I can't believe where the time has gone. She is 19 months already! She is our little miracle, our diva, our precious little one. How awesome is that! I could not have imagined where this journey would have turned out 19 months ago, and I won't even begin to imagine where it will be in another 19 months. God has incredible plans for each of our lives and Lydia's is no different.
Just this weekend I was in deep thought and prayer about my little Lydibug. I was just giving thanks as to where she is. Each day she is doing something new, learning a new skill and making us laugh at such silly things she does. She has a deep love for her sisters and it makes me just want to melt. She is constantly bringing people together and making everyone around her smile. She is a blessing that I needed, her sisters needed, her dad needed; that the world needed.
I can see my fears now from the first moments that we knew "something was not right." Fears that I never really wanted to face, but were there. Those fears of how do I love someone that is not like me? How do I take care of someone I know nothing about their needs? How do I protect my baby from the harsh reality of the world, even from myself? I think my silent fears were more of me getting over those rotten stereotypes than a real fear. When we do not know something we get scared, we listen to the wrong things.
However, I loved this girl and I did not even know it. I loved her and God knew that I needed her. She has taught me so much in her 19 months. She has taught everyone around her. The funny thing is, she has no clue because she is just being who she was created to be. That is the amazing part of it all.
And I can say in the days that come, things are getting easier. The decisions come easier, the advocating comes easier. I guess you learn that this is just part of what you were called to do. Your bond with your child grows stronger and stronger and some where along the way to gain confidence that you never knew you had. You are able to do things you never thought were possible. You realize that you are not alone, God is right there holding your hand, walking through every valley and mountain top.
There are times when I allow the "stuff" to consume me. However, there are more and more moments when I sit and watch her, and I am totally amazed. I think I get more amazed because at some point I bought into those stereotypes, I thought she couldn't do it. Even if I never said out loud, I am sure I thought it. I thought somewhere she may never do that. Or just that fear that consumed me overtook and I was not sure what it was she could do.
However, she is no different than my other children. I didn't know who they were, but I never had anyone tell me who they thought she would be. I did not know the struggles she would have, but I never had someone tell me the probable struggles she would have. I did not know how to take care of them, but I never had someone tell me that I couldn't take care of her. There is a difference. With the other girls, they were accepted at first thought, but Lydia, it has been a struggle really from the start in someone eyes. Once you get pass that, it is easier to push forward, accept, and live your life.
I can continue to reflect and go on and on. But in the living room the other night, I just was crying at how blessed I am. The question of how did I deserve this just kept coming to my mind. There sat a girl playing on the floor showing me pure joy. She kept turning herself in circles and laughing. She would look at me to verify that I was laughing and keep going. She was so proud of herself for what she was doing. She was having so much fun. I appreciate those moments, those intimate moments that God gives me to understand the blessing all my children are, these moments that we say pass too soon, but yet don't do anything to embrace them. These gifts that are on loan to us to take care of and one day return. I have been blessed because my Father knows what I need, because He is in control of my life and is providing for me everything I need.
Overall, things have been good. She is amazing. She is now climbing the stairs, she is now into everything. She is learning all kinds of new stuff. She is constantly learning and watching us to imitate us. It is way cool. She adores her sisters. Loves them! And they love her too.
Friday I was a bit frustrated as we are still having issues with this new medicine. It is causing her to throw up and not really want to eat. However, the pain has gone away. So there is good and bad. We are sorting through everything. The GI doctor wanted to admit her this past weekend to observe. Eric and I thought that was not the best idea because of her not being covered by the RSV shot. We did not want to expose her to things if we do not have a particular reason to.
Eric and I discussed more about taking her tube out and the game plan for her. Decisions are hard. Especially when you are relying on someone else to provide you the information. Eric and I have held pretty firmly that the tube needs to come out. We believe that she will do better once it is out. It is not that she cannot gain weight, it is that she has a hard time keeping it up when she is in pain. So we need to do what we can to get rid of that pain.
Making a decision based on what could potentially happen is not a way to make a decision. While we understand the capacity of this decision, we need to make sure we are doing what is best for her now. At any point there is going to be that possibility that she may stop eating and will need something to assist her down the road. However, we need to see what is happening now and going to benefit her today.
So we will watch her weight for the next two months. I will be contacting the surgeon to get surgery scheduled the end of April or the beginning of May. Getting it out is what she needs. We are at peace with that decision. And what happens down the road, we will have to deal with that then. She is not tolerating feeds through it, and we feel we are holding on to a security blanket for no reason. It may not be the cause of the problem, but it certainly is a symptom.
It is so great when God can come in and help you make decisions and you can feel at peace with them. No matter how big or small, praying and asking for guidance is important.
Today I will chose to not be consumed in the why but enjoy what I am given. I could ask why she has to be in so much pain, why me, why does she have to be different, why does it always have to be a battle? Or I could enjoy this moment that I am given, accepting that this is how God chose to make her and because of that she is perfect. She is a miracle and she is mine! To simply enjoy this blessing and learning and having fun.
I am enjoying her so much, learning, playing, laughing, having fun. I would not change anything because I would not be me and she would not be her! Praise God!