I Believe; Help My Unbelief

My mind, my heart and my flesh have been so deep in sorrow lately.  The first four months after Ellie Kate died were terribly hard, just barely surviving.  Then it got a little better, a little easier.  It feels like the nine-month-mark hit hard again, and I started to feel like I was drowning in sorrow.  And tomorrow - tomorrow is the ten-month-anniversary of Ellie's death; and I find myself struggling to breathe.  

I'm desperate for peace and hope - those things I have felt before in this journey.  What did I do to negate these things?  How have I let fear and distress creep in?  What do I even know to be true? It's me being brutally honest here, Folks.  I think if we are honest, we have ALL felt this way at one time or another (but then again, maybe it's just me).  

So tonight, as I sat here wallowing in my sorrow and pain, I came across this verse: 

Joshua 1:9, " Have I not commanded you? Be strong and courageous. Do not be frightened, and do not be dismayed, for the Lord your God is with you wherever you go.” ESV

And just like that, after feeling all alone, I am reminded that I am NEVER alone in anything.  Jesus is with me wherever I go - He's with me everywhere I go physically, mentally, emotionally, spiritually, etc.  He is with me now in the darkest of places as I relive Ellie's last moments, and as I dread watching Lucy's someday.  He is with me and I am not alone.  So much peace comes from knowing that we aren't alone!


HE is My Hope.  HE is MY Comforter.  Oh, My Soul - find your hope in Him!  Find your peace in Him!  Find your joy in HIM!  It's the only place to run, the only place to find comfort; of this I am surely convinced.  I choose to see You in my life.  I choose to trust You, Lord.  I choose to believe.  I believe; help my unbelief. 

-Ryan

On a Lighter Note, and to add a little smile to your day, here's a photo of Lucy Belle in the new wheelchair we ordered her on Monday.  Of course, Lucy's will come in pink (She wasn't as impressed with it as we were)! 

Top Ten Ways to Love the Broken in Body and Spirit

It's no secret that Mike and I have a heart for social justice.  Our hearts bleed for orphans, for those caught in poverty, for those stuck in slavery and trafficking, for those who have been abused, for people who are hurting.  

Those who know me know that I am a big "Mercy" person, and I am sympathetic to a fault.  It's hard for me not to champion all of these worthy causes here on my blog or in our Carepage, and at times you will find me mention many of them.  However, this week I was reminded that while God has given me a heart for ALL of these things, He has given me a mission for ONE of them specifically.  That one thing is the World of Special Needs - the families, the children, the hearts and lives affected by those with serious, rare and undiagnosed disorders.  This also includes those who have children who have died.  If my heart bleeds for the other things I mentioned, it truly hemorrhages for the dear ones who face the life of loss and of special-needs.  

Maybe it's because He's called our family to live in this world.  After all, He has called us (or thrown us into) this very special world.  I am honored to be a part of both of these precious groups, although I readily admit to being overwhelmed by it all.  Although it isn't something I would choose, I am grateful for it.  You see, these are tight-knit groups full of loyalty and fierce friendship.  No one knows what we go through like those who are living it day in and day out, just like us.  We are a family.  A fraternity.  A sorority that no one would every dream of being part of.  Yet, here we are, arm in arm. 

On Thursday I was able to attend a dance recital for girls at The Children's Center here in Oklahoma City.  The Children's Center is an amazing place - a place for children with extreme medical complications to live.  Children can't live in hospitals, but when it isn't medically feasible to live at home, these little ones go to live at The Children's Center.  We have several friends who work at this incredible place and a few who live there as well.  

Lucy and I watched attentively, dancing along with the girls in their costumes, watching the them in their wheelchairs move and smile and beam with excitement.  I watched the parents beaming with pride, watching a dream unfold before their eyes - THEIR little girls were in a dance recital!  No trach, no feeding tube, no oxygen, nor wheelchair could take this away!  And my tears flowed.  

Here's a few pictures of Lucy, our friend Kelsey (who currently lives at TCC) and Ashley, our dear friend who teaches at there . . . 

So, here's the deal.  I've been impressed to encourage you and challenge you in the following ways.  Please know that my heart is one of mercy and love, and in no way am I adding guilt to your spirit.  I'm simply being obedient in reminding you of ways to pray, of ways to thank the Father, of ways to challenge you in loving well.  These are the People I am called to love, and I'm going to tell you how to love them . . . 


1.  When you feel like you are going crazy from the days' events with your children, thank the Lord that you have them living in your home.  

• Pray for the parents whose children cannot live at home, or spend extensive time in the hospital, because of severe medical issues.  
• Go visit the child who lives at TCC or the child who is in the hospital.

2.  When you roll your eyes at having to read that extra book at bedtime, thank the Father for the opportunity to have children who understand your words and who can literally see the pages of the book.  

• Pray for the parents who long to tuck their children in at night in their own homes 
• Pray for healing for those children who cannot see, cannot hear and cannot sleep in their home.

3.  When you get frustrated over making a meal for your family, thank the Lord for the money to buy your groceries (many families of special-needs children have a hard time doing this).  

• Thank the Lord that your children have the ability to eat by mouth.  
• Find a family who you can bless with a meal or with groceries.

4.  When you fret over your child's broken bone, bloody nose, scrape, or colic, thank the Father that the hurt is minor and temporary. 

•  Pray for the family whose children deal with chronic issues - those on feeding pumps, those in wheelchairs, those with trachs, those on chemo, those who have seizures, etc. 
•  Find a family you can bring a care-basket to - one full of kleenex, journals and treats that they can keep in the hospital or even at home.  
• Get them gift cards to Walgreens and CVS that they can use on prescriptions, over-the-counter meds, medical gloves, large diapers, etc. 

5.  When you sit down to plan your child's over-the-top birthday party (the one you hope to outdo all the other parents with), think about the family who no longer celebrates the birthday of their child with a party because they are no longer here.

• Pray for that family who has lost a child.  
• Send them a card or a small gift on their child's birthday, letting them know that their child isn't forgotten.  

6.  When your child is hitting their milestones and is off-the-charts in their growth, be careful before you brag about it in front of your friend who has lost a child, or whose child will never meet their milestones.  

• Pray for that family to accept diagnosis and to find encouragement in the small accomplishments.  
• Ask them questions about their child's development and praise even the smallest accomplishments whenever you see that sweet child.  

7.  When you dress your child in that fancy dress, get their hair done, dress them in the best shoes, remember your friend who is trying their best to dress their special-needs child the same way. That's right - we want our kids to look cute too! 

• Pray for the family to feel accepted.  
• Praise the child on how pretty/handsome they look.  Compliment their hair, their shoes, their clothes, just like you would a typical child.
• If you are financially blessed, give the family a gift card so that they can purchase clothes for their extra special little one. 

8.  When you make out your child's birthday invite list, or when you put that play group together, be sure to invite your friend with a special needs child.  Don't assume that they won't want to go, or can't go.  

• Pray for that family to feel included in the community. 
•  Make sure they feel part of the group by including them, even if they say "no".  

9.  When your typical (the word for 'normal' in the special-needs world) child asks questions about a special-needs little one, or about a child who has died, be honest and answer their questions.  

• Explain to them that God chose to take that little one home to heaven to no longer suffer.  
• Teach them that God allows sickness and heartache, but He also brings comfort and peace.  
• Give your children ideas of ways to practically love those in the special-needs community.  

10. Whenever you get the chance, love the people who have lost children and those within the special needs community with a reckless love, and teach your children to do the same. 

• Give financially when you are able (MOST of these families struggle with funeral costs - upwards of $10,000; most struggle with medical bills, equipment, meds, etc).
• Call, text and send cards
• Acknowledge their struggle and don't be afraid to ask questions
• Make meals or give gift cards (it's hard for families to even remember to make meals sometimes, much less have the funds or the energy to do it!)
• Hug the special-needs child.  Talk to them.  Praise them, just like you would a typical child.  Praise the parent and hug on them too (most of the time parents and children are stared at or ignored in public)!
• Do what you can to show the family and child that they are an important and valid part of your life, of your family and of the community.

I sure hope these things are helpful, Dear Ones.  Before we were in this "special world", I too needed someone to tell me these specific things.  May there be no shame, no guilt - only encouragement in ways to love better.  

Be Blessed and Love Recklessly - 

Ryan

Double Digits

Today is my Sweet Conner's tenth birthday.  He has hit the double digits!  It hardly seems possible, people.  TEN YEARS?!  Oh-my-goodness!  I've been a mommy for ten years!

This precious boy has brought me so much joy.  His tender heart is so dear to me, and he inspires me with his blind faith; faith like a child.  Conner made me a momma.  His name means "Leader" and his middle name (Michael) means, "Who Is Like God".  Conner certainly fits the meaning of his name and I cannot wait to see what the Lord has for this boy!  I couldn't ask for a more precious child.

We had fun celebrating Conner today and he had little surprises all day long.  Henry was excited to celebrate his brother, although it's still tough for him to understand that Conner's birthday is today and yet his party is on Saturday.  I guess some day Henry will wrap his little mind around that concept:).  Henry even picked out a balloon for Conner, which is saying a lot seeing that Henry's absolute favorite things are balloons!

The hard part of the day was realizing that Ellie wasn't here to celebrate with us here on earth.  She ADORES Conner.  She would follow him around the house, giggle at everything he said, and also give him the biggest hugs.  Ellie Kate loves Conner; she idolized him here on earth.

Henry tried to give his balloon to Ellie Kate today.  He got it out of the car and stood on his tip-toes, holding the balloon up as high as he could.  Then he said, "Ellie!  Come down and get the balloon!  Ellie Kate!  Come down and get it!  Here it is!!".  It was so precious yet so very sad at the same time.  Parenting through loss is tough,ya'll.

I'd like to ask you to pray for a friend of ours - a good friend of Ellie Kate's.  Her name is McKenna Johnson, and I've mentioned her before on Carepages.  McKenna's brain is very sick and now it's affecting her body in terrible way.  Kenna hops around like Ellie did and she doesn't walk or talk, like our EKM.  Would you pray for McKenna?  Pray for healing and restoration.  Pray that God would hold her family close and that He would give her parents Matt and Marianne divine wisdom and guidance.  Also, please pray for McKenna's older brother Micah and her little sister Marlee.  We love the Johnsons so much and our hearts hurt for them during this time.



Be blessed this evening, Dear Ones!
Ryan

He Has Given Me More than I Can Handle!

Ever hear the saying, "God can't give you more than you can handle"?  Well, I'm here to tell ya' that it ain't true.  That's right.  I do NOT believe that God won't ever give us more than we can bear, more than we can take.  On the contrary, I think when God is really working in us and through us, we will constantly be faced with more than we feel that we can take.  Sometimes Friends, it is just.too.much.

Yesterday was one of those days.  We took our first family photo without our Beloved Ellie Kate.  How do you prepare emotionally for something like this?  I surely do not know.  We took two cars "out to the country", where we met our precious friend and photographer, Holly Hall.  The entire way there, Henry was talking about Ellie Kate.  I know it was weighing on his heart to know that she wouldn't be in the picture, even if he couldn't put that in words.  

I didn't have much time to mourn Ellie not being with us because Henry was acting so terribly.  Really and truly, it is probably the WORST I have ever seen him act.  I think his heart was overwhelmed and he didn't know why, so he acted out and disobeyed.  I have no idea how Holly was able to get ANY sort of good pictures, but she sure pulled it off.  Yep, she's a miracle worker.  

Isn't it lovely?  And this is just a sneak peek!  Friends, One is so obviously missing to me.  Ellie Kate is missing.  For a moment last night, during Henry's screaming, I imagined EK hoping around in the grass, laughing and enjoying the crisp air.  I guess it was good that I couldn't let my mind wander for too long, as Henry needed me.  

When we got home last night, I had a few moments to myself to break-down.  I stayed in the shower for a long time, weeping.  I walked to Ellie's closet where her clothes still hang, and I smelled her shirts.  They no longer smell like her.  With every one of those little outfits comes a precious memory - a memory of her wearing those clothes on a particular day or for a specific event.  It's just such a precious thing.  I picked out a shirt of Ellie's and held it all night as I cried.  I'm just being real folks, because the Church needs to know what real hurt is like. 

This morning, I literally woke up with my heart hurting.  I do have some cardiac issues going on, so it didn't surprise me too much to feel that heaviness on my chest.  It's more than anxiety or fear.  It is true pain, true pressure.  It's too much.  And that is why I KNOW, without a shadow of a doubt, that God has truly given me more than I can handle with the death of my Daughter.  If it wasn't too much, then I wouldn't run to Him.  Does that make sense?  

Do you have something in your life - a hurt, a constant struggle, a terrible memory, that just seems too much?  Run to Jesus.  Run to Jesus.  Run to Jesus.  That, Dear Ones, is what we are supposed to do with our heartache.  That's how God has made us - to NEED Him.  Cast your cares on Him [1 Peter 5:7]. Throw those cares to Him, throw them at Him - He can take it. Surrender them to Him as a holy sacrifice. Just give them to Him, Friends.  It's all we can do and it's the way to freedom, the way to comfort, the way to healing.  It is THE ONLY way to break-free of our hurting hearts; it's the only comfort and hope that we have.  

I am not happy that Ellie Kate is no longer here on earth with me.  I wrestle with the Lord about it every single day. However, I am grateful for the way God is using this to cause my need for Him to grow.  Would I so desperately need Him for every breath if it weren't for the heartache?

 The broken heart I have (physical, spiritual, emotional) has no hope apart from my Lord and Savior.  I give Him my broken heart at this moment, and I will give it to Him again in a few minutes when my heart gives way for the millionth time.  I will continue to do it because HE IS MY HOPE, and He alone is yours.  If He isn't your only hope, Sweet Ones - If you don't know Jesus as your Lord and Savior, ask Him in.  Ask Him to save you from this lost and hurting world.  Ask Him to save you from seperation from Him in eternity.  Ask Him to be your Lord - the ruler of your life.  It is FREEDOM, not rules or shackles.  HE is FREEDOM.  

Psalm 102: Hear my prayer, O LORD; or  let my cry come to you! 2 Do not hide your face from me in the day of my distress! Incline your ear to me; answer me speedily in the day when I call! 3 For my days pass away like smoke, and my bones burn like a furnace. 4 My heart is struck down like grass and has withered; I forget to eat my bread. 5 Because of my loud groaning my bones cling to my flesh. 6 I am like a desert owl of the wilderness, like an owl of the waste places; 7 I lie awake; I am like a lonely sparrow on the housetop.  11 My days are like an evening shadow; I wither away like grass. 12 But you, O LORD, are enthroned forever; you are remembered throughout all generations. 13 You will arise and have pity on Zion; it is the time to favor her; the appointed time has come. 14 For your servants hold her stones dear and have pity on her dust. 15 Nations will fear the name of the LORD, and all the kings of the earth will fear your glory. 16 For the LORD builds up Zion; he appears in his glory; 17 he regards the prayer of the destitute and does not despise their prayer. 18 Let this be recorded for a generation to come, so that a people yet to be created may praise the LORD: 19 that he looked down from his holy height; from heaven the LORD looked at the earth, 20 to hear the groans of the prisoners, to set free those who were doomed to die, 21 that they may declare in Zion the name of the LORD, and in Jerusalem his praise, 22 when peoples gather together, and kingdoms, to worship the LORD.23 

 Psalm 109:21 But you, O Sovereign LORD, deal well with me for your name's sake; out of the goodness of your love,deliver me. 22 For I am poor and needy, and my heart is wounded within me. 23 I fade away like an evening shadow; I am shaken off like a locust. 24 My knees give way from fasting; my body is thin and gaunt. 25 I am an object of scorn to my accusers; when they see me, they shake their heads. 26 Help me, O LORD my God; save me in accordance with your love. 27 Let them know that it is your hand, that you, O LORD, have done it. 28 They may curse, but you will bless; when they attack they will be put to shame, but your servant will rejoice. 29 My accusers will be clothed with disgrace and wrapped in shame as in a cloak. 30 With my mouth I will greatly extol the LORD; in the great throng I will praise him. 31 For he stands at the right hand of the needy one, to save his life from those who condemn him.

Ryan

Broken Computer and Broken Blood Pressure

My computer gave up the ghost!  It is dead; ka-put.  It was bound to happen since I'm on it so often, and because of it's age, and because of the fact that I have two little monkeys/boys who like to "learn" and play games on my laptop.  Sigh.  Not sure what will become of it, but I do know that I can't blog from my phone (well, I technically could, but trust me, it wouldn't be pretty).  Thankfully I am able to use my Daddy's computer to update the blog today.  It's one of the MANY blessings of living so close to my parents! 

On to Updates . . .

My blood pressure has me all out of whack, folks.  I'm now on two BP meds, but they are really taking their toll on me.  I find myself slurring words and becoming disoriented because of low pulse-rate.  I'm tiring very easily and I'm forgetting things, such as Lucy's important GI appointment yesterday.  UGH!  It is NOT fun to be out-of-it!  Seriously, ya'll.  My doctor is working on my meds and re-checking my blood work to see if we can get things straight.  I'd love your prayers for clarity and that things would even out. 

Lucy is having cluster seizures at night and in the mornings.  We hoped that these pesky things would stop once we upped an additional seizure med, but that hasn't been the case so far.  We know she has a seizure disorder and that she will seize; the tricky part is knowing how much seizing is too much and when we need to step in an intervene with rescue meds.  She's still so small, and I hate having to use the strong anti-seizure meds that we had to use with Ellie the last few years of her life.  It's a bit scary too, because Ellie's seizures seemed to be under control when she was this age, so it worries me to know that the seizure clusters can cause permanent damage in Lucy.  She's come so far and I don't want to see her have to continually take steps back. 

A FUN thing happened with Lucy this week - she found herself in the mirror!!  This is HUGE, Friends!!  Ellie Kate was never able to really see anything in the mirror and would never look directly at it (rarely looking at people and objects directly).  We've noticed that Lucy's eyesight seems to be better than EK's was, but seeing her look in the mirror this week and smile consistently has meant the world to me!!  It has brought us SO MUCH JOY, I cannot even tell you!  Lucy sees that cherub little girl in the mirror, and she likes her:)!  So, so precious and such a true gift. 

Henry is doing much better with his asthma - thank you for all of the prayers!  Conner is still going strong, happy boy that he is.  The boys are just so precious to my heart and lift my spirits more than I could have ever thought possible. 

In closing, I want to go ahead and ask you to forgive me for anything I may have forgotten about or may forget in the future due to my current state of mind.  I know I've already dropped the ball on a few important things, and I'm thankful that my family and friends have been so gracious and supportive.  Silly blood pressure.  Now, on to try to go fix that computer of mine!! 

The Crazy Day

What a day!  Last night was a bit scary.  Henry wasn't breathing well, despite his inhaler and the nebulizer.  It was so scary listening to him struggle to breathe.  It brought back too many memories, and I was on edge the entire night, watching his every breath.  By around 7am, we decided to take him to the ER.  His fever was so high and his breathing so rough.  They got us right in and got to work on Henry Mac.  

It looks like Henry just has bad allergy-induced asthma, as well as a virus and a bad case of the croup. He is such a trooper and took his steroid shot, his breathing treatments, etc.  We were so proud of Henry, so we let him choose one little gift in the hospital gift shop.  He was excited to get in and quickly started piling up girl toys and gifts.  He told me that he was picking out gifts for Ellie Kate.  I wasn't sure what to say or do, so I just watched silently as he carefully picked out special gifts.  Did he forget that Ellie was dead?  Was he confused because of his sickness?  But then he ran up to me and said, "well, these would be the perfect gifts for Ellie if she wasn't dead".  Oh, my heart!  Sweet boy LOVES his sister and I think being back at Children's made him think of her.  He's been drawing pictures of her all day.  

At the time that we were at the hospital with Henry, Stan was undergoing his heart surgery.  Thankfully, Stan's surgery went well too and he is actually at home tonight!  We are so grateful for your prayers for Henry and for Stan. I think Mike is completely worn out from being at two different hospitals and going to work today.  I'm still trying to lay low with the new blood pressure medicine and the virus it feels like I'm coming down with (I think I'm just coming down with Henry's sickness).  Fun times.  

It's always something, right?  I know it's like that for everyone.  Makes you long for Heaven doesn't it?!  Lord, let your return be soon!

Ryan 

Matters of the Heart

The human heart is a strange thing, isn't it?  We all have so much that we carry within us, within our hearts, so to speak.  I know I do.  And much of what's in my heart has been coming out lately, and it hasn't been pretty; cleansing, but not pretty.  

My heart has been overflowing with the misery of missing my daughter.  For the last few days, it truly has felt like my heart was breaking.  My tears have flown and my crying out to God has been intense.  I have felt angry, and that really isn't something that I've felt in a while.  I think it's good, though.  It's good to work through grief, although it is sometimes so ugly, so awful, so terrifying, so purifying . . . 

These things have affected my physical heart as well.  My blood pressure has been crazy.  Thankfully, I got on some meds today and I'm praying it will all work out.  It's crazy how the spiritual, how the inner-man affects the physical.  

Many of you may remember that Mike's Daddy has been having heart trouble as well.  Stan will have a small procedure tomorrow morning that will hopefully correct a very big problem.  Our children adore their Paw-Paw, and we would love your prayers that everything goes smoothly and that everything is corrected as it should be.  

Tonight, Henry is struggling with his asthma and with bronchitis.  Poor guy can't get over his fever and hard breathing. He's allergic to the antibiotic that he was given yesterday, so we are waiting to hear what the next step is for his treatment. Hopefully he will rest well tonight and will soon be better.  He misses his school and friends!  

Thank you for standing by us.  Thank you for loving us, even during the ugly times.  

Ryan