This past weekend we had the privilege of getting away as a family. Those days are very rare for our family. It takes a lot to pack up everyone, money is tight, and Lydia is just a wild card. She does not travel well, and often times it is so hard on her that it is not worth it.
As I was laying on the bed, my husband sleeping, my older girls sharing the Kindle, and Lydia sleeping; I just thought, we never get away from our real problem. Lately, we have really been struggling with Lydia and her eating. I know, I have said that over and over and over. However, this is a real problem for us. This is challenging and quite frankly it is destroying me personally in some aspects.
I wanted to write this entry today really for me. I need to be able to put these things on the line and hopefully recharge myself a little; knowing, with God's help, I can tackle this challenge too! I also think that it is important to share these struggles with others. And it is important to remember, that her eating problems are not because she has Down syndrome, some may complicate it because of that diagnosis, but this is because of her EA (esophageal atresia) diagnosis.
Getting up in the morning feeding is already on my mind. Once she wakes up we need to start to try to get fluids down her. She does not have a sense of hunger (I do believe we are slowly getting there) and therefore drinking and eating does not come naturally. And to complicate things more, she was tube fed for the first year and a half of life. She drinks, on average, 8 ounces of a pediatric drink a day. Her goal, when she was followed by GI, was 16 ounces at the bare minimum. She does not drink water or anything else. And believe me, we try. We have spent a lot of money on different cups and straws and smoothies and juice and freezing things and whatever else we think may have work. So far, we are rejoicing with this 8 ounces (some days more and some days less).
Then it is time to get in the kitchen, although most times I am dragging my feet. I don't like this part of the day. I have to prepare her medicine and her food. I guess about what kind of food she would like to eat. I allow her to choose if she will. I have to try to guess if we will be on baby food or if she will allow some kind of table food. Just because it worked yesterday, does not mean that it will work today. Her staple has been corn and chicken. So it is a constant guessing game.
We start off each meal with a prayer. I pray for God's strength because I cannot do this on my own. When I try, it is a total disaster. I completely lose myself and turn into someone who is not a good role model for my children at all. I try to make the prayer last for as long as possible, but I know at some point I will have to try to feed her.
Sometimes when I present the first bite she takes it, but most times it is a fight. We use brushing and wake up exercises. We try to use music and games and toys to get her to eat. We bribe her. We yell. We play hide and seek. We wear silly things on our heads. We dance. We pray. We cry. We bribe. We run around the table (I guess it keeps me fit!). We make up songs, we use our other children, we use strangers we basically do whatever it takes to get her to eat.
We have found that we are shifting from it being a focus that she needs to eat because she HAS to gain weight, to more of a thing we have to do because she needs to eat. I think it is exhausting. Just once, I would love to sit down, present the spoon to her, and just have her eat. I would love meal time to take only 20 minutes instead of hours. I HATE PLAYING THE GAMES, I AM EXHAUSTED. But that is a huge praise that her pediatrician has said he is super happy with how she is growing, her cardiologist is happy, so something is working!
When we are out to eat, I find myself longing for that other family who can sit their child down and watch them eat. I would LOVE the mess, the change of clothes, the throwing of food as long as they would eat. I long that my two and a half year old daughter would eat something other than baby food. Not only because she should be on table food like every other child, but it is expensive. I try to make some food, but there are certain foods that she will eat that I make and others that she will only eat canned baby food. Sometimes I find myself getting jealous and that is just not a good thing at all. I really wish, at times, we didn't have this battle.
But then I remember, very vividly, there was a time while I was driving in the parking structure of the Children's Hospital. I was talking with my dad and he was very concerned about this feeding tube thing. That was new to all of us to deal with. He wondered if she would ever eat. He wondered how she would eat. Then I have to take a step back, this is a journey, this is a process. We have already accomplished so much more with her than what we thought. We even transferred doctors because she had a doctor that told us she should be in an institution, she would never eat on her own or amount to much. Look where we are at. Praise God!
There are days like today that we experience small victories. Lydia would not eat this morning. I had the opportunity to hold Ellen and snuggle with her. I had the opportunity to show my children how we can accomplish things with God's strength. Most mornings I fail, I try to do it on my own, but today, today I relied on God's strength. It took a long time, we played games, we used music, and watched videos, but she ate her entire bowl. We all walked out of the house with our heads held high in victory through Christ.
But see it does not stop there, because lunch and dinner follow too. There are also snacks and trying to get milk in between the meals. And if we wait too long to feed, she gets all out of sorts. She does not feel that hunger, she does not have a stomach like us. So we have to walk that balance. It is hard sometimes, very hard. That means always planning ahead, carrying food with you, making sure you have what you need to meet her needs.
It is a long tough journey for me. Some of you reading right now may have even tougher journeys, may have more difficult things in your life. However, this is what is tough for me. The hardest thing is, she needs to eat to live, to grow. Sometimes it is like watching your child die right in front of you. All I can do is offer and try to feed her, I cannot make her eat. We try, we give it our all, but she has to do the eating part.
I have to say that more and more I am convinced it is a behavior. She is just sitting there smiling and laughing at me as I am trying to retrain myself from walking over the edge to completely crazy. I feel like she knows and understands. She knows and understands so much, why would she not be able to understand this? She may not know why she has to eat, but she does understand that when she is in her high chair she needs to eat what is on the spoon. This adds fuel to my rage in feeding her even more. And then the balance of don't push too hard because it will become a psychological issue. Whatever happened to "Listen to your mom." I battle the issue that if I say you are going to eat, you are going to eat. These are all uncharted waters for me!
Feeding tube. Yes, we took that out and against medical advice. However, life has been much grander since. And the reason why it came out was because it was twisting her small bowel. She had to be put on medicine for constipation and she was in constant pain. Her tube leaked and her skin was completely broken down. If we fed her by tube she would not eat by mouth. She actually has been consistent in weight gain with her tube out. So I do stand behind that decision, and we knew when she had it out, that there was a chance it might have to go back in. We are not at that point, but I do think it was one of the best decisions to take the tube out, for her.
She is gaining, or at least where her doctor is happy. She is growing well and developing like a champ. She is very healthy. So there is no talk about putting the tube back in. However, my sanity, it is gone! I hate feeding her. I hate the games. I abuse food myself because she won't eat. It is a lonely road. Most people tell me I am crazy because she looks so good. I am crazy because she looks good, because feeding has been my nightmare, my life, my secret that I hate.
Then when you are out in public and people tell me how small she is. Oh don't get me started. While I know she is exactly where God wants her, that comment casts enough doubt about if I am doing enough. That comments casts enough doubt that maybe there is something more. And this crazy vicious cycle starts up again. Over and over and over. UGH.
I love food for myself because it does not talk back to me and it provides some immediate comfort. See it is tough to talk to my husband about it because he is just as crazy as I am. He has no answers or suggestions. We rely on the expects, but they really do not understand unless they are here feeding her. As soon as you think you have a victory with something new, as soon as you think you found that one thing that will work, she changes, she no longer likes it, she won't use that. She has changed her mind that she does not like that technique anymore...no warning, no indication, you are left to find another way to feed her. The professionals have great suggestions, but she is just her own monster because of her very unique anatomy. It has been a struggle for all involved, I think. But we admire our team, they continue to work with us and give us suggestions!
So the cycle goes on and on. Yes, I am super thankful that she is where she is at. I understand this is a process and a journey, that we may battle this the rest of our lives. At this point, I feel completely defeated. I feel exhausted and angry. I don't understand the plans and why we must endure this. But I know there is a plan, I know God is holding us; He has shown us small victories here and there.
I guess this struggle would be much like a disability that you cannot see, a chronic illness that does not present itself all of the time. It is a struggle, like any other, that you constantly deal with. It is a problem where there is not a fix. It is something you must continue to battle and fight. You give it your all and trust that God will carry you the rest of the way.
Sigh.....it is time to feed her once again. What should I feed her? What flavor will she like? What games will we have to play? Will this meal be a success?
And yet, I continue to battle this vicious cycle because she is worth it, because she is my secret that keeps me going. She pushes me to the end, but in the end, she is the secret that makes me go. She is nothing short of a miracle and I don't forget that.