I find myself wandering back to two years ago and reflecting on a life that I had no clue about. On a life that had a new label, but I couldn't begin to understand what that label meant. A life that I was so excited about but yet so scared. I loved this child more than anything, but what would it mean to have a child who has Down syndrome? What new things would we encounter, could I handle it, what would her life be like, how would my other girls adapt, would my husband and I be able to make it through? A picture I just could not understand, one that I was scared and yet excited.
Two years later, the questions have changed. My outlook so different now. That prenatal test of Down syndrome really means nothing. There is no way to put a label on your child and describe them before you see their potential; before your child can even realize their potential. All a prenatal diagnosis means is there may be some health risks and you are in for the ride of your life.
I say ride of your life, because Lydia has taught me things that I am so blessed to have learned. Lydia has taught me about life and love. Today I was holding her and I just shouted and danced with her. I wanted to squeeze her so hard because I love her so much. I have been struggling lately and all I need to do is see her smile and instantly I am a new person. My heart melts every time she interacts with her sisters. To see the love they have for one another is simply amazing.
My heart loves in ways that I never imagined I could love. My love for others, the way I look at things now has changed. And it is so awesome. She loves me with her whole heart. She feels things just as I am feeling them. She cares for me and it shows. She gets upset with the other girls are yelling and fighting. She makes sure everyone gets hugs. Even at age two, there is just something different. She knows when someone is hurting or happy and her goal is to make everyone happy. It is a breath of fresh air from living in today's society!
One of my prayers for Lydia is that she would know God, that she would have a personal relationship with God. I chuckle every time I say that because I just feel that there is something different about her. She has taught me about faith and love and God more than anything. She has the joy of what I have to say the Lord in her already. I know she has to believe that she is a sinner and understand that she needs God, that the Holy Spirit needs to help her, but it is just funny to me sometimes because she seems like she has that all figured out. I have lived 33 years and I am only understanding that now.
I feel at times I am percolating with love. Love is just spilling out of me and sometimes I am not sure what to do with it. I hug her and I dance with her. All of us girls embrace and often times sing. I know, sounds like something out of the Sound of Music, but it is true. There are more happy times than there are times of tension or anger now in our house.
Don't get me wrong, we have had our share of times when life was not perfect. But even at those times, she taught us about faith. She showed us how strong she was and what a fighter God created her to be. She has stretched us and made us grow. She has done things in our lives that no prenatal test could label. Just like our other kids, she will grow into her potential and surprise us. God has great things in store for her and no label will stop her.
The love she has taught me about is more than just a feeling. It is a sacrifice. It is a constant choice to make. The past couple of weeks I have been exhausted and tired. I have been questioning if I can continue doing this. But that is what true love is, not thinking about yourself and doing for others. We had the best example of that when Jesus died on the cross for our sins. He did nothing wrong, yet He endured the worst pain possible, just to save us, people who don't deserve that. While my love is nothing comparable to that, I have gotten a taste of that. I still am very selfish, but I battle it now, knowing that I am starting to understand true love.
So this love that is so amazing to me, this passion I have for my daughter is sometimes shadowed with how our society works. Even though I know that earthly things don't matter, that prenatal diagnosis puts Lydia in a category that I wish she would not have to be in. She is developmentally slow. She may not reach the potential of my other kids. She is labeled and often times to just get things that the other kids were handed; there is a fight.
This is the part of the diagnosis that I was unprepared for. This is what has hit me and has shaken me and I have a very hard time of accepting. We label kids like Lydia, we put them in a classification and we study them. Even though we are all smart enough to know that every child will learn at their own pace, we still label.
Going to a meeting hearing about how behind your child is, is probably one of the most heart wrenching days I have to endure. I don't need specialists to tell me that. The neighbor girls is really good at pointing out to me that the one year old baby is already walking and talking and Lydia, who is two, cannot do those things. I am in the store and someone comes up to me and tells me how small my child is, or asks her age and says how far behind she is...just by looking at her. I hear it all over, I don't need to pay someone to tell me that.
I do realize that there needs to be a base, I do realize that some of her "inventive" ways of doing things are not the very best for her joints and so forth. I do understand this, but sometimes there just seems like a better way. Sometimes there just seems to be a way to support a parent better than beating down the one thing this parent loves more than anything. I don't want anyone to say bad things about Lydia or any of my children.
And I know that the intentions are very good, but sometimes I just want to break free. I want to run to a place where there is no judging of my child, I don't hear how far behind she is, I don't have to be scared of her medical issues. I want to find that place where our love can percolate for one another with no worries, no boundaries, no strings attached. Most often we can in our home, but I hope you are getting the point that I am making.
Lydia has two appointments next week and that HUGE knot is already forming in my stomach. I have been worried at least for a year about her going to school. She does not have to do that until she is three. But our school district wants to put her in their daycare. That is not going to work for our family. These are the kinds of things you need to worry about and educate yourself about when you get that prenatal diagnosis of Down syndrome.
I realize that if I put my trust in God, things will work out just as they always have...for the best! However, I can't get rid of this knot, this feeling that society does to us. The way society has it all laid out. Sometimes I feel like they want to conform her to what they think instead of helping realize her potential. Sometimes I feel like they are more worried about what she can't do than what she can.
She may not be able to string those beads, stack those blocks, but she can make you laugh. She can entertain you for hours. And don't for one second think that she is not capable, because she has more determination than an Olympic athlete. She will work for hours, days to accomplish a task. She will out smart you in a second and then laugh at you! So what is important? Is it important that she accomplish all of these things, or is it important that she realizes her potential and how to unlock it? How is that accomplished?
I don't have the answers for any of those questions, and I am sure that I will battle against them most of the time raising her. But, I will choose to win this battle. I will choose to let my love percolate over and be the determining factor against all of these things. I will protect her from hearing that she has not accomplished this or that. I will show her and allow her to discover just what God has planned for her. God entrusted me with her and that is my duty to her and all of my children.
So as the knot forms in my stomach, making me grouchy and irritable, I will pray harder and trust God will allow me to win this battle. I will have to get some thick skin to accept that this is what God has planned for me. I will accept that this is how society deal with it, but it will not win in our house. We will continue to push her and encourage her and watch God's amazing plan unfold.
****I just have to say that it is not all bad, but it does bother me. This is what is on my heart as we are on the eve of some of these appointments. Having to stand firm in the amount of services she gets, hearing that she has not accomplished this goal or that, or trying to set goals for her is really hard for me. Watching her not perform the tasks that she can do because she is too busy socializing is very hard for me. They do grade her based on what she accomplishes in the three hours they see her...not a fair or accurate judgment. I do realize what they are doing...I am just stating my point from being a mom....it is hard. I know there are years ahead of me that it won't get easier either!