Kisses to Last a Lifetime

The true question which fills my heart and mind is this: 

How many more kisses will I get to give 

before Lucy takes her last breath on earth? 

How long do I have to study her face, her hands, 

those most perfect lips and movie-star eyelashes?  

When will be my last time to see and kiss on those 

 cute little earlobes and dimpled hands!

 I don't have enough time left on earth 

to give My Lucy Belle ALL of the millions of 

kisses I truly long to give her in this lifetime. 

"Time" is a true thief; it steals the most precious of things, and I know you can relate.  

I find comfort in this:  God's infallible Word,  offers Eternal Life awaiting ALL children, all of those with profound disabilities AND all of those who've surrendered their life to Christ, asking Him to the be the King and Lord of their life!  

Even in knowing Lucy will soon meet Jesus and come face to face again with Ellie Kate (can you even begin to imagine what that will be like?!), My human, broken and motherly-heart still wonders and wails in so many ways.  Even as a Believer who knows where I will spend eternity, who KNOWS where my Daughters will spend eternity and that they will be completed, perfect, whole, without any pain, without any sickness, without any fear or tears or hunger or confusion . . . even still my heart cries out . . . 

Would you give me MORE and MORE and MORE times with Lucy

and special opportunities to hold her, love on her and sing to her, 

telling her stories about Heaven?

Will you go before us and provide in supernatural ways?

Will you comfort Lucy even now, preparing her heart, body and mind - her Most Precious Spirit for what YOU have in store, Lord?  

We see the signs and know them too well.  We told Lucy we would fight for her life as long as her body told us to keep fighting but now, just as Ellie Kate's body did, Lucy's is showing us how tired it is and how incapable it is of working correctly.  Hardly any wet diapers.  

No bowel movements, even with Senna (laxative given twice daily) plus daily enemas).  Almost constant state of sleep.  Twitching and seizing and muscles moving in a bizare fashion.  Her food and medicine doesn't go through her belly well and isn't absorbed.  Still, she screams and cries, even with pain medication.  Still, she screams when she even sees me bringing a syringe of formula over to her because she's anticipating the hurt.  

How much longer, Oh Lord will the suffering endure?  
Will you take it out of our hands?  

 Truly, My HOPE is in YOU, Lord from where my Help comes from!  
You reign in Heaven and on Earth and I am so unworthy of your goodness, your mercy, your provision, 
and your gentle hand with Lucy and with the other children.  

Please continue your mercy, Most Holy God.  Please continue to pour yourself out to us in this busy time, this confusing time, 
this space in time which is hard to understand - 
a space in time which I thought would be so far away, God. 
 I don't know how it can be, but I CHOOSE to trust you.  
I CHOOSE to take your cup and drink it. 
Not MY Will but YOURS be done!

 Oh, how I want to kiss Lucy's sweet, tiny feet (which are almost as big as Bowen's)!  I want to kiss the nape of her neck a million times over, to get a little kiss and breathe in her heavenly scent.  I want to kiss every dimple in her hand and then do it again a thousand times over! 

Those perched lips - perfectly shaped and perfectly pink when all is well - I want to kiss them a trillion time over again and put Lucy's "make-up" on her again and again until the dryness is gone.

This life is full of things we just don't understand and sometimes we will never understand what happens to us, through us, because of us.  Tonight I find solace in knowing there is NOTHING God does not allow - there is nothing that can be done without Him knowing and approving, just as we've learned from Job.  

And 

Tonight, I also find solace in His Word - 

the ONLY true and trustworthy thing in this life . . . 

Isaiah 55:8-9

8 This plan of mine is not what you would work out, neither are my thoughts the same as yours! 9 For just as the heavens are higher than the earth, so are my ways higher than yours, and my thoughts than yours.

Isaiah 54:10-14 

10 For even if the mountains walk away and the hills fall to pieces, My love won't walk away from you, my covenant commitment of peace won't fall apart." The God who has compassion on you says so.

11 "Afflicted city, storm-battered, unpitied: I'm about to rebuild you with stones of turquoise, Lay your foundations with sapphires, 

12construct your towers with rubies, Your gates with jewels, and all your walls with precious stones. 

13 All your children will have God for their teacher - what a mentor for your children! 

14 You'll be built solid, grounded in righteousness, far from any trouble - nothing to fear! far from terror - it won't even come close!

Care Calendar:  practical ways to assist our family

Helping Hands account: financial support

Get Outta' Town!

My eyes burn as if I have been crying the day away.  But today, I haven't shed any outward tears; I've just had cries from my heart, and those emotions affect your body in strange ways.  I feel like I've been hit by a truck . . . again . . . as if I were hit by one yesterday and got up, back at it today and then . . . BAM.  Struck.  Knocked to my knees; knocked on my face, really.


Henry had an even harder time today than he did the past few days.  His testing and time at school  did not go well.  No amount of encouragement or bribery will help him settle down and focus on testing.  Taking things away and disciplining him doesn't cause him to focus either.  He says, "I just don't care", and really and truly, he does NOT care.  PANDAS, ODD, OCD, Tics . . . whatever Henry has; whatever is going on in his little brain, is preventing him from doing the right thing.  Worse than that, these things prevent Henry from enjoying life.  Mike and I are determined to make things better for our son, IMMEDIATELY.


Please pray for better communication with our new doctor, as I've been trying to get a hold of him since last Friday, when Henry's issues really dangerously escalated.   Mike and I have done everything we know to do and we still haven't spoken to a doctor.  We still don't have a plan.  We still don't know what to do to help Henry in the immediate and in the long-term.  It is infuriating.  On a side note, Henry busted my phone (for the sixth time, bless his heart), and it is still out of commission.  We hope to get it fixed tomorrow, but in the meantime, I am unable to answer calls or texts, and I'm not close to email or social media either.  


We are at a loss. As Henry's mother, I have a peace that God is taking care of him - that He knows what is going on in Henry's little mind and body.  However, I also hurt terribly for him because I want to see him happy instead of miserable.  The only thing I know to do is, #1 keep fighting and pressing for better treatment, and #2 get up again tomorrow and try again.  I can do that for Henry, even if I don't feel like it.  


I am incredibly grateful that my family has helped so much this week, as they have seen first-hand how badly Henry is suffering.  They've relieved me when they've been able to and have encouraged me throughout the day.  Tonight my parents, along with Mike, have decided that it's time for me to get away and have a break.  I'm not sure what that will look like, but it will happen soon.  I would love to possibly go with a girlfriend, but as for where to go . . . it's still a mystery.  Lord, will you make a way?  Will you show us what to do and when to go?   It is SO important for special-needs parents to be surrounded by people who are willing to step up and speak up, letting you know that you must take a break.  And gratefully, my "people" aren't just all talk - they will be helping to make this break happen for me.  Family at work.  The Body of Christ at work.

Is there someone in your life that needs a break?  How can you make that happen for them?  It doesn't have to be a get-away - it could be a night out, a day at the nail salon, a meal for their family, babysitting, etc.  

God's Living Word has been speaking to me and comforting me this evening.  Looking back on the promises of God - the promises He gave us as a family for a life of ministry (little did we know what He was calling us into!).  I'm reading the promises that He gave us for Henry, the healthy baby boy God told me that we would have.  

Isaiah 44:1-5

44 

“But now hear, O Jacob my servant,

    Israel whom I have chosen!

2 

Thus says the Lord who made you,

    who formed you from the womb and will help you:

Fear not, O Jacob my servant,

    Jeshurun whom I have chosen.

3 

For I will pour water on the thirsty land,

    and streams on the dry ground;

I will pour my Spirit upon your offspring,

    and my blessing on your descendants.

4 

They shall spring up among the grass

    like willows by flowing streams.

5 

This one will say, ‘I am the Lord's,’

    another will call on the name of Jacob,

and another will write on his hand, ‘The Lord's,’

    and name himself by the name of Israel.”

Isaiah 47:8-11

“Remember this and stand firm,
    recall it to mind, you transgressors,
9     remember the former things of old;
for I am God, and there is no other;
    I am God, and there is none like me,
10 declaring the end from the beginning
    and from ancient times things not yet done,
saying, ‘My counsel shall stand,
    and I will accomplish all my purpose,’
11 calling a bird of prey from the east,
    the man of my counsel from a far country.
I have spoken, and I will bring it to pass;
    I have purposed, and I will do it.

Thank you, Father for comforting me with Your Word.  It is living and breathing and it comes to me at just the right time, Lord!  Thank you for the relief I've felt from even the idea of getting away.  Would you make that happen, God?  I want to be the best mommy, wife and advocate that I can be, and right now, I am unable to do just that.  Most importantly Lord, hear our cries for Henry!  Capture his heart even now, Lord!  Capture each thought of his and flood his heart and mind with things of you - things that are good and pure.  Give him supernatural peace and supernatural sense of security.  Heal our son, Father!  Please step in and save the day.  We need you, Lord! Protect Lucy and Conner as they too are so affected by what is going on right now.  Let them both feel that security and peace alongside of Henry.  Orchestrate the testing the way you want it to be done for Henry.  May he walk into school tomorrow feeling at peace, sensing your angels and may your presence be thick in those rooms.  I am CHOOSING once again to trust you with my child.  I give Henry to you because He is yours.  

--Ryan