Wow, I can't believe how fast time flies. It seems like such a coined phrase, but it is true. To think, 14 months ago we were waiting surgery. We had NO CLUE what our journey would be like. I am sure that fear and anxiety was over taking me, even if I did not want to admit it. I know God was holding us, and He had a great plan, but scary none the less.
My husband asked me last night when we can stop celebrating every one of her month Birthdays. I told him never. However, I celebrate every day with my children. Each day is a gift. None of us are promised tomorrow, sick or not. We need to stop putting off what we say we are going to do, and get it done. There may not be tomorrow. The important stuff, our salvation, our time with God, spending time with our children, telling our spouse what they mean to us. I am not talking about laundry and cleaning, even though I have a hard time with that. I do have to say I am getting better with that. I usually start off the day by asking God what His "to-do list" for me looks like. I try really hard to make them match, but often times fail.
Lydia had therapy today and I just love hearing how well she is doing. Not that I need that for verification, but it does feel good. To see that she is a child just like any other, is very encouraging. She has a smile and a laugh that is contagious. She has a determination like none I have seen before. She is stubborn (just like her father!!!!) but she knows what she wants. It is such an inspiration to watch. And to see her sister interact with her and see that, is just an amazing thing. Her sisters are far more determined and helping because of what Lydia has shown them. I feel SO blessed to be part of that. I thank God that I am able to watch that, grow from it, learn, and love beyond myself.
I do have to ask for prayers for Lydia. She has a little bit of a cold. It started out as allergies, but now is maybe a cold, maybe teeth. Whatever it is, it is causing her to cough a lot. It interrupts everything she is doing. Including her sleep...I was up with her for several hours last night. I pray that she can remain strong and fight this off. She still smiles, and talks, and plays, and laughs. It does not seem to have gotten her down whatsoever. So I am trying not to complain about my cough either!
The other night was I was reading some blogs about Down syndrome. Usually I don't much because I am very opinionated about it. I think every baby should live, there should not be an option for abortion. God has a plan and knows exactly what we need. However, I know that is not a popular belief. But it breaks my heart that people are missing out on the joy of these children. And mostly because of fear or wrong information. It makes me want to fight even harder and do more to let everyone know the blessing of a baby with Down syndrome.
I do have to say, it is a tough road. We had medical issues to deal with, but I would not trade it for anything. I have become a better person because of it. I have grown and learned a lot. Things that I would not have. I feel truly blessed that God chose me to have this child. God wanted me to learn these things and experience pure joy and love like I have never loved before. It is in those tears and pain and suffering that I have found myself.
I too, did not understand just 14 months ago. Sometimes you can not fully understand until you are in those shoes and walking that journey. However, by educating and getting informed, you can understand better. Surrounding yourself with people who have this disability, you will soon learn that Down syndrome does not define them by any means. They are people just like you and me. They excel at some things and have trouble with others. No different than you and me. They, however, have a harder time with a lot because they constantly have to overcome these stereotypes. But education is the key to realizing how many myths there are about Down syndrome, and it is not how many people paint the picture. And most of the time it is painted by people who aren't surrounded by a person with Down syndrome.
It breaks my heart that the new statistic that came out is that 94% of prenatal testing that comes back with a diagnosis of Down syndrome are aborted. I want to cry out to Jesus and just ask WHY? They are missing one of the greatest blessings. I don't understand. I can't understand. I think that is one reason why God has allowed me to write Lydia's story....there are bad days, just like anything, but the joy is so much more.
Imagine someone telling you that your daughter would never eat. As you are deciding what surgery your daughter should have, all the information says that she will never grow, she may die, she will live a horrible life, there just does not seem to be a good option. You exhaust all of your possibilities and decide on a surgery. 14 months later, your child is thriving, is growing, is eating 100% on her own...no tube. Your daughter is full of laughter and smiles. Your daughter has more love than she knows what to do with. Your daughter has this bond with her sisters that is so special. You see your daughter spread love and joy to others. Your daughter is an inspiration. This is Lydia's story. See, we are not promised a future, we are not promised tomorrow. No one can say that Lydia WILL respond this way or that. Rather, they can say, based on what we have seen, this most likely will happen. I have faith, I walked blindly holding onto my Father's Hand and He NEVER let go, He NEVER let me fall. Things did not work out how I thought they should, but they worked out just as He had planned. To explain to someone that joy and emotion you have when you see your daughter doing what everyone else said they could not do.
And when did we become a society of telling children that they can't do that? I thought we encouraged children that they can be whatever they want to be when they grow up. I thought we encouraged the next generation to do their very best and try as hard as they can. Yet, that is often over looked in the medical field. We tend to think we know exactly what will happen when we don't have a clue ourselves. TRUST. God is the ONLY one who knows what is going to happen.
Sorry, I am so passionate about this. It really fires me up. I think it is good to read the opposing views, but it is much better to educate. To provide the most accurate information. For mothers, families, fathers, grandparents who may be facing a birth where the diagnosis is Down syndrome....CONGRATULATIONS!!! Celebrate this child. Raise this child just as you would any of your children. They are a special blessing. They have joy that will melt your heart. The path will be hard, there will be days, but we all have that.
As we head into Down syndrome awareness month, take time to educate yourself on these special blessings. Take time to spread the word. Let's see if we can't get more accurate information out there. Don't be scared, God will hold you. God knows what you need and He WILL NOT let you fall. Don't let fear and anxiety or someone with false information rob you of the joy and blessing a child with Down syndrome will bring to your life.