Lydia's second birthday has come and gone. The emotion that filled that day still lingers. However, I sit back and think about what I learned, what I really learned. I so badly wanted to type and explain what I have learned, what it has meant to me having someone like her in my life. However, the page was blank, my mind was full yet empty. I realized that I never really will know what I have learned or how to communicate that, I realized that as I walk this journey I am learning, growing, changing. But most of all, I realized that I have come to another one of those transition points. I am transitioning out of grieving and stepping into total acceptance, or so I believe.
When we were first going through everything, our Fetal Concerns Manager gave us a poem called "Welcome to Holland." I read it and thought that it was dumb because I thought of course I am somewhere different. I am pretty sure most people who encounter something like this were given this poem, have stumbled across it, someone has mentioned it to them. It is a great poem to give the analogy that things won't be as you planned, that things will be different and soon you will come to accept the new place you are in. You may always dream of being some where else, but Holland is where you are.
I think it is a great poem, however for me, it did not touch on the process that you need to go through to truly appreciate Holland. I knew we were someone place different. I have two other children. I did not have to go through half of the stuff we endured with Lydia with them. I knew that things would not be as I longed for. I knew that eventually I would come to a place where I would accept our circumstances. It does not mean that I love our daughter any less, that I think any less of her, but I understood (or thought that I did) that I was in a different place. But it did not tell me how to get to that place and it couldn't. That is something that I would have to grow into, something that I would have to learn on my own.
I don't think that I really understood. I thought I knew that we were in a different place that things would be different. I thought that I accepted them and I was OK with it. I thought, I thought, I thought. I had expectations. I had dreams. I longed for things. But when I looked at reality, those expectations were different, some where no longer there, some could not be possible. I questioned why? I was upset because there were times that I could not enjoy or accept where we were at. I wanted something different but I wanted nothing more than I was given. A confused mess.
I loved her and I never wanted anyone to think that I did not. I would not change her for anything. I would not make her different because she would not be Lydia. However, I had these secret dreams, these secret emotions. While I loved her, I was grieving these expectations that I had, I was longing for that image I had placed in my head. I was confused as to how to get this out of my head. I wanted to be in a place of total acceptance, but I had to deal with these secret emotions and I was embarrassed. How could I explain to someone else, how could someone else understand. I certainly did not want to give the wrong impression but I was unsure of how to walk that path, how to get to the next point.
Lydia's second birthday brought most of that out for me. I vividly remember Allison's (my second child) birthday. I remember what she was like, her milestones (I really have never paid attention to milestones, what they were doing at what age so this was VERY eye opening to me). I remember before age two she was potty trained. I remember going camping with her and she was talking, she understood me. I remember we could have conversations. I remember she was running around with the big kids, climbing on the playground. I remember she knew what a birthday was, she could open presents without any help and blow out the candle on her cake. I remember she was the picture perfect image of a two year old.
Then we celebrated Lydia's second birthday. She cannot walk, she needed lots of help ripping the paper (she could pretty easily open a present that was in a bag, understand it and enjoy it) she did not understand what was happening. She did not know that she was two. She could not blow the candles out on her cake, she still ate her food like a baby and needed a lot of assistance. We are no where near starting to potty train, she cannot be reasoned with. She is not talking and she is not running around playing with the other kids. This would not be my picture perfect image of a two year old.
Or is it? See in that moment when I realized what she is not, I also realize who she is. She is no where near what I expected in many ways. She may not be able to do any of that. But there is so many things that she can do. I can choose to focus on what she is able to do, celebrate those and just relish in the moment. Or I can choose to grieve and feel sorry for what I do not have, that image (and that is all that it is...an image) of what I thought I should have. Then I will miss out on everything that I do have.
See, I have a miracle. I have a child who proved to everyone that she can eat (the doctors told us to institutionalize her, that she would never eat orally, she would always have a feeding tube). She maybe needed help, but she is a LONG ways from being in an institution on a feeding tube. She could open a bag present like no body's business (it was very fun to watch). She is starting to walk and we celebrate every step. I will remember this much more than with the other girls. I can see the determination and accomplishment with her. See I have much more with her than I don't, but it is what I choose to focus on rather than what I choose to not focus on.
I think for many of us we take that for granted. It is their first birthday and they will eat cake, they will blow out the candle, they will open presents. It is their second birthday and those expectations are there again that they will do it. But what happens when those expectations can't be reached, when your child may not be able to do it? I say throw them out...they don't matter anyways. There is so much other stuff to focus on than someone else's ideals of what should happen. Or a silly image that you put in your mind of what your child should be. Look at what your child is and appreciate that. No matter where you are...Holland, or the United States; it's just an image, nothing that describes your child. You still have the pieces there, they just fit together differently (and really with each kid isn't that the truth....my other daughters are not the same by any means).
We have so many analogies to help describe this, but I think until you can come to terms with it for yourself, in your life, with where you are at....nothing really makes sense. It needs to click for you. And, just like everything else, it will happen on your own time line. For me it was her second birthday.
Maybe it helped that we were in the store and a lady came up to wish my daughter a happy birthday (I had Lydia in a birthday shirt). She said that it was so exciting that we were celebrating her first birthday. I said it is her second birthday. She looked at me and asked me if Lydia was stupid or something, she continued and said that there is no way she can be two because she cannot understand, she is small...and I guess in that woman's eyes that made my daughter stupid. Does it really matter? Do I need to prove something to her? No...but it hurts. The sting seems to lessen every time I hear that. But that is what makes us tough and unfortunately that is part of the journey.
It is the same as a family member who will not stop using the R word around me. I hate it...there are so many other words you can use to describe what you are describing without using that word. But does that describe my daughter...maybe (after all that was the medical term that use to describe kids like Lydia). I realize that it is not PC anymore and the R word has taken on such a different meaning. But does it matter? The sting is still there, but that does not describe her and I know that. I know that family member is not intending harm and certainly is not using it in a way to destroy my daughter.
I guess, the sting is always going to be there. It is always going to sting a little to realize that my daughter is behind, that she may not quite be like the other girls. The sting is always going to be there when I hear someone say something negative about my daughter, when I hear certain things. But if I throw out those expectations, if I live by Lydia's standards I think it is much easier. If I put aside my expectations and realize that this is where God has me, I can enjoy it. I can appreciate it. If I realize that I still have all of the puzzle pieces, they just fit together differently, I can appreciate what I was given and truly enjoy it.
I always have loved and appreciated Lydia, but things are hard. It takes time to truly appreciate where you are at, what you have been given....even if you never wanted to give it up in the first place. I have realized that the expectations for my children that I created in my mind just hold me back. I want to realize God's expectations for all of my kids, I want to love all of my kids for who they are, I want to give my kids a safe place and teach them about God and the other important things in life (relationships, accepting others for who they are...). The material things don't matter. Does it matter that she can't walk at the age of two? No. I love her still the same.
I am where God wants me to be. She is exactly where God has created her to be. If others can't accept it, I can't do anything about that. I can continue to educate and advocate for her. That is what I was designed to do...that is where God wants me to be and that is all that matters. I can stop searching for other things, I can stop longing for something that never was and I can enjoy this gift, this miracle.
And when I look at it..she is no different than you or me. She excels in some things and struggles in others. We all do. I don't see anyone but Lydia, my daughter.