, like she loved to do with any visitors.  It was precious.  I will warn you now: For those that know EK, the following pics may be hard to see, as she is so unlike herself . . .

Saturday, December 21st: This day, Ellie was going in and out of consciousness.  I held her most of the day, except for the times of vomiting I had brought on by my nerves.  My friend Jenni Khufal came to visit, even though she was suffering (and still is) from a rare and serious form of cancer.  We received gifts from Miranda Lambert, Taylor Swift and Carrie Underwood - Ellie's favorites.  I like to think that she could still here us some, as well as the music we played her, and the prayers we said over her.

By that evening, one year ago tonight, we knew the end was near.  Nurse Mindy stayed with Mike and I.  We put her in bed with us, loving on her through the night.  It was the most precious night of my life.  See, Ellie never like to snuggle with me.  I think it was because we never physically bonded when she was an infant.  After all, she was on the ventilator for almost two months, then was in and out the hospital for most of that first year.  But that night, we snuggled like never before.

I will save the rest for later this weekend.  We so covet your prayers and blessings for us during this time.  As the end of our "Firsts" without Ellie Kate is drawing near, I find myself full of so many emotions, which I'm sure is normal.  I'm just glad to be in a peaceful place with my family, away from the normal and day-to-day, away from our home and those last hard memories.  I am SO GRATEFUL, friends.  God is infinitely good, and I'm only beginning to see the outskirts of His kindness.

Also, remember that the Month of Reckless Love in Honor of Ellie Kate is still going strong!  You still have time to jump in and participate with active, purposeful acts of kindness and love to those around you.  Here are a few ways you can still participate . . .

December 23rd: Ellie's Heaven Day! Post pictures of you and your family releasing PINK balloons in Ellie Kate's honor. Send messages with your balloons and be creative! This is a way to show our family that you remember our Sweet Girl.


FOR WAYS TO GIVE while receiving a tax write-off: 

*Give to the "Ellie Kate Project" through Helping Hands Ministries - This is the family medical fund, and giving goes directly to Lucy Belle's medical costs.  Although we do have good insurance coverage, many of the NKH meds and treatments are not FDA approved, and thus are not covered.  With Helping Hands, we turn in our receipts and they can pay they directly.  It's great accountability, which we are grateful for.  

*Give to NKH Crusaders and help us find a cure for this terrible disease which causes GI issues, epilepsy, extreme developmental delays, mental retardation, and more. 

*Give to OKC Hope Link OKC Hope Link- - a ministry we help lead; Hope Link reaches families of children with rare, serious and undiagnosed disorders.

Overflowing With His Love,
Ryan