Fear is a liar

I often wonder what kind of mom I’d be now if Addalyn was still here. If I had not experienced that horrible night when I held her for the last time on earth, would I have the same worries and fears that I have now? Would I have been the mom who puts a pulse-ox monitor on her healthy baby? Would I lie awake as often as I do just watching him sleep on the video monitor? Would I worry that every sickness will result in a hospital stay? I know every mom worries about her children. You worry about almost every decision you make for your child and wonder if it was the right one. Some may even share my more recent fear-is my son going to live until his first birthday? There’s no rational reason to think he wouldn’t, but after you burry a child, death becomes more of a reality.

I can reference the scripture that talks about not worrying or about having faith, but that doesn’t take all worries away. The Bible isn’t a magic pill that suddenly makes you not think about what could go wrong in life. Obviously, it’s not healthy to dwell on it, but you can’t always stop a thought from popping in your head and the instantaneous stomach ache that ensues.

I’ve learned over the past several years that faith doesn’t make life easy, the Bible doesn’t say struggles will vanish, and God doesn’t expect me to do everything perfectly. My faith helps me realize that no matter how many things go “wrong” in my life (according to me), God can redeem it and bring beauty from ashes. The Bible tells me I’m not alone. Others have gone before me and have suffered in similar and worse ways (need I mention Job?) and are an example of continuing to trust God through the worst parts. God doesn’t expect me to have all the answers and to know exactly how to control every thought that enters my mind. Instead, He’s by my side picking me up off the floor and redirecting me. I do need to recognize what causes me to go there in my mind and make changes to try and stop it, even though I won’t always be successful. For me, keeping it bottled up inside allows fear to have its grip on me. So instead of continuing to walk around with the fear of my son dying, I’m sharing my fear and I’m telling fear he is a liar. And since songs are my love language, I’ll end with part of the lyrics to “Fear is a Liar” by Zach Williams.

Fear, he is a liar
He will take your breath
Stop you in your steps
Fear he is a liar
He will rob your rest
Steal your happiness
Cast your fear in the fire
‘Cause fear he is a liar

If you need me, I’ll be busy on Pinterest planning my 8 month old’s first birthday party…it will be amazing, just like Addy’s parties always were!

Back to school

It’s that time of year again, when all the first day of school pictures start showing up in your news feed. All I think about each time I see them is how I should be getting ready to send Addalyn to her second year of preschool. I should be buying her new school clothes and supplies. I should be counting down the days left of summer with my baby girl until she goes back to school. Instead, we took her some new flowers and a new pin wheel to put on her grave.

This is one of those things in life that doesn’t get easier with time. You never get over outliving your child. I’ve learned to live with the pain and push it aside when I need to get things done, but it’s never gone. Time keeps going and so must I. Fewer days send me to the floor but I also haven’t figured out all the things that will send me there. I recently discovered her favorite show (Maya the Bee) is no longer on Netflix. I wanted that familiar sound and I couldn’t have it. That wasn’t one I was expecting to be so hard, but it was. Sometimes it can be the little things that hurt the most. I am so thankful for our baby boy and all of his noises that fill our house, but I still deeply miss her sounds that once filled it. I even miss the sound of her feeding pump (which if you are familiar with-you’d never think you’d miss that sound).

The day she left us here, our lives were forever changed. All the hopes and dreams we had for her went as quickly as she did. Life is so short and fragile. I pray I always remember how precious the time is that I have with everyone I love and never take it for granted.

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.

Broken Vase

I started a new book, “Mended,” in which the author recommended throwing a piece of pottery on the ground and then glue it back together. It seemed a little counterproductive but she said it made her feel better, so I gave it a try. After your child dies you’ll try almost anything that might help you feel better. My experience, unfortunately, was not the same as hers. It never is. She had a child die as well but no two losses are ever the same. You might share some of the same emotions and you do have a common bond with others who lost a child as well, but you can’t compare or know what the other is feeling or what will help or hurt.

I thought out my plan for breaking and putting back together my little vase. I put it in a ziplock to contain the pieces (which didn’t work) and went outside, ready to feel better after this little project. As I was outside standing there with this case in my hands I suddenly developed a strong attachment to it. I didn’t want to break it. It’s not like it was some important decorative piece, it’s been moved to various places to fill a space when needed, and I don’t even remember where exactly it came from, but when it came time to throw it on the ground all I wanted to do was hold on to it. I questioned why I would break a perfectly good little vase, but after a couple minutes I convinced myself to throw it down.

I watched as the pieces of the vase flew everywhere with tears pouring down my face (ziplock doesn’t make as sturdy of a bag as I anticipated). The majority of them stayed in the same general area but others flew over 5 ft away. It felt as if I was the one thrown on the ground and broken again. As I got down on the ground and began collecting all the pieces it felt as if I was trying to pick up all the pieces of my life. I felt a little frantic since it didn’t appear all the pieces were there. After several minutes I decided to just go back in with what I had and to come back out later if I needed to find more.

I plugged in the hot glue gun and just stared at the pieces, not knowing where to start. I decided to start with the pieces that still resembled pieces of a vase. The bigger pieces. As I was gluing pieces together, I was supposed to pray, but I didn’t know what to say. Instead I listened to a song, the same song over and over again and I let it become my prayer. I’ve listened to it many times before but this time I really paid attention to the lyrics (below) and cried as I put the pieces back together as best I could.

You’re shattered
Like you’ve never been before
The life you knew
In a thousand pieces on the floor
And words fall short in times like these
When this world drives you to your knees
You think you’re never gonna get back
To the you that used to be
Beginning
Just let that word wash over you
It’s alright now
Love’s healing hands have pulled you through
So get back up, take step one
Leave the darkness, feel the sun
‘Cause your story’s far from over
And your journey’s just begun
Let every heartbreak
And every scar
Be a picture that reminds you
Who has carried you this far
‘Cause love sees farther than you ever could
In this moment heaven’s working
Everything for your good
Chorus:
Tell your heart to beat again
Close your eyes and breathe it in
Let the shadows fall away
Step into the light of grace
Yesterday’s a closing door
You don’t live there anymore
Say goodbye to where you’ve been
And tell your heart to beat again
(Tell Your Heart to Beat Again by Danny Gokey)
As I got to the place on the vase that received the impact of being thrown on the ground I realized there was a piece missing. I went back outside looking for it but still haven’t found it. I find myself scanning the area every time I go outside still. I couldn’t leave a big hole in it though, so I used the pieces I had to patch it. They were the pieces that belonged on the inside of the vase, but that wasn’t going to happen anyway.
As I prayed and cried my way through putting it back together I realized I am the broken vase and there were going to be missing pieces that just couldn’t be put back, as much I was wanted them to. The night I was shattered to pieces (May 21, 2017) I had to leave the hospital with a piece of me missing, lying lifeless on the hospital bed. The vase is no longer as strong as it used to be. I definitely wouldn’t try to put anything in it. I have never been one to cry but since Addalyn left me here tears fall frequently and sometimes it’s hard to stop once I start. It’s like the area of the vase where the pieces that should have been on the inside are now on the outside. It’s a delicate area, even with the tons of glue that was used. The glue that has been putting me back together slowly is my relationship with God. As He continues to put me back together I’m not going to be the same as I was before. Every crack is a part of my journey and every glue-seam is God holding me together and reshaping me. Those seams are also what can allow light to shine through them.
My vase still resembles a vase but it’s lopsided and can’t be used for the same purposes as it could before. It’s purpose now, as it sits on my nightstand, is a painful reminder that God isn’t finished with me yet. The night I was shattered hurt Him too, and even with a big piece of me missing I can still serve a purpose and let Christ shine through me. I still think about that missing piece and will probably continue looking for it each time I go outside, but it won’t consume me. Even though this was a great reminder of who I am, it didn’t make me feel better. I am broken and will continue to be. If you glance at me you might not see it. I’ve gotten better at pasting on a smile when I don’t feel like it. I’m not the same person I once was who could easily shrug off what someone says that hurts. Words mean so much more than they ever have. Time is precious. I don’t just go because I’m invited anymore. I laugh through the heartache because when life sucks sometimes you just have to laugh about it. I sometimes have to put on a serious face to get through something that ultimately makes me want to break down and cry-even though I cry a lot I hold back even more. I don’t even recognize myself anymore. I wish I had a life that let me fade into the background and never get noticed. I don’t want to be living a life where others know what my deepest pain is. But, since I’m here, I’ll let God use me to hopefully encourage others going through similar heartache, or even just to let them know what you’re feeling is ok. There is no “normal” when your child dies.

Stuck in Grief

I’m starting to understand why people say year 2 is the hardest after a loved one dies. Lately I’ve been feeling stuck in my grief and no real desire to get unstuck. The first year was so hard but I also felt numb for a lot of it. I’m not numb this year. I find myself more often than not stopping myself from crying because I’m so tired of crying all the time. I’ve also found that stopping myself from crying leads to a build up that has to come out eventually.

Sunday was the day it started coming out again in full force. It was the 21st (Addy died on May 21) and it was also a Sunday (she died on a Sunday morning). Sundays are already hard but this past Sunday was a baptism celebration service…one more reminder of something Addalyn will never do. Not that it should even matter, she’s in heaven and being baptized isn’t what gets you there. But to this momma heart, it doesn’t make it easier. Since then tears have flowed easily and often.

At some point I will learn to accept grief is not something I will ever get past. I have to accept this is forever a part of my journey in life. If I don’t allow myself to cry when I need to, it makes it worse when it pushes its way out at the most inopportune moments. In a way I am stuck in grief because it’s not something I can escape, but the “stuck” I’m going through this time feels different. It feels like nobody cares or remembers that my heart is still shattered, while at the same time it feels like everyone knows and is looking at me as the “mom with a dead child.” It feels like a lump in my throat that doesn’t go away even after crying. It feels like the right words won’t come out (or any words) when I try to pray. It feels like jealousy of those who are happy. It feels like nothing will ultimately make this life suck less.

I know the things I should be doing that have helped me in the past but I don’t feel like doing them. I know when I’m running regularly and staying in the Word I feel the hope I have in Christ. Instead I find myself trying to change my surroundings with painting everything in sight. I love the changes, but it doesn’t make me feel any less stuck.

Thankfully, feelings are fleeting and I know I won’t always be stuck where I am right now. I will always grieve for Addalyn, but I won’t always feel stuck with no desire to get unstuck.

The hope I have in Christ isn’t about how I’m feeling. It’s about knowing he is my savior and he’s near me even when I don’t have the words to cry out to him. I know he loves me and I know it breaks his heart to see me hurting. I know grief isn’t something to get past or over, it’s something to journey through. I also know that while it might feel like an eternity of missing my baby girl, it won’t last for eternity. I will see her again and when I do there will be no more mourning or pain or feeling stuck. There will only be joy. Knowing what is to come is what gets me through the feelings of being stuck. It’s also what gives me my purpose in life. It’s not about me.

No First Day of School

I can’t stop thinking about what tomorrow would have been like. It would have been Addy’s first day of preschool with her bff, Emma. So many pictures would have been taken. She would be wearing the perfect outfit and bow, ready to meet her new teacher and friends. I was looking forward to this day before she died; her teacher already knew all about her and was looking forward to her being in her class (her bff told her all about Addy). But now, tomorrow is just another day that I miss my baby girl so incredibly much.

Once you make it through the first year after your child’s death you begin to think you’ve at least made it through all the firsts…but there’s always more. And why do we think that if we just make it through the firsts it will be alright? I suppose at some point we will just get used to her not being here, but I can’t imagine that ever happening. Every holiday or event just reminds me of what it could have been like if she was still here. I wish we could be getting her ready for her first day of school tomorrow, and stay up late talking and laughing about it, in true Addy fashion. Instead I will probably struggle to sleep and go to my second week back to school, teaching. I’ll put on a smile and try my best to be joyful while I grieve not getting a first day of school with my big girl.

Grief Changes Everything

Some things that change because of grief are obvious, things like always missing your child, holidays not feeling complete, and feeling a sadness that’s always there even through the laughter.

Things you don’t expect to change are things like feeling completely alone when surrounded by people, people disappearing from your life, being avoided by those who know but don’t know what to say, and feeling like no one else understands what you’re going through. Unless you’ve been there, it’s hard to understand how someone can feel so alone when surrounded by friends and family. While I have lots of people who offer encouragement and prayers on social media, I don’t have many who actually show up and want to be around me anymore. Invitations to events or to just hang out have pretty much gone away. Nobody really wants the people with a dead child at their party…talk about a downer. People avoid me like the plague fairly often. Very few people know what it’s like to burry a child and those who do know still don’t know what I’m going through because every situation is different. I’m starting to understand why people say the second year is the hardest. Any support that once existed goes away. You have to figure out how to keep going; it’s expected. People will let you down over and over again. It sounds great to be able to rely on others in a time of need, but just like me they’re human and they will make mistakes. We hurt those around us and say stupid things. The only one I can count on no matter what is my Creator. Satan loves it when we have all these feelings of being let down by others. He wants us to feel alone and isolated. He wants us to feel defeated and just give up on life. If there ever was a reason to give up on life, the death of your child is definitely a good one. But I don’t want to just give up. I don’t want the actions (or inactions) of others to effect who I am meant to be.

I don’t believe God took Addalyn for a reason, but I know He can use her death for a greater purpose. I have found those who have experienced the death of a child or close loved one (I don’t mean grand parents-we expect them to die before us, it’s not unnatural) are the best support and tend to stick around. I hope that one day people can say that about me. I know I’m not there yet, but I’m trying to get there. It takes more time than you could imagine to get to a point where you feel like you can actually do something to help others after the death of your child. It’s also really easy to use that pain as an excuse for not doing anything for others. One day I hope to look back and see how God was able to grow me into a better person, rather than a bitter angry person.

“He comforts us in all our troubles so that we can comfort others. When they are troubled, we will be able to give them the same comfort God has given us.” -2 Corinthians 1:4