On My Way To You

Loved that Wright knew where he was going!

So much comfort knowing he saw Jesus.

He was not scared.

He was ready.

I love and miss my sweet boy.

Below are the lyrics to Wright's favorite song:

On My Way to You
By Mercy Me

Almost there, almost where I'm supposed to be
It's not all clear, but you keep showing me
With every step, the more my heart moves to your beat
Just like where I'm headed, there's joy in the journey
Teach me to think like you think
Show me the things that are true [ohh]
Finish the work you have started in me
As I'm on my way to you
As I'm on my way to you
Create in me a pure heart and make me new
Less of me, Jesus more of you
Here I stand, still I'm drawn down to my knees
It's not my strength, but Your's that carries me
Teach me to think like to you think
Show me the things that are true
Finish the work you have started in me
As I'm on my way to you
As I'm on my way to you
Yes I'm on my way to you
Teach me to think like to you think
Show me the things that are true
Finish the work you have started in me
As I'm on my way to you
As I'm on my way to you
Yes I'm on my way to you
I'm on my way
I'm on my way to you


Many times in Cincy we would play this song. It helped Wright relax, sleep, and gave him so much peace! We played it at home in Wallace and even in Chapel Hill. God finished the work He started in Wright.
Now our family plays this song to remind us of Wright.
 We are on our way to him!

This is Wright singing another song by Mercy Me....I Worship You! We never got on video On My Way To You.

THE CHAIN WILL LINK AGAIN

We knew little that morning

God was going to call your name,

In life we loved you dearly

In death we do the same,

It broke our hearts to lose you

You did not go alone,

For part of us went with you

The day God called you home.

You left us beautiful memories

Your love is still our guide,

And although we cannot see you

You are always by our side.

Our family chain is broken

And nothing seems the same.

But as God calls us one by one,

The chain will link again.

~~Unknown~~

We love you and miss you so much WRIGHT !!!!!

Precious Gifts

Waiting to pick up my precious first born from school. I love the way he grins when he sees me. I love the way he is quick to still hug me, tell me he loves me and jumps in my lap. That smile of his takes my breath away..............Thank you God for my two boys.......My gifts from you!!

I prayed for this child and the Lord has granted me what I asked of him. So now I must give him to the Lord. For his whole life he will be given over to the Lord ~~~ 1 Samuel 1:27,28


These precious babies are gifts ... Children are a gift from the Lord ~~~ Psalm 127:3

Play with your gifts....let those children have fun.....laugh, alot....let them get dirty...let them drink coffee......make a mess.....let them be children.............children make a joyful noise......play outside....don't take away their security blanket ...ever........forget your schedule or routine....they will live if they drink a bottle after age 1......skip nap time....play hooky from school and work......rock them to sleep....go barefoot.....let them eat dirt.......don't wipe their face.....cook with them....pray with them......let them see you have fun.............let them see you cry...........let them see you make mistakes..............let them see you love unconditionally.................burp with them.....ride bike in the rain......make mud pies.......let them pee outside.....let them have candy...color with them...play video games with them.....dance, dance......let them wear what they want to sometimes....make forts with them........make silly noises.....let them stay up late.....let them make a mess at bath time....read to them ....buy them a pet.....take time with them.....let them be loud...do laundry later....clean your house later...play games with them.....paint with them....take them to church.........let them sleep in your bed....sleep in their bed...Love them....tell them you love them......LIFE IS TOO SHORT NOT TO ENJOY EVERY SECOND.  I am so glad we do all these things with our gifts and more!!! I love the way Hill reminds us of all the fun things we had the chance to do with our sweet angel Wright!!! 

Your children are the most important gifts you will ever receive!!!

We miss our Wrightsie Roo more and more every passing day! Thanks for your continued prayers for our family. We will need them for a long time to come.

Missing our Wrightsie Roo!!

Since my last post, our Wrightsie Roo went to be with Jesus. I find myself thinking about him all the time and what he must be doing and seeing. I know without a doubt that he is just great and is having a "good,good day" as he use to say! I think about so many tender moments we have shared and it is literally hard for me to breathe sometimes. Oh, I can not wait to join him!


If it were not for Denny, Hill and our families, I would of probably crawled in my bed and still be there. Praise God they are here and still need me and I definitely need each of them. Please pray for them too! They try so hard to help me but they are hurting too. We all loved Wright so much and he brought an undescrible joy to all of our lives. He had a unique relationship with each of us. He truly was our angel on earth.


I find lately that I have random thoughts, incomplete thoughts......I spend alot of time thinking, crying, playing memories over and over in my head. I sit in Wright's room and smell his things. All the special things that we use to do flood my heart and I cry. Tears of joy because I have so many sweet memories of my time with Wright, but mainly tears of sadness because my heart aches and my body longs to hold him and kiss his sweet lips. God's grace is so awesome though!!!. I rarely recall "painful memories" from the past few years and even the last weeks with Wright.  As quick as one comes into my mind...it leaves and it is immediately replaced with a memory that makes me smile. Thank you Jesus!!!

 Thoughts

~~~~One of the most amazing things about God is his ability to use anything and everything- even bad circumstances and our wrong choices- to bring about His own good & perfect will~~~~ Godliness involves putting our hope in Christ~~~~~~ Always do your best to raise children who love God~~~~~ Our losses take time to heal, and many scars stay with us, but Christ has both the power to redeem our circumstances and the commitment to carry us through each day of the healing process~~~~Never doubt that people can truly change~~~~God is at work behind the scenes in your life, providentially preparing you for His purposes~~~~Greatness has nothing to do with possessions or position– not in God’s eyes~~~

Continue Praying for our Family

So sorry it has been so long since I have updated our blog, but quite honestly the last few months have been very hard emotionally. I think once we hit being here a year we all sort of went numb not knowing when we were ever going to go home. We also found out that Wright's gvhd (graft versus host disease) was chronic in both his liver and skin.This was VERY hard for us to swallow.  Everytime we tried weaning his immunosuppressives we would end up in the hospital with a fever or gvhd flare. What does this all mean? Well, we really dont know at this point except he will likely remain on immunosuppressives for a very long time. He is not in pain which is a complete blessing and he has a good appetite which sometimes is not the case with liver gvhd. We have so many things to be thankful for inspite of all the challenges we have faced and will continue to face.  Our goal is to get Wright stable enough to come home. Our visits home have been the absolute best medicine for him physically and mentally. Once home we will be able to go to UNC weekly to see a BMT physician that left Cincinnatti Children's a year ago. We will travel to Cincinnati monthly. Wright will receive homebound school, physical therapy, occupational therapy and speech therapy at home for next few years.  Our biggest concern is going to be keeping him well and keeping old viruses from reactivating while we continue to suppress his immune system to settle his active t cells down.  Also, preserving organ function. His liver has taken a real hit and sometimes gvhd can cause permanent damage to the liver. Our liver doctor reassured us he would be eligible for a liver transplant should he go into liver failure. Not sure how "reassured" we felt after that appointment. The thought of another transplant made us sick to our stomachs. His kidneys also have had some trouble so we have to constantly monitor them. On a more positive note his bone denisty scan was surprisingly on the curve which is almost unheard of with all the steroids he has had in the past year and he is actually headed towards his projected growth path. His last PT evaluation was good as well. His therapist really feels once home he will blossom. So what we need from all of you......please pray for our family to remain strong.....pray for us to go home soon.....pray for our transition back together as a family to be seamless. We need to be together more than anything! I completely trust God and His plans for our family and I know His timing is perfect!

Wow.....One Year.....

Today is exactly one year since Wright and I were flown from NHRMC by plane to Cincinnati. Within days we were told that a bone marrow transplant was our only chance to cure Wright's rare immune deficiency, XLP with secondary HLH. Without a transplant he would eventually get an infection his body could not recover from or even worse lymphoma or leukemia.  We also learned that Wright had developed another rare condition, MDS (myeloid dysplastic syndrome) which is Pre Leukemia and abnormal cells were rapidly growing. With the additional diagnosis his transplant was pushed up 3 months. Nothing, absolutely NOTHING could have ever prepared us for this past year. With all of the challenges, fear, uncertainty and grief we have faced this past year.....somewhere along the way we have learned more than we could of ever imagined. We have learned to let go of things not in our control. People ask us all the time how do we do it? Our answer simply is God. Without our faith and trust in God we would be completely lost.  We have also learned so much about one another. I believe this experience has brought the four of us closer together than ever before. We have learned to spend quality time because we do not have the luxury of quantity of time. I have seen Denny at his absolute lowest and I still think he is the strongest, bravest, most amazing man ever. He has seen me totally lose it and almost not be able to put one foot in front of the other and he has helped me through it. We have seen both of our boys suffer and hurt in completely different ways. But we have done everything we possibly could to survive and provide as much stability and normal as we could for our boys. We have learned there are so many awesome people on this earth that go above and beyond to show us we are loved. These people include our friends, family, church and even strangers from home as well as new friends, even more strangers and an awesome team of health care providers and hospital staff. Wright is slowly making progress from his last hospitalization. His mobility really took a hit.  Each day I see improvements. Each day here is progress and a day to rejoice!!  We will do whatever it takes for however long it takes.

As Hill's letter to me above said "Our family is going to be together some day". We completely trust God and His plans for our family. Please continue to pray for our family and thank you God for all our blessings!!

Just to share today in Wright's devotion for September 20 his bible verse was....
The Lord directs our steps, so why try to understand everything along the way?  --Proverbs 20:24

It goes on to say that God has a perfect plan for our life, so to trust Him and try to see things from His point of view. The simple act of trust will keep you from weighing yourself down with little frustrations.

For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but on what is unseen, since what is seen is temporary, but what is unseen is eternal.
--2 Corinthians 4:17-18

Full Body Scans .....in a bit

Please say some prayers for Wright today. Today is day five with a fever. Just to rule out all possible causes he will receive a full body scan. Cultures still negative and he is covered by a string of antibiotics for infection and steriod schedule is being tweaked. I feel very postive today which is a good thing!!!Thanks!!