I find myself in the quietness of the house. Lydia is snuggled on her mat sleeping, the sun is shining on her face and all is perfect. Quietness is something that I have taken for granted, because I am not sure what it is. I thought that I would embrace the moment and write a little as I am sure it will not last!
The past couple of days have been a little tough on me. We had two different evaluations for Lydia to base where she is developmentally. While those things really should not matter, no matter how much I tell myself, they sting. They hurt and make me feel awful. Neither one of my other children were tested against things that they could not do and then told how dumb they were. OK, so Lydia was not told how dumb she is, but maybe you get the point?
I don't understand why the thought process is to compare apples to oranges? Why we need to continue to hit families when it is an already tough situation. I understand Lydia is delayed, she may be that her whole life. Who knows? My other children could be that way too. But because of her diagnoses, she is classified and then tested and then put under a microscope as to what she can and cannot do. It is one of the hardest things that I still have to accept and understand. Can't we celebrate where she is and look forward to the next milestone instead of comparing her with others that don't have her challenges? My six year old is not quite reading yet, but they do not compare her with the others and make a big deal. She is close, she will get it.
Maybe I am making a bigger deal than I ought to, but those words sting. Your 18 month old is only testing out at 8 months in her physical therapy skills. Part of me wants to jump and scream and celebrate. Do you know everything she has been through, this is a huge accomplishment. Do you understand her diagnosis and her set backs? The other part of me feels as though I have failed as a mom. Why is she not doing better, what else can I be doing? I am failing her.
It is a tough battle. I was not prepared for it either. I had two healthy children, the system does not operate for them in that way. I still can't understand why it operates this way for Lydia. I am lost. However, I keep pulling up my big girl pants and pushing forward. Fighting back the tears and the emotions, pushing towards what is best for my girl.
I know that it is not going to get better. I know I have to toughen up now and get use to it. There will be plans in school, there will be folks who don't feel she is as worth the time as I feel she is. There will be more obstacles, I understand. But for the moment I just want to let you know how unfair it is, how horrible of a feeling it feels. I know that I am not alone, I know many others go through it. It is tough. It is a constant battle in several directions, but I look in her eyes and my heart melts. I know she is worth it and more. I would do anything for any of my girls, no matter how much the words sting.
I am trying to choose not to focus on how bad those words sting. I think I would rather be hit over the head by a two by four than hear, constantly, how far behind my child is. How unnormal my child is. How much more work she needs to put into her development to get to "normal" standards. Now, let me stop for a moment, most of our care providers are super in telling us this information, however, we have had a couple that have not been sensitive at all. It is a constant thing that we do also. It does not go away and that is hard to hear over and over!
So, I will stop complaining. I want to tell you some of the things my daughter does. She makes me smile at almost every moment of the day. Her smile lights up a room (the other day we were in the store and Lydia smiled at someone. I asked them what drew her to Lydia. She said her smile. I asked if she could tell Lydia had Down Syndrome, and she said no. I just have always wondered and this simple question opened up a great conversation. Some people are so amazing. God blessed with with that wonderful conversation.) She laughs and plays constantly. She is stubborn. She does not like to eat, but she will play with you, she will cover her mouth and she will laugh and play, but you have to be super sneaky for her to take a bite. She loves to hid blocks in her outfits. Often times I will change her and find several blocks hiding in her back, just one more thing that makes me smile. She can do the splits better than anyone I know. I thought I was pretty flexible when I was younger, but man she is amazing. She fights harder than anyone I know. She is more determined than any person I have ever met. She will work at getting that toy in the hole until she is successful. Amazing. She loves more than anyone I have ever met. She makes sure to give everyone a hug and kiss and smile. She interacts with people and makes them smile, it is what makes her happy. She is so many things. Down syndrome is one of them, but that is truly what makes her her. Lydia does not know anything else than who she is and I never want her to know anything different.
So I will fight for you Lydia. I will do the very best that I can. I will try to guard you from hearing those words that sting so bad. However, I know that they are only words and do not do justice for who you are. You are one amazing child. You have brought our family together, you have taught us so many things. When we could be divided about eating, you have showed us if we all work together you will eat very well. We are all so blessed to have you in our lives. I am sure that you are by far a greater blessing than we ever will be. But I am honored to be your mother. I will endure the words and I will know that they don't define you. You define yourself. No diagnosis or test can really judge you. You have potential given to you by God and I am so excited to watch it grow.
I am sure if you do not have a child with special needs, it may be really hard to know what it is like to have your child judged constantly. However, I think we all can learn something, not one of us can be judged or defined based off anything other than who we are. Not our looks, not our weight, not our diagnosis, not our physical features, the amount of money we have or the car we drive. My faith defines me because I was created perfectly in His image. He is the author of my life. But nothing in this world can define me. Praise be to God for that. May I always remember this lesson, may I always remember what is the most important stuff.
Even though these days are tough to hear about how far behind my daughter is, I will rest peacefully knowing that she is right where God wants her to be!