Today is one of those days. It is raining and gloomy. The morning was OK, but it felt like another one of those days. Lydia is not eating AGAIN, we are experiencing more throwing up (mostly reflux we believe), and she is whining and off her schedule. No one slept well last night because of Lydia. And she is once again sleeping in the car after dropping the other girls off at school which I know will mess up our day. I received a text message that just makes me sad; it reminds me of broken relationships that I wish were strong. It is just a day that seems impossible to get through.
I was reminded of Zephaniah 3:17 this morning, "The Lord your God is with you. He is mighty to save." I was on Facebook and Dayspring had that on their wall. They also had this saying that just really hit me this morning.
GOD IS ON YOUR SIDE
If you are facing a giant-
Mean, ugly, and unfair.
If it looks impossible-
but looks are deceiving.
God is on your side
and He doesn't just stand by
and cheer you on-
He rushes into the battle
to fight for you!
How encouraging, I really needed to be reminded that no matter what, God is always there. No matter what the mountain is that stands in your way, He is fighting with you. Sometimes the storm never seems to pass. Sometimes you just feel like you need a break. It is not that you are not thankful for what you have, but sometimes it just seems hopeless. Yes, even in those moments He is there fighting alongside you.
One thing that I needed to be reminded of is that He is with you and even if your situation seems next to impossible, He is with you. In my life our mountain seems to have shifted. I give thanks for where our family has come from, the lessons I have learned, and that God is so faithful He brought our family through it. However, I wanted a break. It seems like our storm just shifted and even though we all accomplished so much, there is still so much to do. It seems like the break will never come, but isn't that how life is always? We never seem to have enough of anything and I am learning that I will never have enough of God!
Lydia has transitioned well to table food and now we are dealing with more reflux than ever before. We don't know if it is because of teeth (this is certainly possible with her), we are unsure if she is sick, or if this is just her. One of the side effects from her surgery is reflux and horrible reflux, for the rest of her life. She is completely off her schedule and that just adds so much stress to the entire family. As we dissect these new pieces and try to figure out our daughter it is so hard to think that God is with us. But He is. Just because I have not gotten what I thought I wanted or needed does not mean that He is not there. He has brought us through some dark moments and He will not leave us now.
And this leads me to a question that I have often wondered about, I know I will probably not ever know for sure. But, if we hadn't experienced that grief, and pain, and fear, and turmoil when we heard about the diagnosis of our daughter; Down syndrome, would we love her like we do? In many cases, even though the diagnosis of Down syndrome did not really affect us, it did. When you hear your child can't, your child won't, I would not expect that from your child, I think it makes you fight harder.
When you are given therapists to help you help your child accomplish things that you take for granted, doesn't that just bring you back? If you were anything like me, I never realized what it took to get a baby to sit, why mouthing was so important, the impact of having the babies bring their hands to mid line. It brought me back and allowed me to really understand how complicated this is, how much harder Lydia needs to work, and that it is OK to expect her to accomplish things.
Maybe this is why I feel it is so important to advocate for her. I want people to know that she can do it. I want people to understand her the way I do. I realize that will never be, but maybe those fears and worries and grieving were a must to feel the love for her that I do today? Maybe that is why I have the love for Lydia that I do. When I see her I hear people say she will never do that, she needs to be institutionalized but I see her doing what my other girls do and it just fills me up. It gives me hope beyond anything that I can explain, it energizes me to keep moving forward with her, and it makes me so proud to be her mom, look at what she accomplished, things they said she never would!
Maybe it is like being pregnant after the loss of a child? Maybe it is like having another child after a very premature baby? Maybe it is like getting remarried after loosing your husband? Maybe it is like being a mom after you lost your mom? I don't know, I haven't experienced any of these. Maybe it is facing your fears of what if history repeats itself, what if it is not OK? Then it is reaching that fear and realizing that it is just fine, the baby is OK, this marriage is different but just as strong; that things are good. Maybe it is realizing that you can do this because God is by your side fighting for you?
I have always thought that there is just something different about Lydia, but I am not able to put my finger on it. Maybe it is because I realize what goes into each of her accomplishments, maybe it is because I see her doing things that we were told she would never do, maybe it is because I faced my fears and realized what a special child she is no matter what the diagnosis is, maybe it is because I have been changed because of her to see the world in a whole new way? I would argue it is all of them, but I am so encouraged by knowing that no matter what, God is there to fight alongside of me. No matter what the mountain, the circumstance, the situation, God is there and He won't leave me. That is really good to know, because today I get to put together all of our stuff for transition for Lydia to go to school. No better day to do that than today!