It has been a VERY trying couple of weeks for me. I am worn out and exhausted. I feel like I have lost all hope. It has been very hard. However, through it all, I am reminded that God chose me, He gave me this journey, surely I am able to handle it with His help. But the days have been long and it seems like no one is there. I am reminded of that quote that the teacher is quiet during a test. I am just wondering what kind of test it is. I feel as though I have given everything over to Him...I am just struggling.
Every since our appointment I begin to question what I am doing. Why am I working so hard when her doctors seem to think she can't do it? Why am I pushing when everything seems so stacked against her? Why can't I just accept it and give up? Am I do the very best thing for her? I have asked how I can keep going on? I have even questioned where God is?
The road has been so long with so many bumps and it just seems like one thing on top of another. Don't get me wrong, we have had many great days and many praises and even witnessed many miracles. However, right now, today, things seem more than I can handle. Things seem way over the top.
This morning it was another day to try to get her to eat. It was another struggle getting the food down just to see it come up again. It was watching her struggle to breath and my heart was just aching. It is more conversations with my husband about what to do next. Who do we call? Do you think it is her teeth, her lungs, issues protecting her airway? Who should we call? The endless questions and the continued uncertainty pains me heart, continues to wear me down.
I just want her to have a couple of days where she is not struggling. We have had those days and they are so wonderful. I just want to be able to enjoy her and not have all of this "extra" stuff in the way. I don't want to continue to take away from my other children. I don't want to have to tell them no anymore. I want to enjoy things with them too. I want us to be a family just enjoying activities together. Yes, there have been days, I have not forgotten about them, but they seem too few. It is a struggle every day, we never know what is going to happen.
I am not trying to sound negative, but I am trying to be very honest with myself. I do understand that not everything is horrible, but in this spot today (and actually for a couple of weeks), I just am exhausted and totally worn out. I feel like my patience have been tested to the limits, I feel like all of our resources are used up, I just feel like we are continuing to hit a road block, we are financially exhausted, and I am stressed to the max. It is a tough situation, but there is hope. God is working on that with me. Today I am provided for, and that is all that I need. Today, God woke me and her, He has given us another day. What more is better than that? Through this He will make us strong.
I was reminded in a Bible study this morning that our children are a reward...each and everyone of them. And I have a purpose as a mom, a very important one. God created a mother for a very specific purpose. I was reminded that she was created fearfully and wonderfully created. She is exactly who she is suppose to be. I have been chosen to be at this specific spot.
So, I am trying to chose (it is extremely difficult) to be joyful even when the circumstance I am in seems hopeless. The battling of eating and worrying about the doctors and the ups and the downs just seem endless. The other night Eric just hung his head and was just sick of it. When will this stop? Will it stop? When will there be a time that we don't have to worry and she can just live?
But even in the questions I see this smile that lights up the world. I see these eyes that are full of life. I see a little girl that is determined to do so many things. I see a girl that has made a positive impact. I see a fighter and a child God is holding so close. I see a miracle. I see how she has brought a family together. I see how her sisters adore her and she adores her sisters. I see someone who is full of life. A hug from her melts my heart. She laughs and giggles and plays. She smiles and laughs and talks. She is now frowning and it is so cute. She loves to play peek-a-boo. A child like any other child. She hides her pain so well and caries herself like no one else can.
Even when the circumstances seem so hopeless, she is so joyful. She is doing what she knows how...being herself. I can't help but weep. Sometimes I feel like she is so much stronger than me. How did I get so blessed to have her?
I guess each circumstance has two sides to it. You can wallow in despair and frustration or you can see the bright side of things. You can feel defeated and ready to give up, or you can renew your strength in the Lord. I am trying to look on the bright side and hand over EVERYTHING to God. I struggle, but He is patient with me. He is waiting for me to learn.
Our specific prayer requests are: For Lydia to drink (our goal is about 16 oz a day and we are currently at 4 oz), for Lydia to continue to eat well (she has been doing pretty good), for the food to stay down (Lydia has had a really bad cough and it has caused her to throw up more), for her to get some comfort with her teeth, for her lungs to heal (her 02 levels have been lower and she has been laboring to breath more), I also ask for strength as we continue on this journey, I ask that you help me hand over everything to Him and I am able to praise Him through the storm, I also pray for our family that we are able to continue to get through these road bumps and know that God is holding each one of us.