Today is one of those days for me. Emotions are getting the best of me. Usually on a day like today, I would stay away from the computer. I don't like others to think that I am complaining, that I don't like the cards that I am dealt, that I am fishing for something, that I need something, that I am not able to take care of myself... But today I thought I would write. I thought that I would let my emotions take over. I would try to expose that other side of living life in my journey. I do try to be thankful for what I have, but sometimes it is OK to let it out; I am praying for good therapy here!
Breathe in breathe out. I must remember that at times. When we first started out on this journey I couldn't wrap my mind around what life would look like. I could not picture what our new path would look like. One think that I have found out; you never know what that path looks like, it constantly changes. I have become accustom to changing and realizing that plans are just something that I would like to do, but Lydia will really determine what it is that we really do! I am OK with that most times; but sometimes it is draining. I feel bad for my other girls, but is it really bad? I don't think it is, I think that it more a battle of being selfish.
One thing that I could not prepare myself for was the constant needing from a child. I love the baby stage, but at times I am ready for a break. I can't just have a babysitter come over and babysit her. She needs specialized care and only sometimes is it safe to actually leave her. Lately she has been getting more upset and it keeps reminding me that we are doing the right thing and I am going to just have to get use to it. A child that has to constantly have an eye on. She is not my other two year olds. She is not independent. She needs help doing things and she needs someone to monitor her. I will miss it when it is not there, I will long for it and probably cry that no one needs me anymore. I need to enjoy that instead of complain. My mind drifts back to that picture that was painted in my head, and the images are not matching; but it is not really a bad thing....not even close. It is me letting go!
She is just discovering her voice and she yells all of the time. It makes my head hurt. I love her, but I wish there was a way to channel that, to have her speak, to deal with the splitting headaches I get from her screaming. Sometimes I walk in embarrassment through the grocery store as she screams. She is not screaming out of control, she is just trying to speak. I get it, but it does not mean that it is easy to deal with. I love her for her, so I will find a way to deal with it; but the picture in my head keeps getting more and more distorted. I need to change that image because she is my daughter and I would not change her for anything.
There are things with Lydia that I need to do a better job at accepting and just understanding that I am right where God wants me to be. I am on the exactly journey, doing the exact thing that God wants me to. I need to bring Him honor and glory in this too. There are other decisions involving Lydia that don't match that picture either. These are things that are just hard to accept. Maybe because they deal with material things, and as much as I would like to say that they don't matter, they do. I am a sinner and I fall short of what I know to be true and important.
I remember with Ellen we searched high and low for a crib for her. We searched for the bedding that was just perfect. When Allison came along, we had to move Ellen to a bigger bed and that search went on. Allison was able to have the perfect bedding and crib that Ellen left to her. I never thought anymore of that. Then Lydia came along. The bedding did not matter what it looked like but mattered if it was functional for her. What was the best for her? How could we keep her upright to keep her safe? There were so many more questions in there, it was not simple and it still is not.
We originally decided on the nap nanny. She has been in there since 2 months. We have used that every single night. Even when she came home, she was not able to sleep in her bassinet that was perfectly prepared for her arrival; it was not safe for her. Recently we have noticed that she is growing so much that she is just about out of the nap nanny. What do we do now? Upon more research we realize that the nap nanny is no longer, you are not suppose to use it! Ugh!
We found someone who would construct a custom bed for her. However, that is very costly. But where do you draw the line? Where do you say that money is more important than what is best for your daughter? There is one bed that may work, again it is very costly. So we begin the process of getting the letter of medical necessity, the prescription and then starting to work with the insurance company to see if they will cover it. But in the mean time, sleeping has become very hard for her because she is not in something safe. I constantly worry about her at night. Most nap and night times you can find her sleeping in her mommy or daddy's arms because she is upright. Not a horrible thing, but during the day I do get frustrated because it prevents me from doing things. I need to enjoy this moment, right where I am at.
Then there is insurance. I really should not get on this topic today. I spent over four hours on the phone with insurance and the hospital to get billing corrected. Not to mention the amount of time that was spent two months ago, a month prior to that. And it is the same story each time you call. It is just one big game. The insurance company tells me that the hospital is billing out wrong. You aren't able to see the exact bill, so you just have to trust that they are telling you the right thing. Then you talk to the hospital and they are doing it right of course. So they tell you that there is nothing more that they can do. They are doing everything that they are suppose to be doing and it is the insurance who is making the determination. So if I was upset with it then I would need to talk to the insurance. Just a game and I don't have time for games. Who am I suppose to trust? What am I suppose to do. It is like they have you in a corner and you have to just pay...there are no rights for you. GRRRRR.
Lydia has been getting more and more upset. We have learned that we are not able to allow her to get upset, or try to calm her as quickly as we can. If we can't, bad things happen. We ended up in the ER the other day because she was upset, choked, irritated her connection site, was too stressed and maybe had a virus or was teething on top of it. So we do our best to help her out. We do our best to be as observant to her needs and respond as quickly as possible. God gave her to us for a reason. So even if I feel like I am being too over protective or whatever else, I know that I am right where God wants me to be.
As I just vented; there are so many things that I am learning. Lately in the news there was a new finding that they can turn off Down syndrome. I would not change her for anything, she simply would not be herself. The good far out weight the bad, no matter how bad it is. Because I need to constantly take care of her I have learned how to be more compassionate, more patient (I have a very long way to go there, but I am surprised at how very little patients I had before), I have learned how to articulate my feelings/wants/needs to others, I have learned how to manage under pressure and stress which are constant, I have learned the lesson of persistence, I have learned the lesson of respect, I have learned how to treat people with respect even in really bad situations, I have learned how to love when all I really want to do is think about myself, I have learned how to serve others before myself. The list could go on with the things that I have learned, with how Lydia has changed me.
At the end of the day, I long to be like her. When I was a complete wreck today, crying and feeling sorry for myself, she was there with a HUGE grin on her face and a hug to wipe all my tears away. She has a connection with people that we all should envy. She has a way of loving, breaking down walls, making people feel important, even when she is so misunderstood in society.
That picture may not be perfectly painted. That picture may be very distorted. That picture may have looked completely different in my mind than what it looks like on paper. But that picture that is being painted is prettier than anything I have ever seen. The picture keeps changing; things being added and things being erased. There are lessons that are being learned and new color combinations that are being tried. The picture is better than ever imagined and I am the blessed one who gets to admire that picture day in and day out. So I can chose to focus on the little imperfections or I can stand back and admire the majesty of it all.
Sometimes, however, it feels good just to vent. It is a hard road that requires many people to help. It is a hard journey, but I would not change it for anything. Thanks for allowing me to vent. And I do really love her, my life, our journey EXACTLY the way it is.