I just wanted to preface this journal. This is raw feeling and emotion, I am doing this to just let some of the stuff out that I have been keeping inside. I am not seeking anything from this, I don't want anyone to feel sorry for me, I just really am doing it for me; just to let it all out. These are really my deep personal thoughts today. After a stressful weekend and a small break down, I just need to release. I struggle with these posts because I really am not seeking anything or trying to make anyone feel sorry for me or anything like that. But as much as I have been fighting the urge to sit down and write, I feel God pushing me to continue to share the journey He has set before me.
With that being said, it was a rough weekend. I just came to a point where I knew the behaviors and patterns I have been doing are not healthy for me or my family. I have been playing the pretending game. I pretend everything is going good, but most days you can find me rocking Lydia and I am sobbing. I attempt some housework or to make a meal or play with Allison, but stress and this overwhelming feeling of I can't do this anymore, I am not cut out for this journey comes over me.
Lydia's eating has gotten the best of me lately. I am mom, it is my job to feed my child. I worked so hard for over a year to pump milk for my baby because I believed it was the very best for her. I wanted to feel as though I was doing something for her so I pumped, I endured painful infection after painful infection. Even when the stress was high, I still pumped. I had a HUGE support group cheering me on. My husband was super supportive too. A special lactation consultant was one of my biggest fans along with some awesome nurses. But that was my desire to feed my child to see her grow and thrive through all she has been through. I was her mom and I was suppose to be providing her food.
As we transitioned to eating solids, I have become the primary feeder for her. I have listened to our speech therapists, doctors, nurses, read things, I am part of support groups, to know the very best for her. Day after day we teach her to eat, I try to be as patient as I can, I try to nourish her so she can continue to grow and stay strong. She did very well.
Then we had a time when she was not growing so well. We worked with all kinds of different people to get her to eat. If you ever enter our house at a feeding time, you will agree that I have gone off the deep end. I make bird noises, sing, dance, play with toys, wear silly hats, play peek a boo, anything to get her to eat. I use my other girls to help distract her so she will eat. My husband helps when he is home. It has become a family affair.
However, it is taking a toll. The ups and downs of feeding her. The ups and downs of watching her not want to eat. The ups and downs about how the day will go. With Lydia, she is fed more often because of her new anatomy. It is hard to continue to feed her and watch her struggle. It is hard to watch her play games, it is hard to watch her not drink. Knowing that a lot of her lack of drinking is because of medical problems.
Talking with the doctors and specialist, they always seem to have a conflict of opinion. So it is my job, and my husband's, to sort through everything and figure out what works and what does not. She is anything but a typical child and she likes to walk her own line, I think as most kids do. It is frustrating though when the medical books are written not for your child. It is frustrating. So we try different things and some will work for awhile but then you are left guessing.
You want the very best thing for your child, but you are unsure. The last couple of weeks have been a huge struggle. Before each meal I pray with her. "God thank you for another time to feed Lydia. I pray that You use this food to give her nourishment and allow her to grow. I pray that you allow her to eat well and give mommy the strength to continue on this path. But most importantly, I pray that Your Will be done. If it is the Will to be on the feeding tube, I pray You make that clear, if it is to eat orally, again, I pray you make it clear. Thank you for all of Your blessings. AMEN." But time after time I am still left confused and frustrated. I am unsure of what to do. I am her mom, I am suppose to be able to feed her.
On Saturday we decided to pull back on the amount of food she was eating and see if that would encourage her to drink a little more. She ended up drinking less than 2 1/2 oz and eating only about 20 bites of baby food. FRUSTRATING! So we decided to put her on the tube. She has lost a little weight because she was sick and we want to stay on top of that. We are not sure what is best and she has not had the feeding tube for "feeding" purposes for a long time. We hooked it up and she just kept on throwing up. NOW WHAT? Really, we are keeping the feeding tube in as a back up and we go to use it and it makes her sick.
So we are back to the drawing board to see what to do next. Another theory about what is going on, but no real answers. It is getting frustrating. Who do we call? Who can we talk to, it is a weekend. On Monday I will spend my day on the phone, trying to just take care of Lydia and pushing Allison aside once again. I am sick of doing that. I am sick of treating the other girls as if they don't exist. I am sick of not being able to clean my house or make a meal for my family. It is bad enough that I feel locked in my house to keep Lydia away from germs, now I am just taking care of her. I look around my house and the mess it is and feel completely helpless. Not only do I feel like I am a failure at taking care of my child, but my house is a mess, my other child is being babysat by the Little House on the Prairie and I am a mess.
I wasn't cut out for this. I never asked for this. We just wanted a third child. We prayed over this child and though we said a healthy child I don't think we ever entertained the thought of an unhealthy child. Why us? Why can't we get a break? Why can't it just be normal? Haven't we suffered enough, can't it just be easy for a little bit? Why can't you come and allow her to feed? What am I suppose to be learning from this? Are you still there? Do you even care for me? How can this be for my good, I am making myself crazy.
The one thing I loved about being saved is that the Holy Spirit lives in me. I have these thoughts and then I think of the many blessings. It does not always take away from what I am feeling, the anger I am feeling or the frustration, but it helps. It allows me not to dwell in that place so long. However, since I have kept this in too long, it is a bit longer process of releasing this time.
I remember a time not too long ago that I would have loved having this trial as I sit by Lydia's bedside not knowing if she would live or not. I would have loved this trial because she was eating...something I thought that she would never accomplish. I would have loved this trial because we were in the comfort of our own home and not in a hospital surrounded by machines. Isn't it funny of the things we wish for. If we could just absorb the moment and understand that it will not last forever, that God is walking through this trial with us, that He has not left us, and as crazy as it seems, it will be for our good. Those are hard things to accept when you are in the trial. For me too, it is hard to just let go because I still want to control things. In the hospital I think that I did better because there were other people there telling me what to do, most of it was totally out of my hands, and I was focused on the task at hand with little distractions. I don't have that luxury now (never thought of that time as luxury!). I also feel like it all rest on my shoulders and it does not. I do not have to cary that burden by myself.
I know that the Lord is still teaching me and pruning me and working on me. I am struggling and that is OK. I am not a perfect mom and I don't have any of the answers for what is going on now. I need to continue to be in prayer, in His Word, and embracing the moment. I need to to continue to count my blessings and do the very best that I can. But it is OK to admit that I am struggling.
I realize that this situaiton is far beyond what most people can understand. I don't need people to understand, but I need an ear to listen, a word of encouragement, a Bible verse. I cannot do it alone. A hug or a friendly smile is sometimes what is needed to change a day. I need to remember that as I try to be the Hands and Feet of Jesus. I need to continue to try to look beyond my circumstance (it has been really hard for me as it has totally consumed me) and be the Hands and Feet of Jesus for other people. It does take a village to raise our children, we should be lending a hand to help one another out. I pray that I am able to do that more and more.
I know that my tomorrow is held by God. So I need not worry. Can someone please tell my heart that? I care about her so much and I would do anything for her. I would do it until I can't. I felt like I was at that place this weekend. But talking with my wonderful husband and just being open to God, I feel like I can pick up the pieces and attempt again. He is my strength. I don't understand what we are going through and quite frankly I do not agree with it at all. But I know He is walking through it with me, He will not leave me, and no matter what I think, He has my best interest at heart. His ways will not make sense to the world, but His way is the only way!
Please continue to pray for our family. Specifically for me. I am struggling and hurting right now. But I know He is holding me and because of that I can continue to put one foot in front of the other. As I wait for the doctors to return my phone calls, I pray we are able to get some answers. I pray that I can do the very best for my daughter!