5/1/09 - "I'll Praise You In This Storm"

Look at your hands right before you. I am looking at mine. You see hands that are soft, gentle, caring, loving, but powerful hands that you use to hold your child tight while also using those same hands to lift up to our God in prayer. These hands of mine, they hold my family's hands every chance I get. They touch the face of my beautiful wife, right before I kiss her. They cradle my sweet Kayleigh's tiny body, while she sleeps comfortably and peacefully. These hands fit perfectly together when I kneel at my bed, praying the Lord will heal our child and fix her sick body.

As you type or click at your mouse tonight, look at your precious hands. Know that your hands can do so much for others that you love. What are you going to do with your hands tonight? Are you going to walk in to your child's room and brush through their hair, feeling blessed that your child is alive and well? Are you going to sit next to your husband or wife, and hold their hand, comforting them with your love? Are you going to praise God with your hands, asking our Father to forgive you and others for their sins, and lift up someone special to you in prayer?

Tonight, I am going to hold Aimee tight with both of my hands, comforting her poor soul from a tough day of bad news. I am going to have my phone in my hands, praying that it doesn't ring, praying that the doctors don't call me with more news we don't want to hear. I am also going to be praying that our Lord will comfort our sweet precious daughter through these current difficult circumstances. I will also pray with these hands that my heart will stop breaking.

"Lord, with these hands, I'll praise You in this storm"

Kayleigh is not well right now. Her injured brain is swelling and is deteriorating by the hour. The damaged brain according to the scan today, caused by lack of oxygen and/or blood flow, is showing excess edema/swelling and deterioration of the injured section. Praise God that her fontanelle (separation in skull/softspot) separates to relieve the swelling in her brain or unfortunately her spinal cord would be crushed, causing Kayleigh to have a bradycardia (drop in heart rate) that will not be salvageable by a full resuscitation. Depending on direction of swelling, this may still happen at any minute and I am only praising God because this has not happened already.

Our time with Kayleigh may be short, but we are still praying for a miracle. God is amazing and He can do anything at anytime. However, we have also been praying that God gives us a sign to direct us in a path that allows us to understand His plan. It seems that God's plan may be telling us Kayleigh is on her way home to Heaven soon. She is such a precious Angel here on Earth, so I can't imagine how beautiful she will be in the presence of our Lord.

Aimee doesn't usually post much, so when she asked me to post tonight, I would more than thrilled to let her open up to all of you. She is by far the most amazing person and I am so blessed to call her my wife. Please lift her up in prayer and give her words of encouragement as a Mother's love is far beyond the reach of any words well written on a piece of paper.


What does a mother say? I have wanted to write for the blog, for my therapy, & to document my feelings lately but I can never seem to find the right words. Tonight I feel that I must discuss how I am feeling so please bear with me. By the way, it has taken me 29 minutes to come up with this paragraph.

The last few weeks have been the most difficult weeks of my entire life. It is hard to explain the feelings that I have been having. When we first heard the news that Kayleigh was "brain dead" I was in complete shock. I mean, if they would have said that Kayleigh had an episode or 20 other things I could have believed that I think. But, brain dead? Never.

As you know, it has been a very emotional roller coaster filled with doctors giving grim outlooks. Adam & I have always stuck to our guts & we have always been right. So, what did I feel that night? I don't know. If I was forced to pick a word I would say emotionless. I couldn't even find the strength to be sad, mad, confused, etc. I was just stunned, quiet, & emotionless. I think that I cried once that night. There just weren't any tears to let out. I woke up the next day with my usual denial, determination, & strong faith that I used to have after bad news from the doctors while I was still pregnant. I thought this would carry me, but I was wrong.

The first time that we saw Kayleigh with her eyes open after the news was very hard to take. I think this was the worst feeling that I have ever had involving Kayleigh. To look in my little girl's eyes & feel like there was nothing there is heart breaking. She will always be my beautiful princess but you could tell that she was no longer Kayleigh. Her eyes would roll back & lock into position. She just laid there for two hours staring at who knows what. Feeling comforted in my arms or feeling nothing at all. To feel no bond at that moment was ripping me apart. I always try to stay strong around her but it was time to let that go. I just need to hurt & to be sad. All I could think was, "God, please give me Kayleigh back. Please don't take my little girl's mind."

As the days went on Kayleigh's eyes would start to settle & she would appear to be looking straight on. Two days ago I had the most fabulous visit with her. I have tried my very hardest to remain very hopeful. Not naive, just positive. God has worked miracles on my precious baby before & I was not about to give up on the idea that could happen again. Yes, I realize that we have had 3 EEGs & a CT scan saying that there is no hope but my gut said that it wasn't true. Since my gut has always been right I decided to follow it again.

I played with Kayleigh & talked to her the whole time. I felt that there were times when she was really seeing me. Not just looking in my direction. I kissed her over & over & even played with her cheeks trying to get her to laugh. I honestly felt like she wanted to smile. The doctors tell me that she doesn't feel emotion but I felt her emotions in MY heart. I felt like she was comforted & happy. When we put our hands on her head she instantly responds by relaxing & closing her eyes. When I tried to hold her hand she would open her fingers. I don't think I am going crazy yet. I know that this happened. To feel our bond again was unbelievable.

The thoughts of bringing Kayleigh home to spend time with us all as a family is what has kept me going. I love the staff at the hospital & I appreciate everything that they do for us. However, I just want my baby home, in my arms, in her room, undisturbed, taking naps with us, & going for a walk. I want more than 20 minutes of true family time.

I want Brandon & Allyson to know her, to love on her, to see how cute she is in real life & not just in photos. My heart aches thinking about how they must feel. Losing a sister that they really only met a handful of times. They have been cheated out of a huge part of the most amazing person I may ever know. The kids have been so supportive, loving & patient this past year. I owe them so much. I hope that they will be able to see Kayleigh soon. The RSV ban should be lifted on Sunday. It will be a glorious day. I am so looking forward to our 2nd family photo. Oh Lord, how I wish for many more of those to follow.

Tonight we received a phone call that I was not ready for & has devastated me. Kayleigh's brain has started to swell which is not a positive direction for things to go. It sounds more like the beginning of the end. I think they actually used the words brain deterioration & liquefy. If I try to focus on those two words for too long I can actually feel my heart tearing. The doctors don't think that she has very long left. It could really just be days. Here I was living in this little bubble of safety. I thought we would bring our princess home, play with her, have family time, & then God would let us know in this magical moment that it was time to let our baby go to Heaven. I feel like I see the light but it is just a train heading right for me. I feel like time is running out & I don't know what to do.

My husband would describe me as strong & if he were being honest with you all he would through in control freak as well. (This is something that I am working on but that is for another day) What does a control freak do in a situation like this? I feel like my brain is in overload. I am a person who LOVES to sleep. I could stay up until 3am but then I want to sleep until 1pm. I feel like I don't want to sleep at all. My mind is always going & I can't make it stop. Even when I go to bed I feel like I am awake all night. Yet, I wake up rested.

I can't tell you the last time that I yawned. I have started to feel a little light headed the last few days. Adam is worried that I am just going to come crashing down. I am worried that he might be right. By the way, I am not drinking caffeine either. Just water. I want everything to be perfect for Kayleigh & I feel like even though I am not ready to let her go or even the idea of letting her go, I have to make plans.

I am sure that many people could help me with this but I feel like I have to do it. So, what happened tonight? I had a mini freak out in my head because I don't own a black dress! Who needs this? I don't even like to shop much less for this reason. Fortunately for my family who also hates to shop we were right next to a Dress Barn. I went in & found three black dresses that were decent. I tried them on & luckily one fit pretty good. I told Adam that I didn't want to look great & I didn't want to love it. I will never wear it again. I won't want to.

I never thought that I would see the day that my own babies could go home before me. I never visualized buying a dress for my daughter's funeral. I never imagined that I could feel this pain inside of me. This has been the hardest year of my entire life & the hardest moments aren't even here yet. I know that my gorgeous little girl will be safe in Heaven but I just can't imagine not holding her in my arms, feeling her against my skin, making her first sounds, & taking her first steps. I can't imagine her not coming home to see her perfect room. I can't handle the thoughts of what this is doing to my amazing husband. He loves her with everything in him. We are not just dealing with this pain individually. We share in everyone's pain. Our other children, our parents, our siblings, our friends, & all of you. Our hearts break over & over.

What keeps us going? Our faith. I have only been really close to God for a few years & I can't imagine how I would have handled this before then. Knowing that Kayleigh is going to a better place where we will all meet again gives us strength. Knowing that God gave me the most amazing husband in the world to pick me up when I am down, hold me, love me, & wipe away my tears.

Knowing that even though there will be many tough days for us & the kids, they will help us get through it. They actually made us laugh a few times tonight. If it weren't for them being home with us we both would have just closed up & stayed miserable & depressed. They will bring us joy & remind us everyday of the good things in life. Knowing that we have an unbelievable support system is indescribable. Thank you to all of you. Adam & I could NEVER express what you have done for us spiritually, financially, & emotionally. There are many days that we felt like we couldn't have made it without all of you.

I do not know what the next few days or weeks will bring for us. I am afraid. I am nervous every time my phone rings right now. Please continue to pray for us & have your friends & family pray for us. Your prayers have worked miracles in the past & I know they can do it again. We love you all & we feel terrible that you are hurting as well. Please know that we will all take care of each other & we will all get through this together. We may not "know" each other in the normal sense of the word but we will certainly all meet again one day. When you all meet Kayleigh she will look more amazing than she ever has. She won't have any pain, will be whole, & will welcome us all with open arms. How glorious will that be?

With Love,

Aimee


"Kayleigh, we love you with all of our hearts. You are such a blessing to us and we are so grateful to be your parents. Our faith and love is stronger because of time we shared with you.

We know how powerful our Lord is and how He can do anything He wants to do. I feel in my heart that He is deciding to bring you home with Him. Your body will be made new. Your brain, your heart, your lungs, your eyes, and your tummy will be healthier than you ever imagined. You will be so happier in your new home.

As we all prepare for eternity here on Earth, I want you to know that you have touched thousands of lives with your strength and determination. You are the strongest person we have ever known and we are so proud of you for fighting so hard. It is evident that Jesus has laid His hands on you and created a miracle in so many ways. His love is so great! We continue to pray for one more miracle.

We look in to your eyes, Kayleigh, and we cry because if you must go to heaven, we will miss you so much. We just wish you could share your story with millions, personally and help so many others with your own voice. We just wish you could stand with us in front of every single person and pour our hearts out together, holding hands, but we know you will be there looking down on us from heaven. We hope you are proud of us as we did everything we possibly could to save you when no one else believed you could be saved.

We love you so much."


423 comments:

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Anonymous said...

Aimee & Adam,
You are such brave amazing parents.My heart goes out to yall~ Like you said, Aimee, we don't "know" each other and yet I feel so much for your family. Praying for Sweet Little Kayleigh~

Ashli-Louisiana

THE SPIVEY"S said...

My heart is breaking for the two of you. I am in tears as I pray for mirale that God has in store for her. I have been following your story for about 5 or 6 months now and it is so amazing how I have watched Kayleigh grow. She is such a strong and amazing young girl. She is such an inspiration and I know that God has a plan for her that is special. I can not wait to meet her, whether it is here or at home in Heaven. I can't wait to tell her how special she is. My family and I will contine to pray for you and your family. We not only pray for Kayleigh's health but for your hearts to heal and for her to come home and have that wonderful family time. In God's name we pray...

The Spivey's in Lexington, South Carolina

The Leviners said...

Still praying for your precious baby girl each and every day.

Tina said...

Adam & Aimee,
Your video was wonderful, so loving. Our hearts break with yours of your latest news about Kayleigh's brain swelling. Thank you Aimee for sharing. I can't imagine how hard each day must be. I continue to pray for a miracle for your precious angel. Your courage and love for Our Lord is amazing.

Unknown said...

I can not imagine the pain that your family is feeling. Kayleigh is a beautiful little girl and I will keep her and your family in my thoughts and prayers.

Anonymous said...

You are amazing people. Your family is beautiful and I think about you all every day.

Jen said...

That was the most amazing and beautiful blog and video. Kaleigh is an angel who will never be forgotten. She has touched so many lives, as have you. Be strong and continue your faith. Many, many people are praying for you and hoping Kaleigh makes it home.

Anonymous said...

Aimee and Adam...you have touched our hearts, you have cried and prayed with us! Praying and asking God for strength for you and your family. God Bless Kayleigh!
New Braunfels, TX

Al's World said...

I am crying buckets right now. I have prayed and prayed and prayed for you all during this journey and still cannot believe that this is happening to you. What a blessing that God chose you to be her parents, to take care of her, love her and share her with millions before He wanted her home with Him. I know this is not what you had planned, not what you invisioned when you discovered that you were pregnant, but this is what God had planned, to share her for a while and then bring her home, strong, healthy and completely healed. Love you both so much and pray for you everyday!

haley said...

As a mother of 3 my heart goes out to you.
I am praying that God would answer all of your prayers.
I pray that God would bless you both for your hope and faith that you have found in him.
I pray for peace and strenth for you and your family today.
God bless!

Anonymous said...

I recently just started following your blog,but you daughter has touched my heart in the same way as god touched my heart as a child when I became a christian.

Kayleigh is...PERFECT in every way. She is truly an angel here on earth. All who have been touched by Kayleigh's story are truly blessed. I have been praying for a miracle for Kayleigh and asking the lord and the blessed mother Mary to wrap their loving arms around little kayleigh and hold her close.

May the peace of the Lord be with you always.

Lexie Loo, Lily, Liam & Dylan Too said...

Praying for Kayleigh and your family. My heart is breaking for your family.

Rachel Dominguez said...

My heart is just breaking for you all., especially Kayleigh. I don't even know the words to say to comfort you during this difficult time, just know that from the beginning, I have been praying for you and Kayleigh and the kids. I will NEVER stop praying!
I feel like you guys are part of me, my heart, my life. I love Kayleigh as if she was my own. Isn't that strange to love someone you have never met? But that is God in my heart and soul.

My heart is a just a mess...I can not even imagine yours.

My thoughts and Prayers go out to you every day...please know that you are not alone!

Love,

Rachel

Kayleigh....If you can hear this when your Mommy and Daddy read this to you...please know that I care very deeply for you and love you from afar. You are a true spirit of God with the most AMAZING strenght I have ever witnessed. May God Bless You Forever baby girl.

Rachel

Anonymous said...

I am so sorry for the pain you have experienced this past year. Can I remind you that our medical system is really good at understanding what happens with the physical body but has no clue about the spirit and what goes on at a spiritual level - just because Kayleigh's physical brain no longer processes emotions does not mean her spirit doesn't - keep loving her up because it matters. Kayleigh still exists and you matter to her. May God walk closely with the five of you . . .

Anonymous said...

There are times like these when one must let go; times when loving someone means letting them go. My infant son was in the NICU six weeks - six weeks of prodding and poking and medication and more. Then we knew that the most love we could show him was to let him go.

Let your daughter go. It's time.

Anonymous said...

I'm so sorry to hear about your little Kayleigh - I was so praying that things would go well.
Wear a flower dress?
She's going to a wonnerful place.
But I'm sooooo sorry that you won't be with her anymore.
I lost my hubby in 1982 ... still want to see him SOON!
God bless you and I hope and pray you have the strength to get thru this MOST difficult time.
You were the most precious carers of your little Kayleigh and I want you to know that she LOVES you and appreciates you SOOO MUCH!!
xoxoxo ((((HUGS))))

Jessica Kirkland said...

What a miracle little Kayleigh is and will always be. Prayers from our family to yours as you deal with this tough circumstance. But, tonight I will be praying for healing and a miracle for baby Kayleigh. Until God chooses otherwise, our family will be praying for her complete and total recovery. And for both of you that peace will flood your hearts and minds.

Anonymous said...

I was just wondering after all the struggles with Kayleigh, are you guys going to try again?

snekcip said...

Aimee I'm also "new" to your blog. I don't think there are any "right words" in the human language to comfort a parent who suffer the loss of a child. I really don't know if "loss" is a sufficient word to describe beautiful Kayleigh. We ALL have GAINED so much following her journey, that "loss" doesn't seem right.

Aimee, take many pictures, get a sculpture of her hands/feet. I have read where parent's who's ANGELS who have gained their wings was glad that they had this memory with them. "Forgetting" was each one personal fear and this "physical" memory of their angels soothes their heart.

This is a path NO PARENT wish to travel, or a "club" no parents wants to join. God has chosen You and Adam to take care of HIS most precious gift. I found this poem befitting, I hope and pray it brings you comfort.

I'll Lend You A Child
by Edgar Guest

"I'll lend you for a little time a child of mine," He said.
For you to love - while she lives
And mourn for when she's dead.

It may be six or seven years
Or twenty-two or three,
But will you, till I call her back,
Take care or her for Me?

She'll bring her smiles to gladden you,
And should this stay be brief
You'll have her lovely memories as solace for your grief.

I cannot promise she will stay,
Since all from earth return,
But there are lessons taught down there
I want this child to learn.

I've looked this world over
In search for teachers true,
And from the throngs that crowd
Life's lanes, I have selected you.

Now will you give her all your love,
Nor count the labor vain,
Nor hate Me when I come to call to
Take her back again?"

I fancied that I heard them say,
"Dear Lord, Thy will be done,
For all the joy Thy child shall bring, the risk of grief we'll run.

We'll shelter her with tenderness,
We'll love her while we may,
And for the happiness we've known
Forever grateful stay.

But should the angels call for her
Much sooner than we've planned,
We'll brave the bitter grief that come
And try to understand."


Lifting you in prayer

Sharon said...

My heart goes out to your family.

Having lost a daughter four years ago, I, unfortunately, can imagine your pain.
I still cry sometimes, but, not everyday anymore. The pain will lessen but not go away. Believe it or not, there will come a time when you will get through a day without tears.
Just hold on tight to your children and each other until then.

TheRagan3 said...

While I have never walked in your shoes... I can identify with the raw emotions you are feeling for your sweet girl. I lost my son at 1 month old after open heart surgery. Being a preemie too (2lbs 7 oz - 28wks) he was so very small when the surgery happened and he just couldn't bounce back. It was the hardest thing that my hubby and I have ever had to do in our lives - hand Moses back to our Father. I felt like my heart was being ripped out -- it was ONLY because of our faith in Jesus and holding on to the truth that even though I didn't understand, HE was working things out for Moses' best and for my best. The peace and grace of God took a hold of our hearts and comforted us like no one else could.

This is what I pray for you and your family tonight. I pray that you will be able to hold her in a rocking chair in her room at home. I pray that God will grant you HIS peace in the coming times.

God Bless
Erinn
www.moses-mackay-ragan.memory-of.com

TheRagan3 said...

While I have never walked in your shoes... I can identify with the raw emotions you are feeling for your sweet girl. I lost my son at 1 month old after open heart surgery. Being a preemie too (2lbs 7 oz - 28wks) he was so very small when the surgery happened and he just couldn't bounce back. It was the hardest thing that my hubby and I have ever had to do in our lives - hand Moses back to our Father. I felt like my heart was being ripped out -- it was ONLY because of our faith in Jesus and holding on to the truth that even though I didn't understand, HE was working things out for Moses' best and for my best. The peace and grace of God took a hold of our hearts and comforted us like no one else could.

This is what I pray for you and your family tonight. I pray that you will be able to hold her in a rocking chair in her room at home. I pray that God will grant you HIS peace in the coming times.

God Bless
Erinn
www.moses-mackay-ragan.memory-of.com

Some Dude said...

I am sorry to hear about your painful situation. I will pray for you.

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