Undone

Recently, I came to a conclusion.  Maybe it was the deep depression I was in; maybe it was the counseling and group therapy I took part in, that sparked some of these thoughts.  Nevertheless,  I came to a conclusion:  I am tired because I am living the same life twice.  WE, as a family, as a couple, are living the same life twice.

The joy, pain, thrills, and agony that came along with Ellie Kate's journey - we are experiencing those again through Lucy Belle.  We knew this would happen when she was diagnosed in-vitro but it is SO much different living it out.  I wouldn't change a thing, and the Lord brought Lucy to us at the perfect time and for His glory.  But, I am human and this is hard, ya'll.

Fighting and advocating for your child is so very difficult.  Ask the parent of any pediatric cancer patient, any pediatric hospice patient, anyone who is parenting through a health crisis; if you ask "how they do it", most will just say, "because I have to; because I want to; because I love my child". And that's the truth.

 As parents, we are Navigators.  We are Warriors.  We are lovers of our children, lovers of our husbands, lovers of our families.  We push, we annoy doctors and nurses with endless questions; we keep on and keep on and keep on because we want what is best for our child.  As parents of severely ill children, we do not have the blessing of planning for our child's wedding.  We get to plan for funerals.  We don't schedule dance classes or baseball; we schedule doctor appointments, therapies and meetings with specialists.  For example, today I called my friend Kristie (whose daughter Emily passed away in last year's big tornado), and asked about shepherd's rods for wind chimes.  I didn't call her about the shoes her daughter was wearing, or where she got that outfit, or where her daughter was taking dance;  I asked about a shepherd's rod so that I could hang a wind chime at my daughter's graveside.  It's just so surreal.

I arrived at Ellie's Spot today to find that all of her beautiful (yet faux) flowers in her vase had been thrown out.  I didn't check the calendar at the cemetery, so I didn't realize that all flowers and items were trashed on March 1st.  My heart sank as I saw that blank little Spot.  The money I had spent on those beautiful flowers; the tears and love that went into them . . . and now they have been trashed.  I know it's the rules, but it still hurts.  I may even find that the wind chime is gone when I visit again.

Tonight, the Lord sent me a reminder through His Word through a precious friend named Angeleigh.  She often encourages me with God's Word via text, and her messages are ALWAYS timely.  Tonight, Angeleigh sent me this:  "Those who sow in tears shall reap with shouts of joy!"Psalm 126:5.  I actually saw that verse twice today, so I know the Lord is encouraging my heart even through my heartache.  This pain is not in vain.  YOUR pain is not in vain.  He brings beauty from ashes.  

LUCY UPDATE:
As you know from my post earlier today, Lucy is still having a hard time with screaming.  It's heart-breaking and we will do whatever it takes to make her comfortable.  Today we were able to visit with Lucy's team of doctors, and we've come up with a plan.  First of all, we will be experimenting by eliminating one of her main NKH meds "cold-turkey".  We've stopped it as of tonight, and we are praying that it will help give Lucy some pain relief.

The downside of this is that Lucy will likely have more seizures.  Do you choose non-stop pain and screaming or seizures???  For now, we feel like we should put up with seizures rather than watch Lucy writhe in pain.  This could also make her more lethargic, and could cause a host of problems.  I'm nervous, to say the least, but I am hopeful.

Thank you for praying and for keeping up with us during this part of our journey.


Completely Undone (which is where God wants me),

Ryan

Wonderfully Made and Prayer

Yesterday was "Wonderfully Made Day" at our church home, Bridgeway.  I am SO incredibly proud of our church!  I'm grateful to be a part of a body that values those with special needs of all kinds.  Check out the Wonderfully Made Mission Statement from Bridgeway:

“The Mission”

“Our role in ministry is to help people grow a tender, unshakable love for Christ.  God gives us tough situations that seem hard, but in fact, they are merciful” – Children Desiring God

We are not here just so the families won’t feel bad, but so that they will come to know Jesus.  We are here to encourage them so that Christ, and not the disability, will be the center of the home.  

Here are some points we covered yesterday, along with the information that was sent home to each parent.  Read it.  Take it all in, and then talk about it as a family.  We want to change the culture.  We want special-needs individuals to be created equal, and that starts at home!  

"We want you to be aware of what we discussed so that you can welcome discussion within your home.  The best thing children can do is to ask questions about those who might look or act differently than they do.  Do not be afraid of their questions – invite them and be honest with your children!  Knowledge is power where special needs are concerned, and you will help teach your children to love EVERYONE well. 

• ·         God Made Me!  Psalm 139:13
• ·         God made us All just the way that He wanted! Psalm 139:14am
• ·         God loves us ALL just the way that we are. Psalm 139:14am
• ·         Some people have a disability or have special needs; that means God made them a little differently.  Exodus 4:11
• ·         Some people may not look the way that you do.  They may not talk like you, move like you, or eat like you.  That’s okay!  I Samuel 16:7b
• ·         God has a special plan for EVERYONE’S life! Jeremiah 29:11
• ·         God is in control of everything, including me, you and all of those around you! Matt. 10:29, 31
• ·         Even when I am sad and hurting, God is with me and God is with those around me with special needs and disabilities.  Psalm 46:1
• ·         God watches over me and over my friends with special needs.  Psalm 23:4
• ·         God takes care of ALL of our needs Phil. 4:19
• ·         God gave His son Jesus for ME and for ALL of those with special needs.  He gave his son for ALL people!  Romans 5:8
• ·         God makes some people with special needs.  2 Corinthians 4:17
• ·         God loves us ALL just the way that we are!  Jeremiah 31:3b

Also, please be sure to encourage your family to avoid the following words, which are considered very hurtful for those with special needs as well as for their families:  Retarded, Short Bus, Lame, Crazy, and Dumb"

How great is that?  We are teaching the generations how to love and accept those who may be different!  By the way, if you want more information on Bridgeway's Wonderfully Made Ministry, please email me at tullyryan@hotmail.com.  Lord, spread this truth like wildfire!  

Now, on to some ways to pray for our family . . . 

Lucy is having a terrible time.  That "abundant life here on earth" isn't happening, at least in this momma's eyes.  Her screaming is increasing, despite the heavy meds we've added.  We've done everything we know to do: we've visited the ER and clinic almost every day last week.  We've switched the times meds are given.  We've cried out to her team of doctors, and most of all to the Lord.  We are at a loss, ya'll.  

My biggest fear is that this is NKH progressing, and not a problem that we could fix (ex: UTI, kidney stones, ulcers, etc).  I do NOT want Lucy's life to be one full of pain.  No mother wants that!  So, we need your prayers.  

Prayer Requests:

1. Pray for Lucy's pain to be controlled

2.  Pray for us and for her doctors as we navigate through this

3.  Pray for clear answers where her pain is concerned.  

4.  Pray for me as I've once again been having terrible migraines

5.  Pray for Stan (Mike's daddy) as he undergoes a cardiac ablation today at Baptist hospital in OKC.

6.  Pray for us as storm season approaches (first chance is this week), and I for one am still incredibly affected by fear where tornadoes are concerned (all bc of last year's devastating storm).  

Your prayers and friendship are invaluable to us!

Ryan

Quick Lucy Update

Lucy's having a hard time with her gut.  It's not working well, not working right - much like Ellie Kate.  She's in a lot of pain, and the added stress is causing more seizure activity.  We took Lucy to the ER last night and were able to get a few things ruled out.  We will be going back to the doc today to try to work on things.

Of course, Mike and I immediately think about a possible intermittent obstruction, like Ellie Kate had when she was younger.  The symptoms seem to be much the same, although we are just the parents and not the doctors:/.  We are pushing hard for answers and also pushing to keeping Lucy comfortable, as the pain has been incredible for her.  As a parent of a special-needs, non-verbal child, you have to advocate in crazy ways sometimes.

Thank you for praying for our family!

Queen with Class

You may recall my post from back in January - Fired Up and Acting On It, where I called out the Lifetime Network and more specifically, Miss Kim from the pageant show  "Kim of Queens".  Miss Kim had used the words "special needs" in a mocking and inappropriate manner on the first episode of her show.  She even mocked with fake sign language, and it hurt my heart to watch.

I posted, asking you all to stand up for those with special needs, many whom do not have a voice.  I asked you to contact Lifetime and Miss Kim online and on Twitter, and you delivered!  You posted and stood up for this sometimes forgotten group of people (which includes my beautiful girls). I was blown away by your response and support!  And guess what?  Miss Kim paid attention.  She listened and she gracefully responded.  


Below are two of her responses to my blog:
@ryanemclaughlin @lifetimetv please accept my heartfelt apology! So grateful you are holding me accountable!

@ryanemclaughlin @lifetimetv beautifully written & please accept my heartfelt apology. I love ALL people & believe God made us all special.

Since I personally called Miss Kim out, I wanted to be sure and share with you her kind messages. In a world of so much negativity, I was truly blown away by her heartfelt and sincere responses. She didn't have to take the time to do that, but she did. And because of that, I enjoyed watching "Kim of Queens" last night, as she works to develop young women into strong, confident individuals who are able to face the world in any situation. Say what you want about pageants and all that goes with them, but this woman's focus truly is to better young women and prepare them to be future leaders. I'm impressed.

So thank you, Friends for standing up with me on behalf of all of those with special needs. And thank you, Miss Kim for having the character to gracefully respond to my blog post. And, I hope you all enjoy some photos of MY very own Pageant Princesses, Miss Ellie Kate and Miss Lucy Belle!

Ryan

A Big Confession

I have a big confession to make, and although I don't feel led to share every detail with you, I am prompted to share a few things.  It's burning on my heart, even though it is extremely difficult to share.  It's not something I would choose to tell the world, but God often asks us to do things that make us feel uncomfortable.  It's another way to trust Him, isn't it?  So, here it goes . . . 

As some of you may know, I've been dealing with health issues since sweet Ellie Kate was born over eight years ago.  Those problems have increased, and new ones have popped up, since Ellie went to be with Jesus.  I've had no doubt that the mental and spiritual have collided with the physical, causing some serious issues.

Friends, I have been depressed.  It's important for me to share that with you because I believe the Christian Community, and even the Church as a whole, often overlooks depression.  It's not seen as a true sickness in many places.  Often times it is dismissed or even worse, people struggling with depression are told that they just aren't strong enough, that they should be able to rise above because of their faith.  Others are told that if they would just work hard enough, distract themselves enough, get into the Word enough, the depression would subside.  I'm here to tell you that often is NOT the case.

And while it may not surprise you that I've been depressed (I'm sure those close to me have seen signs for a while), it may catch you off guard to know that I have been severely depressed.  There are many reasons for this severe depression, for this downfall.  Some contributors would be medications I've been trying for my heart and for my migraines (have you seen the list of some of those side-effects on the commercials?!).  However, I fully believe that even though there has been a chemical reason for this darkness and despair, I believe it's unveiled the fact that I am hurting and I can't deal with it on my own any longer.

So, I've been making some big life changes.  With the help of family and several professionals, I've been able to focus on myself.  I used to think that was a bad thing, so I would stay incredibly busy helping others.  I would hide and avoid my sadness, thoughts and depression by loving on others and serving, staying TOO busy.  This meant neglecting myself and often-times neglecting my family, and ultimately my Father-God.  This is NOT how Jesus wants me to live my life.  He does NOT want me to stay too busy.  He does NOT want me to avoid the pain, the thoughts, the sadness that I feel.  He wants me to address it and learn to cope with it.

I'm learning, with intense training.  I'm learning that I have to be healthy mentally, physically and spiritually in order to be all that I want to be - all that I can be.  And this means changing some things in my life.  Right now, that looks like taking a step back socially, using my energy to focus on my relationship with Jesus, with my family and even with myself.  I've set limits on my Facebook presence.  I've set limit on my emails, on my Plexus business, even on the Blog.  I've set limits on my involvement with Hope Link and with social activities.  And you know what?  It has been SO FREEING!!

You see, Jesus doesn't want us running around like a chicken with our head cut-off.  He doesn't want us running from person to person without a break, trying to serve those we think we are called to serve.  First and foremost, we are called to serve Jesus, and learn to know Him more.  Then we are called to love and serve our families.  We are also called to take care of ourselves (I've been forgetting that part!).  Then, we are called to love and serve those around us.  Sounds so simple and easy to understand, and yet I was missing it all, trying to stay busy and avoiding my feelings of hurt and loss over my Beloved Daughter.

Now, I am healing.  I am holding tight to my family and learning how to better care for myself.  I'm getting my priorities straight and finally facing the feelings I've had over Ellie's death, over the devastation of NKH, over the sickness of Lucy, and all that has come with it in our lives.  It's been amazing so far, and it's just the beginning!

If I post less-often, if I'm not on Facebook much, if I don't return your email, call or text, know that it's because I'm trying to get my priorities straight.  That includes cutting out stressors of all kinds.



My hope in sharing this reality is that you will know these things . . . 

1. Believers DO suffer from depression, and sometimes it's a deep, blinding depression
2. Depression doesn't mean that you don't have enough faith or that you aren't trusting Jesus enough.  It's a true illness, and is something that needs to be addressed.
3. It's important for us, as Believers, to get our priorities straight.  We must cut out things that add stress to our lives.  We must push into the Father, and recognize the things that He truly is calling us to do.  
4. We can't avoid our troubles, our hurts, our disapointments by staying busy.  I promise, it WILL catch up with you.  Seek help and slow down.  
5. Taking care of ourselves is NOT a selfish thing when we do it in a balanced way.  We must take time and make time for ourselves so that we can be all that God wants us to be to our families and to the World!

I hope you find some encouragement in this, Dear Ones.  I hope that this admission of mine sheds light on depression and on those that might be hurting around you.  I pray that God uses this to bring freedom to your heart, to your mind.  I pray too that it inspires you to seek out help, if that is something that you need.  

Thank you for listening and thank you for your continued prayers!!

Ryan

Take Me To The Cross

Today is Ash Wednesday, the first day of Lent; and while I didn't grow up necessarily celebrating Lent in a traditional way, as an adult I am now seeing the importance of this dedicated time of focus.  I think Ben Nockels puts it most beautifully here:

Overview of Lent

By Ben Nockels 

Come, let us return to the Lord, He has torn us to pieces but he will heal us; he has injured us but he will bind up our wounds.  After two days he will revive us; on the third day he will restore us, that we may live in his presence.  Let us know; let us press on to know the Lord.  As surely as the sun rises, he will appear; he will come to us like the showers, like the spring rains that water the earth.  Hosea 6:1-3

"Lent, the forty-day period of preparation for Easter, has begun.  Lent reaches its climax during Holy Week, itself a journey within a journey.  Henri Nouwen once described Lent as the season in which Winter and Spring struggle with each other for dominance.  Others refer to this season as a time of "Bright Sadness".  Lent is a time of fasting and mourning, repentance and renewal; a time of identifying with Jesus in His suffering and death in order that we might identify with Him more fully in His resurrection and life.  

It is to the vivid imagery of "Winter and Spring struggling for dominance" that I wish to return our collective gaze.  This picture gives us a glimpse and foreshadows for us what can happen within our hearts and lives over these forty sacred days.  

It's so very earthly and real-time.  You can literally bear witness to the struggle transpiring.  The struggle is all around (and in) us.  An outward expression of an internal reality.  The created universe serving as a guide to the journey toward our own new creation.  Everywhere you look, you can see the world as it is and the world as it could be.  Winter and Spring.  Old and New.  Despair and Hope.  Death and life.  A not-so-amiable team of rivals.  Neither submitting to the other.  Back and forth they go.  

The struggle for dominance lingers on.  Winter looms large.  It kicks and it screams.  It puts up one serious fight.  And just when think your'e in the clear and you'd swear this cold dead season has seen it's last days, it rears its ugly headfor one last laugh and final gasp.  Winter has become an obstinate and completely unwanted guest who has long-overstayed its welcome.  

But then all at once, out of nowhere, Mother Nature runs Old Man Winter off into the distance.  And Spring comes bursting forth, right before our very eyes, in all of its glorious splendor, to take its rightful place.  The earth awakes and shakes off her slumber.  What once lay dormant has now become vibrant.  What seems to have taken place in one single instance has long been brewing under the surface in the deepest recesses of being.  Colors pop and sounds emerge.  The symphony of life is in full roar.  It's as if the songbirds themselves are ushering in new creation with each chirp, tweet and whistle.  Trees bud and flowers bloom. A fresh aroma fills the air.  It's a full-bodied, firsthand, multi-sensory experience second to none.  Energy palpable.  Borderline intoxicating.  Movement everywhere.  Life abounding.  

The fight finished and the victor crowned.  Winter threatened to conquer, but Spring prevailed in the end.  Spring wins.  It always has.  It always will.  A that, my friends, is the very best of news."

(emphasis mine)

WOW. Oh my friends, when I read this, I instantly connected with the Truths shared so beautifully.  As I shared in my previous post, I have been taking a break from many things.  Some things won't be obvious to those around me, and some will.  Maybe at some time, Jesus will give me the freedom to share some details with you, but for now, know this - I have literally been facing this fight of Spring and Life on a personal level. 

 He has forced me to step aside and lay it all down, giving it all up because I am too weak to go on the way that I was.  He has done this is both the physical and spiritual, and I am grateful and scared and excited.  Winter and Spring have been fighting greatly, especially since My Ellie Kate went to be with Jesus.  Spring WILL win, and Jesus WILL conquer, showing Himself mighty to me during this Season of Lent, in particular.  He has promised me this.

So, I will celebrate Lent.  I will participate in the holiness of all that it can unveil.  I will continue to cut things out and set things aside, ignoring what isn't deemed as important to my Father at this time.  I will focus on Jesus - on His life, His death and resurrection during this Season.  And at the end, He has personally promised me that I will see a transformation.  I will see the Victory.  I don't know what it will look like, but I am SO EXCITED.

What do you think about Lent?  Are you willing to celebrate and participate in it this year?  Our church, Bridgeway Church has partnered with Frontline Church and has published a wonderful guide to Lent.  Would you do me a favor and take a look at it- Lent Guide 2014?  Here you will find devotions for each of the 40 days of Lent.  Even skimming through it will bring you closer to the Lord Jesus and the truths of Lent and of the Easter Season.  How will you celebrate?

He has broken me, but He will restore me!

Ryan