Ugh...sometimes it is so good to be totally consumed. I would love to be totally consumed in the Word of God every day. I would love to be totally consumed in fellowship with brothers and sisters in Christ. I would love to be totally consumed in worship. However, my life seems like it does not allow for that. It seems like other things get in the way!
My totally consumed that I am talking about right now is Lydia. Some days it seems like it is more than I can handle. That is not a complaint, but just being honest. The road is not always easy. The road is not always one that is fun. And usually the road is not one that many understand.
I LOVE Ellen and Allison. I am consumed in their lives. I love them, I would do anything for them. However, even though they are younger, they are self-sufficient in some aspects. They can pick out their clothes, they can feed themselves, they can get themselves ready in the morning, they can tell you what they want, what hurts, how they feel.
Lydia is a bit different. I know she really is no different than another baby, because many babies could do these things. However, her needs are heightened more on the fact that I have to be able to account to a doctor many times. Often I have to tell someone what I think is going to happen based on a mommy instinct. I have to sort out from her several different complications which one is being affected or if it is normal baby stuff. There is making sure you fit in physical therapy each and every day so so can gain the strength that most normal children have. You have to work a little extra to help her to the next step.
Now don't get me wrong, I love her more than anything and she brings so much joy to me, however, I have been totally consumed. Her eating lately is what I have been consumed by. I feed her, she eats almost all of the time. I bring her to the doctor and she loses weight. Ugh. We go through that again and she loses. She has lost two pounds since June. This Thursday is the day we asked for the feeding tube to come out. Why such a big deal? If I felt that it was in her best interest to keep it in and keep feeding her from it, I would. However, I don't think that it is. I am probably thinking worst case scenario with her GI doctor, but we have a history like this. Who just calls you and says that you need to have an appointment without giving you a reason why? Who just ignores your phone calls and e-mails? I find it very unacceptable. However, we decided to go because we are asking for the tube to get removed. He is a doctor who has never looked at Lydia for Lydia. He has looked at her as a diagnosis and tries to treat her based on that. Does not work. She has not followed the book since day one and she is not going to now. I have a very hard time dealing with someone who will not look at the child for the child, disability or not.
I have been consumed. It has affected me in every aspect of my life. But I keep pressing on. I get frustrated and angry. I get upset and mad. I look at her and know that I need to keep fighting. I pray and ask for more and more and more strength. I pray and ask for guidance. As much as I want to say to keep the tube, there is this overwhelming feeling that the tube needs to be gone. I keep pushing forward on a feeling. Knowing that going into this doctor on a feeling is going to be a fight, a huge challenge.
She is eating, but sickness has struck our house. I am sure the little bit of throwing up will not help her gain weight. But still I try as hard as I can without pushing it on her and forcing it down her throat. But I know that this is the best for her. I also know that if we adjust calories and catch up with her needs, she will gain weight. I am confident in that. It is exhausting. Just being honest. These are the days when I am so thankful for her smile and her sense of who she is. It keeps me going. I am so happy that God keeps giving me the strength and the push. It is not on my own strength that I can do this, only with God by my side. I guess because of that overwhelming urge of getting rid of the tube, I know that must be the direction God is pushing me in.
I would ask that you pray with us. Pray that she is able to gain some weight. I would also ask that you would pray that I would not be consumed with this. Pray that I can get a break and focus on the joy she is and not what I have to prove and advocate for. It is a delicate balance and some days it is easier than others.
So it will be a long week, I am sure, waiting for Thursday to roll around. But I know God is good and He has an amazing plan. I will trust in that and lean on Him. Especially when I am exhausted, feel like giving up, and just consumed with the wrong things. May Thursday bring that light at the end of the tunnel.
Switching gears...the walk was amazing. There were people everywhere. I heard over 1800 participants. It was so cool and very overwhelming. Amazing. We had about 35 people on our team and raised a little over $600.00 dollars. What a great first walk. Thank you to everyone who helped us, supported us....tears were in my eyes most of the day.
We also were able to run into an old friend. When we were in the hospital, we relied on Child Life to help us with the girls as we would transition. We met Erin prenatally and she offered a lot of great advice. Ellen and Allison immediately latched on to her. She came to our room in December to say goodbye. Her family was moving to the Fox Cities. It was sad, she had been such a huge part of our girls life in the hospital. However, she is now working up in the Fox Cities providing support to families. We may get to work with her once again. She was instrumental in supporting the girls and helping them transition so well. It was a great surprise.
We also saw Paul and Ginny, their son was the ambassador last year. He passed one day before Lydia was able to go home for the first time. We met them as we were walking Lydia on the unit. There was an instant strong bond and we just connected. Right after their son had passed, they came to our room to talk and hold Lydia. It was a very neat experience. It was great to catch up with them and remember their son is such a positive way. We never met him, but he did leave big imprints on our lives just from his father's smile.
It was just a wonderful day. God blessed us with cool sunshine and beautiful fall colors. Thank you again.
This journey God has us on is such a neat one. It has its ups and downs. I struggle really hard some days. Some days to the point where I wonder if it is worth it all. I look at her smile and I just melt. This is the choice we must make all of the time. We have to constantly die to self and live for God. We have to remember what He did for us on the cross. He showed us that ultimate price of love, He sent His one and Only Son to die on a cross for our sins. While we were still sinners He died. I am reminded over and over of that and how awesome that is. It is easy to make the choice to love when you think about that. I want to consume myself in love. Love for my Savior, love for my family, love for my church, love for my brothers and sisters in Christ, love for the community I am in. I want to make that choice every day to not live for myself, to not please myself, but to live for God, to live for others. It is hard to chose someone else's happiness over my own selfish desires, but I am so blessed when I do, there is such joy. I am not good at it, but it is at moments when I am totally consumed with something else that God just nudges me a little and reminds me how selfish I am. Love is a choice, it is not a feeling, it is hard but oh so rewarding.
Please pray for Lydibug and her growth, her eating, and her appointment. Pray for Eric and I and wisdom and God's guidance. Pray that God's Will will be done. Pray that we may trust in God whole heartedly and trust Him, no matter what the outcome may be. May it bring God glory and may Lydia benefit from the decisions made. Praise be to God.
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