This is my story

Music is my love language. The lyrics of certain songs speak to me and when I sing (although not well-in fact worse since one of my vocal cords became paralyzed), I’m not just singing meaningless words. Songs are so much more than just good music to listen to. My Story has become one of my favorites recently. Especially the line “oh to tell you my story is to tell of Him,” not that my story is some amazing story of everything going great or having what I always dreamed of. In fact my story is far from what I would have ever asked for or even wanted. But when I look back over the past several years I can see God’s hand at work even in the times when I couldn’t get up off the floor. This post is going to be a little longer than most, but this is the start of my story and what God has done and continues to do for me.

If I told you my story
You would hear Hope that wouldn’t let go
And if I told you my story
You would hear Love that never gave up
And if I told you my story
You would hear Life, but it wasn’t mine

If I should speak then let it be
Of the grace that is greater than all my sin
Of when justice was served and where mercy wins
Of the kindness of Jesus that draws me in
Oh to tell you my story is to tell of Him” My Story by Big Daddy Weave

On March 10, 2015 I gave birth to the most perfect baby girl, Addalyn Grace, weighing in at 4lbs 5oz and 18 inches long, unfortunately, the doctors didn’t see how perfectly God formed her. They pointed out every “flaw,” but all I saw was my beautiful girl. They sent us home on hospice when she was 3 days old with a diagnosis of Trisomy 18 and a prognosis of a month at the most. Our first night at home was terrifying, to say the least. I didn’t know how it was going to happen; if she would die slowly or if we would wake up to her lifeless body. The nurse that came out our first night helped save our girl. She told us to join Facebook groups and find other families to talk to who had children with Trisomy 18. The way the doctors were talking I didn’t even know there were other people out there with children living. Once I found other families and connected on Facebook I saw how much hope there was. I immediately began my quest to do everything I could to fight watching my baby girl die. I was surprised how many doctors would not even see her or consider surgery for her because they felt it wasn’t worth it since she would die anyway. Once we got an amazing team of doctors together and had her heart repaired at 6 months she began thriving and really growing. We enjoyed 26 months with our sweet girl and during that time I grew so much closer to God than I had ever been and I learned what unconditional love really is. I constantly prayed for my girl and leaned on the truth in scripture that told me God’s plans are not meant to harm me and that He is with me all the time. During her life we spent many nights in the hospital with respiratory illnesses that often landed her in the PICU for several days or longer. She had multiple surgeries, one to repair her heart, one for a g button and a cleft lip repair, another cleft lip repair, her tonsils removed, and the last was to repair her cleft palate. She did so well with all her surgeries, except the last one. Her doctors thought she would rock it as well, just like she always did. The day before her surgery I was praying for her and the upcoming surgery. I prayed “God, I know you love Addy more than I ever could and that you are good. I trust whatever plans you have for her and give her over to you. If for any reason I shouldn’t take her in for her surgery, please make it clear. Please help put my mind at ease and give me the wisdom to know what’s best for her. Amen”

Two days after her cleft palate repair our world started to turn upside down. I watched as the doctors swarmed her PICU room and started doing everything they could for her. I fell to the floor as I watched them do CPR on her and deep inside knew it was the beginning of the end of her time here with us. They asked if we wanted to try and do ECMO (a bypass for her heart and lungs), and of course we said yes, but she required CPR two more times before they could do it and started having internal bleeding. The bypass was no longer going to be able to do enough for her to stay with us, so through lots of tears we said they could stop.

They brought a rocking chair next to her bed side for me to hold her until she was gone from this world. I held her limp body apologizing over and over for trying too hard to “fix” her when she was perfect. I no longer had words for God other than “please,” hoping He would miraculously bring her back and that I would wake up from the nightmare I was living in. It had been three days since she had her surgery. The one she was supposed to rock and come home from. Little did I know her coming home wasn’t to our house. It was to her eternal home in heaven.

I struggled, as anyone does when their child dies. I wanted to be with her and didn’t care if I kept living or not. Anytime I started praying out of habit I would stop myself and tell God I would not pray to him. When I did pray it was angry prayers to start with. I would tell God He owed me and better not let anything bad happen again. I don’t recommend doing that. It’s funny how much anger can change your thinking. I had to go back to the word and remind myself of all the promises of God that I always knew to be true and just tell them to myself over and over. My prayers slowly improved.

A little back story…before Addy died we were planning to foster to adopt. We had done all the trainings and just needed the last step of a home study done. We were supposed to call when we got home from the hospital to set it up. Obviously, that was put on hold. We had a baby room all ready (we were going to take someone younger than Addy when fostering) and it was so hard walking by not only Addy’s empty room but the empty baby room as well. It can time that we needed to talk about what our next step was going to be. We contacted to fostering agency and let them know what happened and that we’d call when we were ready again. But I had a nagging feeling that I still wanted a baby. We decided to try fertility treatments (my husband is a carrier for Trisomy 18 and we didn’t want to risk another heart break of burying a child again), after multiple attempts we discovered it wasn’t going to be possible to conceive. We decided to wait a year and start the process of adoption without fostering. I was terrified at the thought of fostering a child and having to give them back and being left with an empty house again. We had amazing support from friends and family (and some strangers) in raising the funds needed. We did all the trainings and had our home study done. I was already dreading the question that everyone asked “how long will the wait be?” We had no idea how long it would be and I was a little scared we wouldn’t be picked. We made a photo book of our story and I didn’t know if having a child that died would feel like too much for someone dealing with their own issues to pick us.

It was 3 months after our home study was finalized that we received an email that a baby boy had been born and they asked if we wanted our photo book shown. Of course we said yes, but this was the second time we had received an email like this about a baby already born and we had no idea how many people were in front of us on the list to have theirs shown also. Our agency told us up front they always show books of those waiting the longest first. A day had passed since we said yes and I figured she had picked someone else, but the following day we received a call that the birth parents would like to meet us that day (that in itself is a long story too). We packed and got there as quick as we could. It felt like an eternity before we were even able to see him. We visited with the birth parents after they signed their rights away and told them the name we chose for him, which happened to be his birth dad’s dad’s name. I don’t think it was any coincidence, I also don’t think the name was even in our hands. We agreed on a name within a few hours which we couldn’t decide for Addy for a couple months. It was another reminder that God had a hand in it and we were meant to be his parents all along. We asked them what made them choose us and the birth mom said it was because Addy had died. She had seen our photo book and was trying to decide when her nurse told her that she had lost a child and adopted after and adopting helped her move forward in her grief. It was then she knew it had to be us.

After visiting for a couple hours we finally got to go up and meet our son. It was the strangest thing ever. To walk into a hospital not being pregnant and have a child. As soon as I saw him I was in love. It was as if I always knew him and he belonged with us. The love I felt for him as soon as I saw him felt no different than when I saw Addy for the first time. I wasn’t expecting to feel that way immediately. I honestly didn’t know what I expected. We got to bring him home the next day after all test results came back that he was heathy. His birth mom smoke and drank while pregnant but it currently isn’t having any effects on his health. We are prepared to do whatever he needs if anything comes up in the future.

Once we were home and settled in we started thinking through all the things that were more than coincidences and showed how he was meant to be in our family. He was conceived shortly after we were told a pregnancy wasn’t going to happen for us, and also right around what would have been Addalyn’s 3rd birthday. I was dreading another Christmas without Addy but decided I needed to decorate anyway (We skipped Christmas the first one without her) so that when we did have a child it wouldn’t be as hard to do again. He came home 9 days before Christmas and I didn’t have to do last minute decorations for his first Christmas. The name thing is the biggest one that’s hard to get past. It’s not like it’s a common name for us to have picked his birth grandfather’s name for his name. I can’t even count how many times I’ve been told he looks just like me or his dad. It’s funny since he has no genetics in common with us but I think he looks just like his dad too. And he loves to talk just like his daddy does.

We went a year and a half after Addalyn died before our son joined our family and during that time I didn’t think I’d ever feel joy again until heaven. I know our joy shouldn’t come from our circumstances, but it’s so hard not to be effected by what’s going on in your life. I asked God over and over to let me see something good that wouldn’t have happened if Addy was still here. I desperately wanted to see the beauty from the ashes. The song that constantly ran through my head during those days was “there may be pain in the night but joy comes in the morning.” I still won’t say she died for a reason, but I believe God is working on redeeming and bringing glory to His name through her death. I haven’t felt like I’ve done a great job giving God the glory for all he has done for me, but I owe him everything. During the times I was curled up on the floor crying he has been right there with me, when the tears flow and won’t stop he is catching them and records each one, he intercedes for me with groaning too deep for words when I cannot pray. He also has given me a crown of beauty for ashes and has allowed me to see goodness in the land of the living. I praise the Lord for giving me more time than was expected with Addalyn. I praise him for being with me and for his reckless love that never gave up on me. I praise him for my baby boy who has brought joy back into my life. And I praise him for my husband who is always there with me through all the ups and downs of life. God does not change, He is good whether I feel it or not. My story is a story about God’s redeeming love and so much more. I can’t wait to see what else he has in store for us.

7 thoughts on “This is my story”

  1. Reblogged this on Notes and commented:
    I loved your story and that beautiful song you quoted. Addy is where we are all headed. How lucky were you to have her alive (even for a short period of time). And you have a way of telling a story via written words. I look forward to reading more on your blog. Love and hugs!

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  2. My husband and I lost our sweet Madison Adelyn at 6 months of age, to trisomy18. She was such a fighter and we just knew she would pull through her heart surgery just as she had so many other things in her short, precious life. She stayed in the hospital for 2 weeks and came home. She was doing as expected and we were just trying to get back in our routine. It was Saturday morning a week after we returned home and my husband decided to go to work for a bit. Madi was super fussy that morning and pretty much inconsolable. Once I finally got her settled down, and I saw that she was okay, I went back to sleep. I awoke an hour and a half later to find that Jesus had taken her home. It’s been 10 months since she passed and some days are better than others. Your story has been an encouragement to read. Thank you. The promise of seeing her again is the only thing I have to hold on to, and I know that God is still in control.

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  3. Erin, your story is painful AND joyful. Addy brought joy to so many and the pain of her joining Jesus too early has brought sharp pain to so many. I am loving your smiles lately!
    There is a song that I am listening to over and over…the lyrics have comforted me during some recent difficult days. It’s “Another in the Fire” by Hillsong United.
    Love to you, JD & that goodlookin’ baby boy!💖
    Suzy

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