There are times through this journey that I have been able to pull myself together and be strong. There are also times when I haven't been able to pull myself together and have crumbled to the floor. This weekend was full of tears for me. I sobbed myself to sleep on Saturday night and was full of regret on Sunday morning when a migraine stopped me from joining Shawn at Lincoln's burial. The last 48 hours have been full of emotion, I can't seem to hold back the tears. Nothing specific happened to start the emotional roller coaster, just a build up of everything I guess.
I feel utterly and completely overwhelmed lately. This morning I laid in bed and asked God to give me the strength to get out of bed. One day at a time feels like too much right now, and instead I ask now for one hour at a time. I'm exhausted, all the time, even after having a good sleep. I know that this is not forever. Hope will not always eat through a tube and need so much constant care. Life will not always be so isolating and one day I'll be able to return to being more "social".
I like to be independent, and I prefer to do things myself (surprise, surprise!). Maybe it's just controlling, but I want to do it myself so I can do it my way! At this point in time, I find it almost impossible to take care of Hope and be able to watch busy Sadie at the same time. I usually fail to brush my teeth, have a shower or feed myself. Thankfully, my friends have been great and many kind souls have been taking a turn at our house to help me. I wish I could do it on my own, but I simply can't.
I am now struggling with my milk production. I often fail to find the time and desire to pump and am falling behind with Hope's demand. I am using more of my milk in the freezer than I'm returning to the freezer. This makes me fear that Hope will have to have more formula mixed into her feeds and could cause her to vomit and not gain weight. I find pumping, cleaning the bottles, mixing the feeds, thawing milk and everything else involved to be too much some days. Every ounce of my being wants to throw in the towel, the mastitis set me back and damaged my production on one side as well. I'm not sure if I'll make it until the second surgery but that is still my goal. After that, Hope's digestion will be better and she'd be more likely to tolerate the formula.
We had a lot of discussions this past weekend and one thing stood out through each topic. Mental health outweighs money in every aspect. I think it would be good for me to have some time to myself to do the things I need to do and to get out of the house for some respite. Although we were approved by Sunlife to have our night nurse, we only have $10,000 worth of coverage. That sounds like a lot, but at $70 an hour, it will run out in approximately 20 days. We are looking to privately hire a nurse to come over one day a week to stay with Hope while I take the day to run errands and maybe have lunch with a friend. I think this will have a huge impact on me and will restore a lot of joy in my everyday life. It won't be cheap, but we're not planning to retire in the next 10 years, so we have time to make it back!
Today all I humbly ask is that you pray not only for Hope, but for Shawn and me as well. I feel like I'm reaching my limit, and I am completely drained and feel like I have nothing left. The journey is far from over and the road still has bumps ahead, and I need the strength to make it through. Please pray that I will have the social times that I need, the time with Shawn that I need and the time with my girls as well. I want to be a good mom to them both, but find it hard sometimes to care for them both the way I would like to. I feel sorry for Sadie, as she is often left in front of the TV to care for herself as I work to take care of Hope. Many days I am grateful for Curious George!
I know that God has a plan for my life and I know He has a plan for Hope and for my family. Right now it is all difficult to understand, but I know it's true. And, thankfully, I know that He will give us every bit of strength and patience that we need. I miss going to church each Sunday and to our Bible study during the week. I miss being recharged spiritually and the support of my christian family. In my ideal world, we'd be able to find a nurse that goes to our church who would occasionally offer up on Sunday so we could have someone to watch Hope while the rest of us went to church. Soon enough the fall will arrive, and Hope will receive her second surgery and afterwards we'll have the freedom to do so much more as a family. Life will feel more normal again, but today it feels like a long way off.
At the end of the day, however, the exhaustion, constant care, social isolation and emotional strain is a small price to pay for the life of our little girl. I am reminded daily that we are blessed beyond belief to have little Hope at home with us, growing and doing so well. Today, as I think of our friends burying their little boy, my struggles seem so trivial and pale in comparison. No matter how hard this road is, I need to be thankful for what we have and cherish little Hope every moment of the day.