Monday, November 25, 2019

A heartbroken, but grateful Mama

It has been 4 weeks since I had my baby girl in my arms. There are days it feels much longer. There are also days that I have to catch myself before heading in her room to wake her up for school. Each day is a little harder in a lot of ways because it has been one more day since I have had her with me. I also find comfort in knowing that it is one day closer to that precious baby being in my arms again.

I am heartbroken. I am devastated. I am mad. I am confused. In the midst of all those feelings, I am also unbelievably grateful. I am so grateful that God chose me to be Levins' Mama. That I got to have that sweet baby with me for four years. Every day with her was a blessing and one that I will be forever thankful for. Four years was not enough, but knowing what I know now, I would still choose her every single time. I would do it again a million times over to get to have that precious child as my daughter.

Every single day was a fight for Levins. Selfishly, I wish she was still here fighting. But, I find so much comfort in knowing that she never has to fight or suffer again. I can't even imagine what a celebration it was when my sweet girl walked through the gates of Heaven and wrapped her tiny little arms around Jesus' neck.

Thank you so much to everyone for the outpouring of love and prayers. We could never tell you how much it has meant to us and what a comfort it has been. I am so thankful to live in this town. We have absolutely wonderful friends that feel more like family. Thank you to our church family. Thank you to our family. For being strong when we can't, and for being with us every step of the way.

Levins had such an impact on so many people. We have heard so many stories from people about how Levins influenced their life, and we are so grateful for those stories. God had a plan for her from day one. I am so glad I was a part of that plan. She made me a better Mama and a better person.

Thank you to my husband. God gave me the absolute right person I needed as a husband. He loves me and our girls like nobody else could. He is my best friend and there is no way I could get through these days without him. My girls and I are so blessed he is ours.

Thank you to Rett and Lola Jean. Being your Mama is the greatest gift I could ever ask for. Rett is so compassionate and kind and the best big sister I know. Lola Jean is a "mess bucket" as she would say. She keeps us on our toes, but is so tender hearted and loves her sisters fiercely. I am so thankful for both of you. You keep me going on days that I don't think I can go any more.

There are days I feel like I can't catch my breath. I miss her so much my heart physically hurts. We are taking one day at a time. That is all we can do. I will see my baby again. I will miss her every single day until that day comes.

Mama loves you so much Levie.


Friday, November 22, 2019

"I am gonna knock them down!"

I'll be honest and say it has been way too long for an update. It is good for me to sometimes sit down and write what is going on in our lives because it realizes stress.

We've had a lot change in the past year. We welcomed our third (yes, I said third) little girl. Lola Jean Mounts was born 08-09-17. She came into this world a very happy and feisty girl. I would not have thought it would be any different. Some of my buddies ask me all the time, "How is it to have 3?" Or I get the response, "Once you have 2, 3 is not that different." They lied.... But, I honestly would not change it for the world. I really did not think children could argue when they could not talk, but again I was wrong. I also didn't realize that a 3 year old and 1 year old child could make a 5 year old so mad.

Lola Jean is 100% Cullie’s twin. They look alike and act just alike. It’s really almost scary. I kid and say I only signed up for 1 Cullie.

I was talking to Rett the other night and she brought up what happens if someone is mean to Levins. That really has been a fear of mine. I am worried about how I will react. Will I drop the gloves and go like a wild animal? Or will I remember that they do not know what they are saying? Rett’s response was “Daddy, I am going to knock them down.”

I started writing this post over a year ago. I am going to attempt to use a few posts that I started just to catch everyone up on the past two years.

Rett and Lola Jean are great sisters to Levins. Rett has always been the mother type to them both. That does not mean they do not fight. They fight all the time. Levins and Lola Jean know how to push her buttons. Levins would intentionally do things like move Rett’s iPad or hit the screen to just get a reaction. I would always get on her for being mean but inside I laughed.

Lola Jean and Levins were “ride or die” sisters. If you messed with one, you better watch out. They were more like twins the past year as they were very similar developmentally. One or the other was more advanced at certain things but overall pretty close. They were very similar in size too. Lola’s nickname is “Tank” or “Mess Bucket.” She is a solid child. She packs a punch on the playground. Levins was a string bean. Very lanky looking. A lot of that was due to her esophageal atresia, but she would crush some yogurts and fruit squeezies throughout the day. Lola just eats whatever is in sight all day. Her favorite word is “snack.”

Both girls talk about Levie a good amount. Rett is always telling stories about her sister. That’s her way of coping. The first couple days she figured out how to airdrop from her iPad to whoever was at our house. She sent hundreds of pictures to everyone. She had a story for every picture. It was hard because everything was so fresh to us but that was her way of coping. She is seeing her counselor at school whenever needed, which has been a big help. At first Cullie and I struggled because Rett didn’t really want to talk to us about it. We found out that is natural as long as she is talking to someone. Lola Jean is 2 now. She still says things about Levins. When she hears a baby cry on TV she will say, "Levie is awake." As we were riding through the car wash, she said, “Levie is in Heaven Daddy.”

It honestly feels really weird at home. We are used to chaos all the time. We normally run the zone defense around the house. Man to man just doesn’t feel right. I really don’t think we want it to feel right. I know one day we will ease into our new normal. Our main focus has not changed, which is our marriage and kids.

I will say if you are reading this and going through a similar time in life my only advice is to talk to each other. It is very important to let the other one know how you are doing. Everyone processes things differently. Cullie and I have tough moments together and at different times. You also become very hyper sensitive about certain things. The normal small disagreements can be huge. You have to be aware of how each of you is feeling. Trust me, we are no experts on this. This is not something anyone can ever plan for, but you have to talk.

I am struggling with several different things. I didn’t cry the other day. It made me feel horrible. I really beat myself up over that. I know I shouldn’t have but I did. I still thought about Lev every minute but didn’t have the crazy emotion. This too can be a normal thing.

I went to Lev’s grave the other day. I’ll admit I was not ready for it. I felt bad that I had not visited her. I know she is not there but that is the last place her shell was placed.

A few of my dreams have been odd lately. I am dreaming about the things Cullie worried about everyday. Is she cold? Is she hungry? Does her tube need to be changed? I know she is not any of these things now that she is with Jesus. I think it’s something that I am struggling to let go of. She doesn’t need me anymore. She is where we all strive to be. Rett and I decided she is eating steak in Heaven. That’s Rett’s favorite meal and we know Lev can eat whatever she wants in Heaven.

My nightmares have not been as frequent the past couple nights. I think that has a lot to do with being exhausted. I have fought sleep since she went to Heaven. I am trying to think of good times with her before I fall asleep every night.

I have been listening to several Podcasts while driving around for work. Some from people who have been through horrible things and how they got through the stress. Several military veterans (not saying I have been through anything similar) talk about how they get through nightmares and stress. Many have said medicine was what they used initially and it somewhat put their issues in the closet. I am not saying I will not use medicine at some point if I need to. I just think it’s important to learn from others. Several of them have said talking about the events and struggles have helped the most. This blog is therapy for me. I am talking about it with tons of people every post. It is a real humbling time to let people know you are vulnerable. If you see me at the gym or in the garage working out at crazy times or crazy amounts, I am trying to wear myself out. It is also a place I feel closer to her. She fought everyday to walk and do things physically. It’s my way of feeling what she went through daily.

Please continue to pray for my family. We are all struggling. It’s hard to think about anything else right now. Thanksgiving is next week. It’s the first major event that Lev won’t be with us. It’s going to be tough but we are going to make the most of it. We will be with family and good friends. We will hug because that’s what Lev would do. I’ll probably cry a few times but she probably would have too. Thank you to everyone who has prayed for us. I can assure you we feel every one of them.



Wednesday, November 20, 2019

I honestly used to think 9-9-15 was the scariest day of my life. I didn’t know how our life would be. How was I going to be as a father to Levins. Could I handle the load? Could I be there when she needed me? Could I do it?

This blog was intended to hopefully save the life of a child with DS one day. It was going to show the joys of life with a child who was blessed with an extra chromosome. It eventually will get back to that I promise. We have a lot to share on the 4 years of love we were blessed with. But I am going to continue to try to be real. I think that’s important. Our story took a very hard turn 10-29-19. I hope that one day this will help someone who is going through something similar.

The biggest nightmare you can have as a parent is losing a child. Honestly it feels like your entire heart is ripped out of your chest. Every minute is a struggle. Cullie and I talk a bunch. Whether it is talking in person or via text when I am riding around for work. I don’t care how we talk as long as we are talking. I am being honest in saying every morning is a struggle to get up. I feel like I am in a constant dream which is a nightmare.

There are several stages to grieving. I am on a roller coaster between all stages. I process problems differently than some. I try not to dwell on the issue but just constantly try to find the solution. This is something I can never fix. I constantly replay that day over in my head. What if I did this? What if I did that? The challenging part of that is nothing will change the outcome. That is hard to swallow. I know in my heart that we did everything we possibly could to keep Levins with us for 4 years. We fought hard. I fought hard that day. But I question if it was enough. Should I have done something different?

I know you are thinking you can’t think that way. I’ll be honest in saying don’t tell me how to think. That’s real. That is the stage I am in. That is how I am processing everything. Will I stop this eventually? I hope so.

I am constantly replaying the last moment Levins was with us in my arms. I want that moment back so bad. I want her in my truck saying “Dada” or “luv you.” I miss her voice. Little things that I will never have again here on Earth. I want to dance in the kitchen and sing with the windows down. I want to roll down the windows and play toot noises so she laughs.

I struggle with the moments of when Cullie got to the hospital. I honestly can’t even talk about it. Hearing my wife scream is something I can’t get out of my head. I am the Daddy and I am supposed to be able to protect my family.

God and I have had a crazy relationship during my life. I feel like I have argued with him more recently than thanked him. But the crazy thing is he understands what I am going through. He lost a child. I think he appreciates the arguments. He knows how broken I am right now. He knows I need him more now that ever. One day I hope I have the opportunity to meet him in Heaven. I hope I can ask the questions I have. Yes I said questions. I don’t question His will but I am struggling with his timing.

Mental health is a huge issue. I focus all the time on trying to be in better physical shape. I have almost gone insane trying to wear myself out daily. The reason I do this is I don’t want to fall asleep. I am having severe nightmares. Ones that I would not wish on anyone. I am going to counseling to help me get through it. Yes, I am a man who won’t back down from anything, but I need help. I need help because my girls need me more now than ever. I can’t shove my issues in my head in a closet until I explode. I'm telling you this because it is ok to be vulnerable. It is ok to cry until you have no tears left. It is ok to say “Hey my head is not right.” I pray that the nightmares will turn into good dreams. I pray that I see Levins dancing with me in my dreams.

We have had so much outpouring of love. I wish I could send a card back to everyone that has sent my family a card. I’ll be honest I would probably have to take a second mortgage out to afford the postage. That is how many we have received. It took us a while to start opening them. Everyone of them had a hand written note. The majority of them had a story of how Levins touched their lives. Reading those made me cry and miss her. They also made me so proud. Proud of the girl she was. Proud she left that kind of an impression on everyone. As a parent that is all you can ask. You want your kids to be good people. You want them to challenge others to be better. I wish I could say I had something to do with that but I didn’t. Levins was born that way.

I am not intending for this to be a sad and feel sorry for me blog. That really is not my intention. My intention is to show you that Daddy’s have bad days. We have bad minutes. It is ok to be vulnerable. It is ok to cry. I am going through something that I wish on no person ever. I really mean that. I hope to show you that God will prevail. He will show me the way. I am not one to get preachy on anyone. One because I am not educated enough to have that conversation but I will tell you He is real. There are moments when I can feel her hugging me. I know God is with her because her arms fit all the around my body.

Trust in the Lord with all your heart,
    and do not lean on your own understanding.
In all your ways acknowledge him,
    and he will make straight your paths.         
Proverbs 3:5-6



Tuesday, November 12, 2019

Embrace the Chaos

10/29/19 was by far the worst day of my life. We lost a part of us. I know I have been gone a while on here but I do feel the need to tell the story of my best friend. I thank God every minute that he allowed me to be Levins's father here on Earth. God gave me strength to speak at her celebration of life. Below are my notes.

Dear Lord,

Please wrap your arms around this chubby fast talking Southern Daddy. I need you now more than ever.
Amen

I use a saying a lot in my life “They are stressing me out!”

As most of you know we sit in the front row of the church during service. Which 100% tears me out of my frame. I feel like the entire congregation  is staring at my crazy family. We used to bring Levins in due to fear of her getting sick and we just wanted her with us. She go from Cullie’s lap to Annie’s lap and then back to Cullie’s lap. As soon as the piano started she would go crazy. Singing and shaking side to side. I was so stressed.

I would often walk into our house from work and see medical supplies everywhere. I wanted our house to be clean and picked up. I was stressed.

This last Saturday we went to Food Lion. Cullie and I decided we didn’t need the stroller and we would carry Levins and Lola Jean. That lasted about 2 minutes. They were off. I looked down the aisle and all 3 of my kids were running. I had a vision of aisles acting like dominos and creating a huge mess. We then made it to the next aisle. My beautiful wife decided Lola needed a cup of Oreos to walk around and shop. Lola spilled the cup of Oreos while shopping. I frantically ran over there to clean up the mess. Out of the corner of my eye I see Levins. She is doing her run to the one man in the beer section. I guess she felt comfortable shopping in that department. She runs her hand up his leg and stops right below his shorts. It scared him and when he looked down Levins was hugging his leg. I ran over and apologized and turned her towards Cullie. I thought she was making a bee line to her sister who was about to run over everyone down the aisle but I was wrong. Levins then runs face first into a woman’s leg and starts dying laughing. There is more to the story which I will tell outside of church. Again I was stressed.

Sunday night we are in Levine Children's Hospital and Levins is in a lot of pain. We think she is severely constipated. The only way she was comfortable was when Cullie or I were walking back and forth in the small room. I felt my watch vibrate at 2am then again at 3. I kept thinking to myself I really want to be in my bed asleep.

I believe your body has 100 points a day. I think as a parent, that’s true too. How many points did I waste being stressed? What I am trying to get at is those are moments we will not have again here. I wasted my points on the things that did not matter. Enjoy the chaos! I pray for chaos right now.

Levins was blessed with an extra chromosome. When she was born on 9-9-15 I thought that was the scariest day of my life. Little did I know.  Levins taught me the meaning of life. She didn’t shake hands, she hugged. She cried when she was mad and yelled when she was hungry. She loved everyone. She did not see race, gender, wealth or hate. All she saw is love.

What is Love? Levins is Love. The naming process of a child can be quite a process especially when you marry a true southern woman. Names are limited to family names. Not going to lie there were a few suggestions that reminded me of the floral department at the pottery. I didn’t know this until after she was born that the name Levins means love. How powerful is that!

 What is Grief? Daddy’s of the world--it is ok to cry. You are still strong. This shows us how much we loved her.

I have been receiving several scriptures via text and phone calls. Keep them coming. My sister showed me a letter from her friend whose child is now in Heaven. The gist of the letter was small children are angles sent to us. Levins had a purpose. God knew her purpose.

I try to surround myself with smart people. I know most of you know my brother in laws so I may have lied a little bit. During work I ride with people who believe many things. I think that’s important in my walk with Christ. It allows me to believe stronger in the things I believe. Jesus is all around us all the time. Levins was sick Tuesday morning. I am driving frantically across the 49 bridge. Talked to my mom and told her I was taking her to ER. I am in traffic and look at the car next to me. Pop was there. God is good. He was with me the entire time. God knew I needed someone to hug and cry. Levins went to heaven in my arms.

The reason for the hats in here today is because of Levins. She would not let Grandaddy or Pop not wear a hat. She would yell until they put on one.

I want to take a moment to thank a few people

Thank you
Cullie- MAMA!!
Rett
LJ
Mimi & Annie
Grandaddy & Pop
Aunts & Uncles
Cousins
Family
Best Friends
Church
Community
Dr. Cosper
Pediatric Surgical Associates
Levine Children's Hospital
CCE I’m in
Bus drivers
Therapists (Gabby)- Come by anytime
DS community- we will always be with you
I know I missed several and know that we love you.

In closing our home is always open. We will grieve the loss of our Angel forever. A part of us will always be gone. We know where Levins is. We know we will see her again. For that reason we will celebrate the life of Ann Levins Mounts.

Please continue to pray for my family. We need it more than ever now. We are going to pick up the pieces. Levins was a special little girl. I will forever be grateful for ever day we spend.