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.