Our ASLD Angel: Blessings In Disguise

In December, God blessed us with an incredible opportunity to share Hayden’s story in front of Doctor’s, Medical students, and health care providers. Four times a year, the University Medical Center does a Schwartz round. Due to Hayden’s story and another three sweet miracle children, the story in December was based on HOPE. We had the best time sharing Hayden’s story. I held back tears as I heard one of Hayden’s Doctors say, “There have been many times when I have seen a recovery much beyond expectations,” Boyte said. “That was the case with these children. Even with the child who eventually passed away, he lived longer than expected.” I remember looking at Brent as he said this to find tears in his eyes. You see Brent and I put all our faith and hope in the Doctors at Batson to help us give Hayden the best quality of life possible. They would often make comments like this but it was OKAY because we had HOPE for HAYDEN. I questioned Brent this weekend about this comment. He said Lauren; I knew last September that it was bad, real bad, a lot worse than we told the public. I guess this is called naïve. He said just by the looks on the Doctor’s faces, I knew it was something they had never seen before. We discussed with our amazing doctors from the beginning that we wanted to focus on quality of life instead of the length of life. This is one of the hardest decisions that we have ever made. I often question this decision. We slightly altered this decision in Hayden’s last few minutes of life as we chose a CPAP which is an external ventilator. We were against the ventilator until it was our last HOPE. Luckily, Hayden was ready to go to Heaven. We never had to make any decisions because he passed away peacefully while on an external ventilator. This usually does not happen unless the patient is truly ready to see the Golden Gates of Heaven. We prayed for no regrets and no pain. God blessed us with these two things during his last moments. In the Schwartz round, I listened to the first two stories. Both of which were living miracles. I thank GOD that these children are miracle children. I must admit though it made me nervous to share Hayden’s story. I knew that it was going to shock the audience. The reason was the word HOPE was not going to be because our child was still living but because our child is at peace in Heaven. I briefly discussed Hayden’s disease. The rareness of his disease was three cases in the USA and less than 50 Worldwide. I would have never been able to share his story without Hayden on our side. I am so proud of Hayden for giving us the strength and courage to succeed in this opportunity. Facing reality is often hard to deal with. This weekend was filled with many emotions. I spent some time cleaning Hayden’s room. He has the sweetest little room. He has hundreds of beautiful smocked and appliqued outfits in every drawer in his room. I just cannot make myself put them away. I did gather items together that I would love to place in a scrap book. I also placed his most special items in a new chest. I will not lie. I was shedding many tears while doing this. I also found myself smiling at Brent. I am so thankful to look into his chest. Hayden has a few items that any high school boy would dream of having. You see he was a mighty special little boy. He touched so many lives. More importantly, he changed his mommy and daddy’s life.

Last night, Brent and I watched the Huckabee show. The guest speaker was Jim and Jill Kelly. We have tried holding onto their words of wisdom, advice, and books. They spoke about losing their son Hunter. It was unreal. Everything that they said matched what we say. We are living a different life. We are living a life that only people that have lost a child would understand. As Jill Kelly said, “I learned to let people judge me and talk about me, the truth is we are the ones that are LIVING the LOSS of a CHILD.” People that judge our good or bad days have no clue. They also said that the only way you can get through the loss of a child is through your Faith in Christ. Jim said, “Without your spouse, family, and friends backing you with a Christian relationship your marriage will not last.” The emotions of losing a child are unbearable. We must always put into consideration that our anger, bad days, and tears are understandable. I thank God each day for placing these people into the lives of parents like us. Reality is tough. Reality is heartbreaking. We WILL live a life like Jim and Jill Kelly. We WILL continue to pray about Hayden. We WILL continue to ask God to help us with the Good and Bad Days. We WILL lean on God to get us through this emotional rollercoaster. We WILL always continue to talk about Hayden. We WILL continue to have HOPE for other families. We WILL continue to be around positive people only. We WILL do all of these things for our sweet Hayden. One of the best things that Brent and I did after Hayden passed away was stick to the positive. Many people do not want to hear us vent or cry. We would have never made it through our journey without our friends that kept us busy. I am so THANKFUL that they still want to do things in his honor. We will survive this rollercoaster because of our LOVE for Christ and a Positive Support Team.

Hayden has opened an abundance amount of doors for our family. We have been given the ability to help other families. We have been given the ability to share his story. We have given the word HOPE a new meaning. We are going to hold onto HOPE for the rest of our lives. I have full FAITH that God is going to bless Brent and me beyond unexplainable measures. He is going to give us a life worth living because of our love for him. I use to question, “Why would God do this to us?” I am so ashamed that I would have ever said this. What made me think that we were better than anyone else? The truth is God changed our lives by blessing us with an angel. We will continue to be thankful for this blessing. As I reflect back on the past 5 months, I realize that we have been very lonely and bored. We have free time. I HATE free time. I loved being a busy mommy to an amazing baby boy. Selfishly, I often wish that I would have had other children first so I would have something to hold onto and be thankful for. Instead, I have to worry about if I will ever be a mom to an Earth Child again. This has probably been my biggest emotion. We must leave these questions in God’s hands. I do believe whether Brent and I become Earth Parents again or not, God will bless us with huge things in our future. Infact, he blessed us with Miracles in our PAST. We are moving forward. We BOTH see Hayden signs daily: Sun, rain, rainbows, color yellow, flowers, beach, 11:11, and dimes. We believe in miracles. We are living each day like it is our last. We are at peace because we will see Hayden again. We will spend eternity with him. I am so thankful God placed Brent in my life. Without Brent, I would have never had Hayden. Without Hayden, Brent and I would have not changed for the better. We would not understand the true meaning of being thankful. We are so thankful for each person that has given us a hug, a card, a text, and a smile during the last five months. Thank you for not forgetting us in your prayers. I hope you truly realize how appreciative we are for each of you. We would not have made it without the love and encouragement.

We were/are a TEAM!