This above picture is the day tragedy hit and our life forever changed. Our daughter lost any sense of normalcy the day she was born.
I am sitting here watching a movie. It is a one that I wouldn’t have picked to watch- if I knew what happened. It is bringing back so many memories and feelings.
I have a lot of time to think at night after the children go to bed. The house is quiet and all is calm. The chaos of the day is over, and nothing is really needing to be done. The nights are hard at times, because of the silence.
I have touched briefly on our daughters special needs. I haven’t yet spoken about about the effects of such a life changing event.
I don’t think people understand how we (parents) change. Maybe it is more the mother than the father. I think that is our case because we (mothers) are in the thick of it all. All the surgeries, hospital trips, ER visits, doctors appointments, therapies and so on. We are right there. Please don’t misconstrue my words. I am not meaning anything bad towards my husband. He is amazing, he works hard to support us. Just making a point, that this effects us differently.
After our a tragedy, I don’t know if we are ever going to be the same person. I mean that in a good way and also not so good. Am closer with God-yes, but sometimes it is hard to recognize who I am. I am not that bubbly out going person anymore. I am guarded and cautious. I am not that half glass full, I am more the half glass empty. I don’t trust people, because a person caused our daughters outcome. That is a tough thing to swallow- still to this day.
I think mommas we just have to take it one day at a time. We have to help our child, and help ourselves as well. Life is never going to be the same. I can’t even say if we, will ever be the same. I wish I could say that we will be. Its been four and a half years for us. You would think we could just adapt to this life, but I think for me, what keeps me on the edge is the dream that she will be healed. Maybe dream isn’t the right word, maybe Hope is better.
I often find myself thinking that her brain has been healed and her body is what holds her back. I don’t know, and not sure I will ever will know. It seems over the last four years that the hits keep on coming. That maybe part of the reason I am glass half empty person. I am often left wondering what is next? What next could possibly go wrong? She lost her hearing in 2019. That was hard. Now on my shoulders is trying to teach her sign language, and also help her learn to use a tablet that speaks for her. She has vision issues but we don’t know how bad. Doctors have said she is legally blind, but what is that exactly? I know she can see. I just don’t know how clear it is.
The pressures that mount up on us mommas, (of children with special needs) is more than people realize. We often carry around a pile of guilt that we are failing, even though we know deep down we aren’t. It is easy for us to sit and think, could I have done more today? This life isn’t for the faint of heart.
I am not sure exactly where I am going with this. I’m just writing what is on my heart tonight. We have these days, or weeks. It is okay to have them. It is okay to be sad. Life is hard. One thing I have learned is that I am stronger. I am stronger now than I ever have been. I remember many years ago a good friend of mine telling me I was a doormat. I had no backbone. She wasn’t meaning that in a bad way. She was right. I was a people pleaser. My daughter changed that quickly. I had to become a fighter for her.
I guess I just want to say that I understand. I understand the load that we carry around every.sinlge.day. I understand the hurt we feel on a daily basis. I understand the joy we feel for those small steps forward. I understand the stomach punches, when you have to go back a few steps. I understand the ups and downs of this life. Not many do. Not unless they have lived it. It is a lonely walk at times, momma, I am here to say, you are not alone.
I see you. I see you as you take your child to and from all the therapies. I see you as you hold it together, when all you want to do is fall apart. I see you as you talk to the doctors about alternative treatments, and the responses some of them have them to say. I see you staying strong and showing up everyday for your child. You are a hero. You are a warrior.
We don’t have to be the same person we was, who ever is? We are growing and learning. Many of us are learning more than we ever wanted to learn. We are wiser now than before. We are stronger now than before. We are better now, for being able to be the mother to our wonderful amazing child.
Here is a poem that I have carried with me for a long time now. I love Holland. I hope you do as well. You may find your way to Italy, and what a day that will be, if you do. That means healing. If God so chooses for us to stay in Holland, well- we have to trust his ways.
” For my thoughts are not your thoughts, neither are your ways my ways,” declared the Lord. “As the heavens are higher than the earth, so are my ways higher than your ways and my thoughts than your thoughts” Isaiah 55:8-9
May God be with you as you make your way through the ups and downs of this journey. May God carry you on those hard days, and walk beside you on the good days. May you lean on him and draw him near to you. May you learn all he is wanting you to learn, and praise HIM always.