Yesterday was a rough day. And I am just talking about the first hour of the day. Stress and other factors had gotten to me. Emotions and feelings clogged my thinking and what I could see. I was upset. I was not being a very good mother. I yelled at the girls, I said things that should never leave the lips of a mom. I failed. I struggled. I thought that Lydia was more than I can handle. I just did not understand how it could be so hard. God must have mixed up and given the wrong child to me, I don't know how I can go on another second. Brutal tough thoughts for any mom to deal with. I love Lydia, and it is not her at all. The extra junk was getting to me. I was giving in to this emotional feeling and forgetting about the blessing all of my children are, forgetting about the very special calling God has given me.
I found myself laying on my bed just crying. Screaming out to God...WHY?! I don't understand, I can't possibly put another foot in front of the next. Really? Where are you? Why do I feel so alone? I am angry and upset. I just don't feel like I can go on. And not only do I feel terrible about my situation but I made it worse about how I treated my children and what I said.
Grace...God gives us grace. I failed as a mom. I was stressed and strung out. I grabbed Ellen and we prayed. I told her that I messed up greatly. I told her I was not living in God's Word and I allowed sin to clog my mind and my mouth and the decisions I was making. We prayed and we talked. It was in that moment that there was a blessing beyond what I could have asked for. God gave me grace. God told me that it was OK. I am not expected to be perfect, He loves me the way I am, broken and battered. My daughters are going to see that. This is a tough long journey. I do, however, have to work towards controlling myself and stopping it. But He gives me grace, He says He will hold me and love me no matter what. That is exactly what I wanted to do with my children. No matter what, I will love them. I will chose to love them. I will put my selfishness aside and love on them continuously. I will love them unconditionally just as my Savior has done for me, I don't deserve that, but He has given me that.
I was sobbing as we got into the car. How was I to lead a Bible study now? I am a broken mess. I can't do this. But it was to late to cancel. I prayed and I prayed. I just asked that God's Will be done. I asked Him that I would live in His presence today, that I would change this horrible attitude and start treating my children with respect and love and showing Christ. I just did not understand how I could lead this, not today. I was (am) still consumed with Lydia's eating. And yeah, she was not eating yesterday. I could not even force it down her throat.
I got to my friend's house and we started talking, encouraging and just holding one another. As the rest of the girls piled in, the blessings were just flowing. God has given me some amazing woman to talk with and walk with on this journey we call faith. It is hard, and it is OK. I need to not continue on this path of being out of control and beating myself up for not being perfect; but I need to embrace where God has me. I need to let go and let God. It was such an amazing moment. I was so sure that this was the wrong thing, and God held my hand, made me go and showed me that I truly do not know what I need, He knows me every need. He knows what I need the most. Praise God. Thank you to the wonderful ladies who I am able to walk on this journey of faith and grow in His love, grace, mercy, and knowledge.
I still struggled trying to feed Lydia. Trying to push down her throat, doing anything I thought to make her eat....get calories, put on weight. However, I soon realized that just like the rest of the family, she is sick. She threw up a couple of times and the sparkle in her eye is temporarily gone. She can't eat, her body needs to rest and fight off this. I need to back off. I need to let her be sick. This is normal, babies do get sick and she is no exception. I forget that often times. In the midst of all of her medical problems, she is just a baby (OK...a toddler) and they do get sick and they do change. This is normal...she is no different.
So what is eating at me? Why am I so obsessed? What is happening to me? When Eric came home last night we sat and talked for a long time. I am OK if the tube needs to stay in IF they give me VERY good reasons. My mom instinct is SO strong to take it out. I feel like we have prepared what we need to to overcome this. But what else is there? As we began to talk more and more and dissect our feelings, I think we are both feeling very anxious about the reason why they want Lydia to come in. Our dietitian just e-mailed me and said we needed to see them...no explanation. When I asked why, she did not return my e-mails or my phone calls. When I called the nurse, six different times, they just said they think it would be best. Why? There were no tests taken by the GI doctor, just a height and a weight. What are we missing? Is our daughter OK? This is clearly what is eating me up. You can't just tell me my daughter needs to be seen and not tell me why. You can't just ignore a patient and expect them to be OK with it. This is unacceptable. I am going crazy. My husband and I have both become angry about this. This is not right. What is the reason for the appointment? If it is to take the tube out, tell us. If it is to tell us the tube needs to stay in, tell us that. If it is just a check up, tell us that. If there is something else there, we need to know.
Eric is calling the nurse today to see if he can get some more information. We need to prepare ourselves for whatever it is that we are missing, if anything. Not necessarily about the tube, but what else is it that we are missing? A doctor just does not call for an appointment without a reason? Surely there is something there that we are missing. This is the root of my anxiety. This is why I am stressing out, why I am consumed, this is why I am not who I am...I am nervous, scared, anxious, fearful, excited...you name it. Why did I not recognize that beforehand? Why did I have to get to a point of crazy before I could see that? It is not because of her diagnosis that I cannot handle things. It is not the Down syndrome or the medical issues, it is the part of dealing with the doctors.
I do have to say that we have been so blessed that this really is the only specialist that we deal with that does not look at our daughter for her. He looks at her as a diagnosis and a science experiment. He looks at what is easiest for him to treat and not what is best for her. It is really hard to trust his suggestions and recommendations when there is a lack of trust to begin with. I know God has it under control and I know I need to just trust in God, but it is hard sometimes. Sometimes it seems much harder too when it is something that I am so close to. I am really the only one who feeds her....I feel like it rests on my shoulders. I am her voice, I am her advocate. But really it is God....not me. No matter what it is, God is good and His Will will be done. No matter what, worrying and being anxious will not change what will happen. So there is no reason to waste this precious time forcing food or making myself go crazy.
I am continually getting taught things will not work out the way that I want them to, they will work out according to God's plan. However, whatever the road is that I need to travel will be well worth it. Sometimes I need to have my blessings in the form of suffering, tears, fears, or joy. But whatever it is, God has it worked out for HIS perfect plan. It is according to Him and not me. It is so tough, but so rewarding. And because of the journey God has given to me, I feel joy in a pure sense. I understand the simplest of things that can be pure joy. When Lydia switches a toy from one hand to the other, how hard that is for her and what an accomplishment that is. A smile and how precious that is...how she had to fight to be in a spot to have a smile on her face. But I also understand the suffering and probably to a greater degree. I understand what it is like to continuously hold a child down for a blood draw, to watch her turn blue and wonder what the next seconds will hold, to have her sick and wonder who can handle the depths of her medical issues. I will have to watch her continuously over come stereotypes and challenges because of her diagnosis. But what blessing that is. To understand those pure highs and those hard lows. God chose me to experience them and chose me specifically for this journey. It has been very comforting to know and understand that in the past couple of days.
Seeing a friend unexpectedly rounded out yesterday. Just to see her smile, her love for the Lord and the joy she has, it was such an encouragement to me. When I went to pick up Ellen last night, it was so awesome to see a friend, a sister that I was not expecting. What a joy that was. It was awesome to see the girls play with friends that they miss. What a great blessing. Thank you God for these unexpected blessings that You give to us when we least expect them, but really need them.
Some times I feel like I cannot go on, I cannot handle where God has me. Then I am reminded that I cannot, but God can. I need to be patient and wait on Him. That is really hard for me because I am still a very impatient person. But God has blessed me with wonderful children and gave me exactly what I needed. This too shall pass. Thursday will come and go and whatever the decision is, we will live with it and make the best of it. I cannot ignore this instinct that I have, so I must stand firm in what I feel is the very best to Lydia. However, I need to remember to have open ears and an open heart. I need to be willing to allow another opinion without backing down on what I feel is the best for Lydia.
The unexpected blessings in life are some of the most joyful moments. I thank God for giving me these!