“Time heals” they say…I’m not sure I would be able to give these words of advice to another Momma in my shoes. These past couple weeks have been pretty rough.
A couple weeks ago, Alayna and I were in a home where there are normally two dogs. She asked me a couple times where the other doggie was, but thankfully she moved on to the next thing before I could respond. While I was buckling her into her car seat to leave she said to me, “Mommy, where did the doggies friend go?”
I hesitated as I realized now that I was face to face with her, I had to answer. “Hunny, the doggie died. She is in Heaven with Jesus now.”
With a big smile she says to me, “Carter is in Heaven too! The doctors need to hurry up and fix him so he can come home and play with me.”
Tears started rolling down my cheeks. “Baby girl, Carter died too. The doctors couldn’t fix him, he has to stay in Heaven and we won’t be able to see him again until Jesus tells us its our turn to go to Heaven too.”
Her eyes got huge and her smile disappeared. “….Mommy….Carter’s heart stopped??”
My heart fell as far down as it could go and I bawled right there. I realized in that moment, my little girl truly understood what happened to her brother. I felt like it was April 29th all over again. I never use the word “died” when it comes to Carter or any other person that has passed away. Its a rough word and its a word that I truly believe doesn’t describe Carter. Yes, he passed away, but he is very much alive in Heaven now.
Recently another little baby with a Mitochondrial Disease passed away. I was following each day what was going on as the situation was so, so similar to Carter. It was heartbreaking and I really struggled to read the daily posts and see pictures that brought back so many very similar images of Carter.
One day there was talk of coming up with a discharge plan for this child. I’m going to be completely honest. I was heartbroken. I was extremely jealous. In my head that morning I was thinking, “Why God, why are you saving this child when Carter was in this same situation and you took him!” I am definitely not proud of this at all. I spent all morning at work praying and asking God to forgive me, to take away those thoughts and replace them with peace. Thankfully within a matter of a couple hours, He did just that.
The next morning I was checking my newsfeed before work, that is when I saw that this child had passed away. I cried All Day Long. I couldn’t stop the tears. At first I felt extremely guilty about the thoughts I had the day before. Then it was just a huge heartache where all I could think of was going through this same situation this time last year. How now there is ANOTHER family going through this path because of Mitochondrial Disorders. It hurt, and still hurts so, so bad.
I was talking with a friend last week and she said to me “I love how you’re so honest about your feelings. I don’t think anyone else would ever admit to thinking those things even though we ALL absolutely would have those same thoughts. A lot of people look up to you and you should know that having the strength to get up out of bed every morning is a huge accomplishment you should celebrate.” I am so thankful for those words, especially coming from this friend. Even though I’m still extremely upset with myself for allowing these thoughts to even come into my head, it was encouraging to hear that I wasn’t a terrible person for it.
When we were on our way home from the hospital after Carter passed, some very dear friends came to our house before we got here. They got things dusted, cleaned off and smelling good after it being locked up for another 3 weeks. One of the biggest things they did, was went through our whole house and got all of Carter’s things and put them into his bedroom so we didn’t see them just sitting there when we walked in for the first time without him. This was so, so helpful.
A couple days ago I decided to try and clean his bedroom for the first time since then. Normally we keep his bedroom door shut but Alayna has discovered all his toys in there, so she goes in often now to play. I came across his acid reflux pillow that he spent quite a bit of time in while needing to be connected to his feeding tube. The baby scale with the piece of paper and pen next to it that I had been recording his weight every single day to make sure he was always gaining and not loosing. There was a suction tube on his changing table that I had been using the morning I took him to the hospital. Several sitting toys that we worked hard on every day for him to have the strength to play in. Several pacifiers that we were desperately trying to get him to suck on in hopes of being to eat by mouth again. Handmade blankets that were given to him at the hospital. Then there was the clear hospital patient bag that they put all the belongings in that he came with, his outfit, socks, and stuffed animals he was given on Easter last year. The worst thing that broke my heart the most…a little baseball shoe. It looked very similar to the Yankees baseball shoes he wore when we saw him for the very last time.
For the last couple weeks I feel like God has given me the words Surrender and Trust. I feel like these are areas in my life that he wants me to work on…my biggest struggles and weaknesses.
I don’t think I would of ever considered myself a “control freak”. I’m pretty good about being easy going, if plans change that’s okay with me, I just follow along. But areas in my life like health and situations that I CAN’T control, really get to me. I feel so helpless and I worry/fear like there is no tomorrow.
God has really been working on my heart to surrender my whole life to him completely. To give him all these situations and to trust him fully with them. To stop taking them back into my own hands when I start to fear again, when I think I can control them, when really I’m being to impatient to wait on His perfect plan.
The day that the other baby passed away, while I was praying I asked God to speak to me and that when He did, that I would trust that it was Him and not question it. I was driving home later that day. I had so many tears in my eyes and I was once again yelling at God. I said, ” Why God, why did you take Carter, mentioned another child and now this child?! How many more children are you going to take of Mitochondrial Disease?! Why aren’t you stepping in and doing something?!”
Literally, without missing a beat, like someone was sitting in the passenger seat next to me and talking back, the lyrics to the song playing said:
“So, I shook my fist at Heaven
Said, “God, why don’t You do something?”
He said, “I did, I created you”
I cried the whole way home. I still don’t know what it is that He wants me to do, I’m still waiting for Him to reveal that to me. In the mean time, it makes me really want to focus on two things.
The first is Carter’s Mitochondrial Disease Research Fund. I want to continue to raise money in hopes of finding a cure for these terrible diseases that take more children’s lives than childhood cancer. These diseases that are trying to be proved are linked to more terrible yet very common health issues in children AND adults.
The second is Carter’s Kingdom Builder list. I can remember when Carter was discharged from the hospital after his first admission. A good friend came over to the house and was crying uncontrollably over Carter since we had just gotten a pre-diagnosis and knew it wasn’t good. She began praying over him and she said ” God if your not going to heal him now, then please just come back and take us all home.”
At first I loved that. After she left, I got this huge rush of panic over me. I almost called her and jokingly said ” Okay lets forget the last part about taking us all home and just pray that he gets healed now.” I realized in that moment that I have way too many people I need to be saved before He can come back for us and that’s scary!
Easter is next week. Though it will be rough on our family as we have flashbacks of last year Easter where we spent it at the hospital and now this year without Carter with us on another holiday, I need to focus on the meaning of the day. God sent His only son to be crucified on a cross for us and to save us from our sins. Then the resurrection came, the day we all know as Easter Sunday when Jesus rose from the dead three days later. He gave the ultimate gift for us, His life, so that we could spend an eternity in Heaven with him.
My hope and prayer is that you all can come to know Him personally and accept Him as your savior as well. Don’t go through life alone, when you have the Master who created everything, every tiny detail, at your disposal. He is there and willing to help you, all you need to do is ask Him.
For if you confess with your mouth that Jesus is Lord, and believe in your heart that God raised Him from the dead, than you shall be saved. Romans 10:9
Blessings and Happy Easter ❤
Brittany Lackey
Carter Lackey's Testimony 