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?
"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."