Bumper Stickers

Before I get into what I want to talk about I have to brag on Rett a little. God really knew what he was doing when he choose Rett to be Levins big sister. It is kind of sad sometimes hearing Rett explain Levins being in the hospital to everyone, but it also makes me feel good because she loves to talk about her "Baby Sister". Rett and I had a date night to one of her favorite spots to eat the other night, Waffle House. My mom has always told me that Rett will tell everyone where her sister is at all times including Target employees. When we first sat down to eat Rett explains to the server that her "Baby Sister" is in the hospital because her tube came out and the doctor needs to fix it. This conversation goes on for a while and I can tell the server is overwhelmed. Rett loves Levins with all her heart. It really bothers her not having all of us together. Sometimes it is hard to admit but she is the glue that holds us all together. She is very hard headed sometimes but has the biggest heart. Her prayers at night are always about bringing Levins home. Mine are always thanking God for choosing us for this journey.

I have gotten hooked on the show "Born this Way" on A&E. If you haven't watched it I would encourage you to. It definitely shines a light on people with DS. A light that I needed to see. An episode I watched the other night involved a few of the girls trying on wedding dresses. Now every Dad has thought about their child getting married one day, but I'll admit with Levins I have not wanted to think about that. I was selfish and wrong to thing that would not happen one day. I can honestly say that I want that to happen one day, but she will have to live right next door. If I could have Rett on the other side that would be even better. I do understand that it will not happen that way, but it is wishful thinking. Most of you know that I cry a little more these days than I used to and I definitely cried watching the girls try on wedding dresses. I cried when one of the girls went on her first date. I am glad Cullie was taking a bath that time. She may would have reconsidered what she got herself into.

The past month has been a whirlwind. We have been out of town a few times for weddings. Weddings of family members that we are pretty close to. It has also been good for Cullie and I to get away for a couple days. It is tough on any marriage adding children. I mean that not in a bad way, but it can be challenging at times. But it's a challenge that we wanted. We could not imagine life any different. We left a wedding weekend early because Levins feeding tube came out. Which is normal and happens sometimes, but this time was different. Her stomach wall eroded required surgery to repair. We went from having a beer at a rehearsal dinner to the emergency room 3 hours later. It was a rough time for us because we felt like we had let some people down. I know we didn't, but it was still hard. Keep in mind we were heading to the ER no matter what. I offered to go on my own but I knew Cullie would call me crazy. We thought it was going to be an over night stay, but it ended up being a week long stay. It was a hard week. We didn't see much of each other. We alternated nights and would try to spend a little time together at the hospital. I learned a lot during that stay. I learned how quickly life can change. I learned how lucky we are to have our little fighter. I learned that there are still children at Levine everyday. Pray for them.

I drive a lot for work, which means I am always thinking. Cullie always teases me because when I talk to myself I move my lips like I am talking. I am sure people pull up next to me wondering what in the world is he talking about. I still have good and bad days like all people. Sometimes the stress of our daily lives gets to me and I talk a lot more. Today I was thinking about how all parents think their children are perfect and want a perfect child. I struggled for several hours thinking about what is the perfect child. Not perfect as in anything physical or mental capabilities, but aspirations for your child. During my argument with myself I pulled up to a stop light and saw a bumper sticker. "I love someone with Down Syndrome" is what the sticker stated. God knew what he was doing when I pulled up behind that car. Perfect children love one another. Quite frankly all children are perfect.

I have always wanted to raise our girls with confidence and to love one another. We had the pleasure of going to a "Buddy Walk" for Down Syndrome this past weekend. It was better this year because Levins was with us. I laughed a lot and watched everyone. I laughed at seeing how happy everyone was. I saw families with children who were teenagers. I saw children dancing like no one was watching. I hope I raise our girls to do that. I want them to live life that way. Life is too short to care about who is watching. I'll admit I used to care. Nowadays I could care less what anyone else thinks. I challenge everyone to live life that way.

I saw a board that was near the entrance that had a few pictures on it. I really have no idea why I went to look at it but I did. Once I did I kept checking it the rest of the day. It stated "Buddy Angels". That hit me pretty hard. It was pictures of children that were in heaven. One was a picture of a little girl around Levins age. I think about that every night. I also think about all babies that were not given the chance to live. I wish I could take every parent who had an ultra sound and was told they had markers for DS to a buddy walk. I think their mindset would change and they would realize how lucky they are.

Levins is doing very well with her swallowing. She has eaten applesauce at speech therapy which is huge for her. I watched her try to drink water from a sippy cup today and that is a miracle in itself. Someone told me that the milestones would be that much sweeter. Everyone was right. The little things are that much sweeter.

Our journey is exactly how I thought it would be. I know you are saying no way. Of course there are difficult times but I would not trade our journey for anyone else's. My wife, 2 girls, girl dog and girl cat have taught me how to be a Man. They have taught me to dance in street like no one is watching and to smile with your whole face. I'll admit if we ever get another dog it will be a boy. I need something to have guy talk with. Please continue to pray for my girls. Pray that they will continue to amaze us all everyday. Pray for this hard headed Daddy. Remember to smile with your whole face. Levins does it all the time!

9/9/16

"Now I lay me down to sleep, I pray the Lord my soul to keep. If I should die before I wake, I pray the Lord my soul to take. Amen"

                                         

That is the prayer Cullie says to our girls every night. I'll admit sometimes I listen on the monitor when she is putting them to bed. It has always been special, especially since I have always had a stomach turning feeling with Levins. I never told Cullie this, but I used to be unsure of whether we would make it to this day. My faith was in God to do His will, but I was scared. I was selfish and did not want him to take Levins, but knew he would have to be at the center of allowing her to get through all of the battles she had before her. I thank God everyday for allowing us to make it to this day with Levins. She is the strongest person I have ever met. I never could have imagined living without her now. She is truly my "Superhero".

I know it has been a while since I have updated everyone. We have finally gotten into our normal routine. Most people would think our life is far from normal, but we would not have it any other way. Levins is off oxygen and her lungs are doing great. We are working on swallowing and hopefully we will start working on baby food soon. She has come a long way. She can now sit up on her own and is making great strides in her physical therapy. We have been blessed with great therapists. Levins is truly an inspiration to all of us. I wish everyone could see her smile in person. It is something that I can not describe and honestly pictures do not even do it justice.

                                            

I have learned a lot about myself this past year. I have been at the bottom and know what it is like to be completely helpless watching your child struggle. I wake up some nights after having nightmares of being in the hospital and calling our parents to let them know Levins was not doing well. I honestly thought that day was going to be our last with Levins here with us. I would never wish that pain on anyone.

I've started to notice people staring at us.. I used to be that guy too. Now I know how it feels when you are in the line at Chick-fil-a and look around and see people staring at your daughter. I know she may look different and she has a feeding tube, but it still gets to me. I want to go all 20 year old Kyle and knock them one good time, but I realize not everyone understands. It will always be a struggle for me. Not because I care if anyone stares and me, I just do not want them starring at my daughter. It is something I will never get used to, but I will have to let it pass. I want to challenge you to not stare, but tell whatever child you are staring at how beautiful they are. Every child is made in the image of God which means they are all beautiful. Not going to lie I am a little partial to my girls and think they are both gorgeous.

                                       

The bond between sisters is very strong. Listening to Rett talk to Levins in the morning is very special. She loves her sister with all her heart and will do anything for her. She does not see DS or esophageal atresia she sees her sister. That in itself has taught me everything.

                                                

I am so lucky to have Cullie. Every marriage has its ups and downs. Everyone knows that is something that you have to work at daily, but I know I could not do life without her. She is strong and has put her life on hold basically to take care of our girls. How she keeps up with everything is beyond me. I was not sure I could love her anymore, but everyday she proves me wrong.

We have been so blessed to have access to Levine Children's hospital and their teams. I wish I could thank every doctor, nurse, nurse practioner, respiratory person, etc, but the list would be way too long. Do know that I owe you everything. You have given my child the opportunity to live and I will be forever grateful to you.

Thank you to our parents. Cullie and I have been blessed to have strong parents. Each of them has helped us out in so many ways. There have been days when they have stepped up more than they needed to. There have been days when they have taken out place when we needed to step away. Thank you. Thank you for showing me how to parent. Thank you for always having our back.

Thank you to our siblings. Each one of you have been there. Whether it is sitting in the NICU to give us a break, or sitting with me at a bar to relax, everyone has been strong and always been there.

Thank you to our friends. Your prayers have kept us going. Your time of sitting in the driveway with me till 2am to vent has helped me tremendously. Sometimes you need  to have a worry free couple hours and you all have made it happen.

I wish I could thank everyone but again we will be here all day.

We are truly going to celebrate Levins on her birthday. We have a lot to be thankful for. She has made us all better people. I encourage everyone to celebrate on 9/9/16. Levins has made this world a better place. She has changed a very stubborn Daddy. I know she will change a lot more as she gets older. Say a prayer for the families in the NICU that do not get to celebrate their child turning a year old. Each one of you will always be in my prayers and I know your children are watching over us all. Thank you for reading our story. You have turned a Daddy who does not voice his thoughts into someone who can share Levins story. Happy Birthday Levins. Daddy loves you!

Fatherhood 101

I will admit I thought I had Fatherhood all figured out before we had Rett and Levins. I envision God looking down at me and laughing. I have always done things the hard way. Sometimes because I know I can do it that way or because that's the only way I know. Being a Father, or Daddy as I am referred to is not something that can be taken lightly.

I'll never forget the first time Cullie tried to venture out of the house without Rett and I. I told myself I got this. She was around 4 months old and I mean really what all could go wrong. God was up there laughing. Cullie literally was just taking clothes to the dry cleaner. Somehow, Rett managed to projectile vomit all over me and have a massive, explosive popped.. I gagged several times to the point my eyes were watering. I proceed to text Cullie and ask her where she was. When she walked in the house I was in my boxers with Rett wrapped up in a towel. I realized how important Mama's are when it comes to patience and a strong stomach. . Keep in mind she was only gone for 30 minutes. I honestly think she talked Rett into showing out. It had to be staged. It was too perfect not to be. Hearing the garage door open and knowing back up was almost there was priceless.

That was the first time I had been thrown up on by a child and it surely was not the last. It taught me a lot about myself and how I really knew nothing about all that goes on when I am at work. It showed me how important all the roles of parents are. It showed me how wonderful Cullie is.

Being a Daddy is the greatest thing in the world. Levins has taught me how lucky and fragile Fatherhood can be. I reflect a lot these days. It is crazy to think that Levins has been home longer than she was in the NICU. How is that even possible? It's really hard to believe that she is 9 months old. Time flies and I really wish it would slow down. It has been a year since we found out our sweet girl may have DS. I still remember sitting on my back porch balling my eyes out. Asking God to please not let this be true for Levins. Again I was not mad for me but upset for Levins. I wish I could pull a move from "Back to the Future" and kick the legs from out of the chair. I would tell myself to get up and stop feeling sorry for our family. Little did I know that DS would make me a better Daddy. But that was not the bottom of our free fall of emotions. It has been a crazy year. A year I will never forget, but also a year that made us.

I think one of the things I have learned is that a child with special needs is not a burden on your life. I guess what I mean is I would always see parents with special needs and wonder how in the world do they handle that everyday. I was the guy that needed to read blogs like this. I needed to know that children like Levins are not burdens they are blessings. They change your life. They make you want to be better. Some people work their entire life to learn what life is about. Levins just has to smile and I understand.

Being a Daddy means a lot of different things... from discipline to picking your child up after she falls down the stairs. You want to hear something gut wrenching? Listen to your three year old do unwanted somersaults down the stairs. That will get your heart pumping. Levins will fall down the stairs one day just like Rett. Levins will also vomit on me. I am trying to say my wonderful "special needs" child is my child. I am her Daddy. She will never be a burden. She will always be my daughter. I dream about watching her run to me yelling "Daddy!" That day will be unreal. I can't wait for the day that we have conversations about how proud of her I am. I am proud to be her Daddy.

Thank you Rett and Levins for being perfect. Do know that Daddy is proud of you both. Please continue to pray for our girls. I am biased, but they are pretty special. Pray for Cullie as the food pump goes off every 4 hours and doctors appointments daily. I am proud to do life with such an amazing woman. Pray for me and my balancing acts of life. Thank you for reading our story!

Middleman

I think one of my biggest fears in the process is myself. I have been scared since Levins was born with complications and Down Syndrome of how I was going to be as a Father. One million things go through my mind. I often thought, "Am I going to be able to do this, but God will help me." I know that is selfish, but I am being real in saying that. I was scared. I tried to act like I had it all together but I didn't. I had no idea what we were getting into.

We went to a therapeutic horse riders show this past weekend. We have good friends who have a beautiful daughter who has cerebral palsy. She is another child that changed my life for the better. I have always looked up to parents of children with special needs and watching her family daily has given me a lot of strength. Each of our stories are different, but we can feed off one another. While at the show I saw children with different disabilities. One thing I saw a lot of was smiles, excitement and proud parents. There were children there that were told they would not make it out the NICU when they were born. It puts things in perspective when I think about who I look up to in life.

Our lives now have a lot of highs and lows. We were off oxygen for a week or so. It was amazing seeing Levins without oxygen on. She is so beautiful and I was so happy for her. She smiled just as big. It was sad seeing that she had a tan line where her tube was. It was just a reminder of how far she has come. She currently is getting over a cold which has increased her oxygen requirements. In a nut shell means she is back on oxygen. I know it is only for a small time, but I can not wait to take the oxygen back off.

I can say this and really mean it... Down Syndrome has made our family. I really mean that. It has made us better people. It has made us smile more. I do not have it all together and I never will. There will be days when I feel completely overwhelmed and question how are we going to make it through this. Levins will smile and I know it will be alright. I never wanted to be the "middleman" and be so into the moment. That is where I am now and honestly its the best place to be.

We added a new addition to the family. A cat named "Bella". I promise I am not a cat person and not sure that I ever will be. Seeing the look on Rett's face when she rounded the corner with her cat in her arms was worth it. I will admit I have already lined up where it will go when we go completely insane. It has been picked up by its tail and neck several times. I am pretty sure it used 8 of its 9 lives in the first 2 hours of meeting us. I was laughing last night at myself because Cullie was putting the girls to bed and I was sitting on the couch with a cat on my lap. Keep in mind it is an outside cat, and I didn't have the heart to listen to it whine in the laundry room. I blame Rett and Levins for turning me into a complete softy.

Cullie and I are coming up on our six year wedding anniversary. I look back on everything and at those moments I didn't think we were going to make it through it. I look back on the heart ache of not being able to get pregnant and the pain of knowing that there is a chance your child will not make it home from the hospital. We have never really taken the easy way through life but we appreciate things so much more. It has been a ride that God wanted us to take. It has been the longest some days and the shortest other days. I really mean it when I say I would not change anything. We have two beautiful, smart and loving girls. We have a dog and a cat. It's crazy how many thing we have to be thankful for these days.

Life is crazy busy, but we are living in the moment. Continue to pray for our girls. They amaze us daily. Pray for Cullie and her strength. Pray that I will wake up everyday and be the stable yet emotional guy I am these days. I encourage you to take Levins' advice and smile a little more. It is honestly the easiest way to make your day a little better!

Time Machine

My Dad always told me how time flies. I never really understood it. When you are young, you are always in a hurry to get to the next stage. I feel like I have been rushing to the next stage my whole life. I will be honest and say I wish the days were longer. I feel like our girls are so big now. They each are doing so many new things. I know it has been a while since I posted last. We have been really busy and I needed to take a break. I needed to sit back and watch more. I needed to be there more often and not trying to do to many things. I promise I will get better about keeping everyone up to date on Levins and Rett.

Levins is doing really well. She is still the sweetest little girl I know. Her smile can melt anyone's heart. She has been doing very well in speech therapy and physical therapy. Her attitude on life is something I envy. I still find myself looking at her scars and she seems to know. It is almost surreal. She will look at me and smile really big. I guess it is her way of telling me she is ok. She is getting big. It is crazy to think that she is going to be 8 months old in May.

One of the scariest things for all parents is watching their children grow up. I know ours are a long way from being grown ups but it is still bitter sweet seeing each of them going through each stage. Rett and I have been spending time riding around the neighborhood on the golf cart. She can sit on my lap now and steer. I promise I do not drive fast with her on it. It is crazy to think that she is old enough now to be able to do that. We ride and she talks to me about her day or wants to know who lives in each house. She normally talks me into stopping by the park for "5 minutes." We were there today and an older boy was playing. It amazed Rett that he was there without his Mama and Daddy. I guess what got to me the most is she didn't need me there to play with her. He was there and she was perfectly content talking with him the entire time. She even tried to invite him on a golf cart ride. I do understand that I have my hands full with her. She can talk to a brick wall and is a gorgeous little girl. I wanted to call in a time machine. I wanted to go back 2 years where all she wanted to do was have me help her up the stairs and help her down the small slide. It was definitely a bitter sweet moment for sure.

Life around our house is crazy. Levins requires a ton of extra attention, but I can tell you God picked the right Mama. Watching Cullie on a daily basis with our girls is pretty impressive. We have always talked that we wanted her to stay home with our children eventually. With the amount of appointments we have now, she has to stay at home. That is the hardest and most important job in the world. How she keeps up with everything and wakes up every four hours is insane. I know that she would not have it any other way. People have always told me that God chooses special people for extra special children. I can tell you he knew what he was doing with her. Our girls are blessed to learn from such a strong woman.

If you are reading this because you found out during pregnancy that your child is going to be blessed with Down Syndrome, do know that is a great ride. It is a ride that I would have never thought we would be going down. It is a ride that I would not change for the world. Rett is going to be a better person because of Levins. She is going to understand people better than most. She already understands things most adults do not understand. Levins is a blessing to many. Your journey will not be easy. Sometimes you will want to quit. Sometimes you will take a shower because you need to cry. Sometimes you smile uncontrollably because you know Levins knows who you are. Sometimes you will want to take her pain away. Do know that he or she will make you the proudest Daddy in the world.

While I work I get to meet a lot of people. I often have the opportunity to listen to someone's story while we are riding around or when I am stopping by to introduce myself. It is always neat to hear stories of how someone with Down Syndrome changed their life. I do not go around with a sign on my back that says Levins has DS, but normally the conversation gets to family and I always show pictures of our girls. It is pretty neat being able to share things about my family and our faith. Some people are amazed that I woke up at 4:00 am to make an 8:00 am meeting in Savannah. Once they dig a little bit into our family they understand. I am humbled how many people want to know about Levins. Having her in our lives has shown me how good people can be.

One thing Levins has taught me is to smile more. It is free and honestly is not hard to do. Smile more! I promise it will make your days better. Who knows, you may make someone else's day better. I do not take things for granted anymore. Things like swallowing are such a big deal. Pray for Levins that she will continue to grow and smile. Pray for Rett as we conquer potty training! Pray that she will continue to have our priceless talks on the golf cart. Pray for Cullie and her strength. Pray for me.

I will leave everyone with a timeout conversation with Rett.

We had a timeout stint in Cullie's car the other night. Rett was screaming and crying and throwing a typical three year old tantrum. She finally calmed down and I told her we needed to talk.

Me "Rett, you are going to have to understand that Daddy and Mama are in charge."
Rett immediately starts balling crying. "But Daddy I want to be in charge!!!"
Me "No, Rett. One day when you have babies you can be in charge and until then we are in charge."
Rett crying "But Daddy I have a lot of babies at home!!"
Me "No, those are your toy babies."
Rett after a long pause "But Daddy God told me I was in charge."
Me "I have nothing else to say."

She pulled that card alright. I was excited she referenced God, but was not excited that she thought she was still in charge. We had the same small argument for at least a week. She would randomly walk up to me and ask "Can I please be in charge?"

Nightmares

One of my biggest fears is not being here. It is one of my biggest struggles as a Father. Knowing that one day someone is going say something that hurts Rett or Levins. People can be cruel sometimes and I try to let Rett know to keep her head up at all times. The nightmare I have is when someone says something about Levins in a negative way. It is definitely something that will happen and making sure I am ready to explain that to Levins or Rett is real.

I can honestly say when I see Levins all I see is my daughter. I see a fighter who will become a gorgeous woman one day. Not everyone will see that. Not everyone will know Levins before they make decisions on how they will feel about her. It's honestly sad that we even have to have those fears.

There will be a day when someone uses the word "Retarted" in reference to my amazing daughter. I honestly do not know how I will react. It is a word that I admittedly used to use when I did something wrong. Now it makes me sick to think about someone using that in reference to the mental capabilities of Levins. I can say that it is not a term I used in vain to hurt someone. I do believe it is time to make a change and retire the word all together. I want people to see her smile and see how she is a beautiful PERSON... Levins has 10 fingers, 10 toes, a heart, and a brain just like everyone else. The only thing different is God choose to bless her with an extra chromosome that makes her smile bigger and care that much more. That is what some think makes her "r"? I think they need to look in the mirror.

This is a fear that will never go away. The only person that can honestly change people's mindset on DS is Levins. I'll admit I had no idea really what DS entailed before Levins. I'll admit I still don't. I never will. I see my daughter, not a label. I see perfection in God's eyes. Really what else matters?

Having a child with a feeding pump and oxygen has its challenges. Not being able to walk from room to room whenever you want with her can be tough. Watching your wife carry everything around all day is stomach turning. Not because she doesn't want to but because she has too. Levins' special needs throughout her life will be challenging, but they will be met. I don't ever get up and say this is easy. I get up everyday and accept the challenge. I get up and thank God for bringing us two beautiful girls. Two girls that have taught their Daddy so much.

Watching Rett with Levins is probably the best moments in my life. Rett sees Levins in the perfect way. It is the way I envision God looking at Levins. The joy and love she has for her is unreal. She sees perfection. She does not see what society may label as imperfect. She sees her sister, someone that she will watch over her entire life.

September 9, 2015 our lives changed forever. They really did. We were blessed with our daughter Ann Levins Mounts. That I believe is what the world is missing using the "r" word. She is our daughter. She is a person. If your reading this, she is a lot like you or your baby. She has major blow out poopies which are gross. Sometimes they make me gag. I'll admit that is one thing I have not gotten a stomach for. She is more like everyone else than many realize. Some things may take longer. She may not walk until she is 2, but we will be there to catch her when she falls. She may not talk as soon as another child, but she will talk. She may not be a brain surgeon, but how many people are.

I will even make a bold statement and say once you meet her you will probably want to be more like her. You will want to love like she loves. I know you will try to smile as big as she does. Trust me I have tried but my whole face can't smile! It's time we stop using the word "Retarted". If I hear someone use it I will probably tell them to define it. I want to know what they think. I feel bad for them. Pray for them. Pray that they too will one day strive to be like Levins.

We all strive to have a purpose in life. I believe one of mine now is to change the thinking on DS. Levins and everyone else who is blessed with DS deserves that. Every child needs advocates. One day when I am not here to protect Levins and Rett I hope they will say we always stood next to them and behind them.

I hope that reading this you know how strong Cullie is. She posted on Instagram the other day and it's something I want to share.

"I can't even begin to express how proud I am to be this precious girl's Mama...today and everyday. I love absolutely everything about her and wouldn't change one wild hair on her head. I love the way she smiles with her entire face and completely melts my heart. I love the way she looks at her sweet sister. I love that she never meets a stranger. I love that she is the happiest baby I know even though she has dealt with more in her short six months, than most people do in a lifetime. But, most of all, I love that God chose to make her mine. #WorldDownSyndromeDay "

That is a Mama that prayed for her perfect child and God answered her prayers. Today I encourage you to pray for society to understand DS. Pray for Levins and Rett that they both get over colds. Pray for Cullie's continued strength. Pray for me and patience when someone uses the wrong words. Thank you for wanting to know our Family. We really appreciate the support!

Superhero

I wake up a lot randomly at night and think.  I normally think about our girls and our lives together. I think a lot about Levins. I think about DS as a whole.

I challenged myself the other night to think about what DS means to me as a Father. I was inspired by another Father who posted a video of the same challenge. I guess it means a lot of different things to me. It means love. I never knew how much I could love someone so unconditionally until we had Rett and Levins. Its hard not to love a child who smiles all the time and never quits. Levins does not know how to not love.

I think of pain. The pain that she has been through makes me physically sick when I think about it. I think of beauty. People who are blessed with DS see the beautiful side of life. The glass is always half full. They honestly live life the christian way. I think of joy. The pure happiness that Levins has is remarkable.

We had a rough week or so last week. I never thought about how bad a cold could be for Levins. She of course is still not very good at swallowing. Having a cold and not being able to swallow can lead to a lot of things. One being Aspiration Pneumonia. Seeing Levins sick is tough. She has been through so much. I honestly was devastated that she was going through this.

It was a hard time on Rett, Cullie and I too. The only time we got to spend together that week was dinner the night we got discharged, but then Cullie took Levins back to the ER that night and stayed the rest of the week. It was a grind. Levins required one of us to be there. Not that we would not have been up there anyway, but there was no way around it. Cullie and I rotated nights and days at the hospital. I have a huge amount of respect and thankfulness for Cullie after spending a night in the hospital by myself with Levins. I had to make sure she had everything she needed. I think I slept one or two hours all night. From changing diapers and the food pump to nurse visits, doctor visits, respiratory visits, and play time, it did not allow much sleep. I will never forget holding her arms down while she got an IV. That scream will be in my dreams forever. I think she ended up getting 4 or 5 IV's that week. She was pretty stopped up and pretty much vomited all of her secretions. That was tough to watch. Constantly suctioning her made it easier for her to breathe. She ended up running a fever of around 103 for a couple days. Needless to say I am glad we are over the hump of our first cold while at home. She deserves a couple days of good health and smiles.

I try to talk to as many people as I can when I am at the hospital. You can learn a lot about people in general from listening to their stories. I met another man in the hospital elevator. He was heading up to the 11th floor. That floor scares me to death. It is the pediatric cancer floor. He told me he was taking home his 11 year old son that day. I said I was so excited for him. He proceeded to tell me he had 6 months to live........I was in complete shock. He told me he didn't always believe in God but through all this, he was a believer now. I wake up at night thinking of his son and him. Thinking about how much pain they are in. Every time I think to myself how are you going to get through this? I think of him.

I am a big believer in treating everyone with respect and being nice in general. I talk to the tech's and cleaning crew in the hospital rooms just as much as the doctors. I know most people think I really talk to brick walls but I think they need to be thanked for what they do. I was talking to a tech one night about faith and other things. I brought it up which I could tell she was excited. She told me a story of a man who passed away years ago. He was alone. No one can to visit him. She finally asked one day where his family was. He stated he did not have any family left. He said he knew now how selfish he was for not wanting to have children. All the money in the world could not bring him happiness in his last days on Earth. That hit me pretty hard. It taught me even more to pay attention to the relationships inside the four walls of my home.

I thank God all the time for bringing Levins into my life. At first I honestly did not know what He was doing. I still ask Him why does she need to go through so much pain. I pray that He will put the pain on me instead. I thank Him, though, for allowing me to see a child who knows only the good in people. After she was done screaming from the pain of her IV needle pokes she immediately started to smile at me. How could she smile? She is honestly happy to be alive and fighting. She is my superhero.

My favorite time of the day is the morning. I get excited to see Levins when she first wakes up. Normally Rett is in our bed by then and everyone is together. Levins wakes up in the best moods. I think you can see her smile from space. She wakes up and talks and talks and talks. Those moments are moments that I know will not last forever. Pretty soon Rett won't think it's "cool" to come lay in our bed and Levins will be in her own room. The point of this is to enjoy the little things in life. If we all woke up every morning and smiled, think about how much we could get accomplished?

Pray for my girls. Pray that Levins will get healthier by the day. Pray that Rett will have her Family all together for a while. Pray for Cullie that she can continue to be everywhere she needs to be at home. Pray for me that I will grow into the rock we need me to be. Thank you for love and support.

Humbled

I know I have said before that we have an unbelievable support system, but I don't really think I ever know how big it really is. I knew when Levins was born that we would never be alone. Our faith tells us that we are never alone. Our family, church family, and friends let us know how much support we really have this past Sunday.

We have always been believers in infant baptism. I know God watches over our children no matter what, but I feel it is important for us as parents as well. The humbling time in this process was standing in front of our church congregation. I was holding Levins with her food pump and oxygen. Cullie was holding Rett. Our minister made a comment that he forget the tissues. Standing up there and looking through the crowd was humbling. Seeing all the people that we haven't seen lately but have received cards or meals from was something I can't describe. Levins was born into a great "village." Cullie and I understand that we can not do this alone, and I can assure you we understand that we won't have to. It was a big day for us. It was kind of like the day when we brought her out for good. A lot of people got to see her and it felt good to see the smiles on everyone's faces. Believe it or not I did hold it together. I could not look at certain people because I knew I would loose it. I saw several people with tears in their eyes. That put everything into perspective.

Our daily routine is starting to come together. Cullie is at home with the most important job in the world. She still amazes me on a daily basis. Being at home with the girls every day can be challenging. I know that she would have it no other way. She sends me pictures of she and the girls throughout the day. Normally with all smiles.

Levins is a very determined child. She gets that from Cullie. She is going to sit up soon and I am sure she would have already rolled over if it wasn't for her feeding tube. She does have a few delays but nothing out of the ordinary from being in the NICU 4 months. She is about 2 months behind for a 5 month old. I didn't read books on what Levins should be doing based on DS. I told myself that she will determine what she can or cannot do. She will not be 2 months behind for long. She will change several people's thinking on what a child with DS is capable of accomplishing.

Rett has shown me how strong she is. She has always been strong-willed and determined as well. I was always concerned how she would react to having Levins needing special attention. I can tell you she has taken everything in stride. Of course we have our 3 year old moments a lot but she understands how special it is to have Levins home. She will sneak up to Levins when no one is around and give her kisses. My fear of who will watch over Levins later in life is always answered by our 3 year old.

I can tell you that your marriage is very important when you have children. I could not make it through this time in our lives if our marriage was not strong. Spend time together and make time for each other. Your children can tell when you are stressed. I'm not saying everything in life will be perfect everyday because it won't, but get up everyday and try. Try to be a better husband and father. Trust me I have a lot to work on and so does everyone else. If your family is blessed with a child that has DS, stress will come. Focus on the important things and don't dwell on the minor things. Is your house going to spot less or is your garage cleaned everyday? No chance. I encourage you to focus on the relationships in your home.  That is what matters at the end of the day. Sorry I'll get off my soap box, but I think it's important.

Please continue to pray for our family. Do know that we can never thank each one of you enough.

Thankful

I sometimes wish I could go back to my 16 year old self and ask where I thought I would be when I was 30. I would have probably said a surgeon or entrepreneur who would retire young. The things in life that I thought were very important back then are not as important now. Of course I want to be at a better financial state, but I think we all strive to get to the next level. I always knew I wanted a family but it always scared me a little bit. I will always have the drive to provide and make sure my children are taken care of for years to come. But I guess what I am saying is I wish I could have told the younger me to concentrate on relationships and not focus on the material things in life. Cullie and our girls have taught me that. I have always been focused on being a better manager or more successful work wise (which I will never be able to turn off), but being a better person and friend is what is important. I have always had a big heart for people, but I ask myself now did I help the kid next to me in the hall who had a disability? Did I always do the right thing? No. I look back and remember times when I was not as helpful as I needed to be. It panics me. Being the cool kid is not what I strive to be anymore.

God has definitely tested our Family. I get asked a lot "How do y'all do that?" or "Y'all have to be so worn out!" We are worn out. It can be a lot. Waking up in a hospital room or Levins choking on her secretions all night can be rough. Would we change that? Would we be selfish and say I can not do this? No. That is not who we are. Our strength comes from watching our little girl fight. Our strength comes from watching Rett lay next to Levins and give her a kiss. Our strength comes from their smiles.

We had a rough week and weekend. Levins had a horrible swallow study. She failed miserably, which lead to a scope the next morning. Our surgeon said her esophagus was completely closed due a web of scar tissue that had formed. We went home soon after the procedure because Levins was doing well. That changed quickly. Her feeding tube button came off but we placed another one at home. Levins eventually woke up from a nap and would not stop crying. That was not her norm. We eventually ended up at the ER and were admitted for observation. After several breathing treatments she could finally breathe comfortably.

The next morning she took a turn for the worst. Her breathing was scary. She was breathing with her whole body. She was gasping for air. Her airway seemed to be closing. The crash team from the PICU came down to work on getting her stable. That is a real gut punch watching nurses and doctors run to your room. I called our parents to tell them to come in. I honestly was not sure she was going to make it through this. Her oxygen saturation, which is supposed to be between 90-100, was down in the low 30's. Seeing her like this is something I cannot describe. They figured out the problem and increased her oxygen flow. We ended up spending the Saturday night in the PICU. Cullie stayed the next night with her on a normal floor and we were discharged on Monday.

This was hard on everyone. Physically it was hard on Levins. She was worn out. Rett was crushed that weekend. Her sister and parents rushed away. She kept telling me we were not all together. She missed her sister. She panicked that she would be there for a long time. She had only been home a month and then she was gone again. The love Rett has for Levins is amazing. Her best friend was not home and she did not like that. When we were all finally home together Monday night she said something I won't forget, "This is the best day ever! We are all together." Wow. How is she so smart?! How did we get so lucky?!

I go back and forth about the genetic testing during pregnancy. We were strong enough in our faith to know Levins was going to come into this world if it was God's will. She is our baby and she is perfect. I wonder though what the motivation is for genetic testing. Is it for society to rid the world of what they call imperfect children? We live in a scary world. A world that is self centered. I wish I could be in every room that parents got the news there was a chance their child had Down syndrome. I want them to meet Levins. I want them to see her smile. I want to show them her scars. To show how real she is. How real she makes me want to be. Levins will never quit. She will never quit on anyone else either. I can see that already in a 5 month old child. Do not quit on the child who has an extra chromosome. That extra chromosome has changed my life for the better. She has made us all better people. I thank God every day for allowing me to know Levins.

I am thankful for waking up in the hospital. I am thankful for that smile. Do not worry about us. Don't worry about how much sleep we get.  Pray for the parents who just received news that they also will be blessed with a child who has DS. Pray that God will show them how lucky they are. Pray that God will show them the way. Pray for Cullie and her strength to push through everyday. Pray for Levins. Pray that she will continue to improve. Pray for Rett. Pray that she will have strength the next time we are in the hospital. Pray for me. Pray that I will arrive daily to be a better person. Pray that I will be the stable support my girls need.  All in all we have so much to be thankful for.