...I think I'd like to get off.
Today has been a hard day.
Let me start by saying--and reassuring you--that Lilly is doing great. She is amazing and is making fabulous progress in her recovery. Bella, too, is amazing and is doing a great job of rolling with things here, despite having minimal understanding of what we are doing and why, showing amazing amounts of trust and--even though we sometimes expect even more--great amounts of patience with this whole experience. These girls are amazing. My older two back home--according to Nana and Pap Pap (who are also wonderful)--are amazing too. And I have an amazing husband who is doing his best to make sure Lilly's medical needs are being met well, care for Bella at night, stay plugged into work as much as possible while we're away, and make sure I am doing ok through this experience.
It's this mama that is having a hard time.
A few weeks ago, I alluded to a yet-to-be-written blog post about feelings of guilt and feelings of failure.
Those are two huge emotions. They plague me frequently. Especially lately.
Today was one of those days. Because Bella is pretty quickly bouncing off of the walls in this hospital room, I have felt compelled to get her out of the room to the play room or to roam the hallways or the sidewalks outside when she and Tom are at the hospital during the day. As a result, I have been missing much of Lilly's care and the medical discussions surrounding it. Tom, being a medic, is the better one to take part in these discussions (even though I like to pretend I understand what they are talking about). So I feel like I am not an integral part of Lilly's care and surely Lilly must feel like her mama no longer cares about her the way I used to. Those feelings were affirmed today when, upon my return with Bella after wandering around the hospital for a bit, Lilly declared that "I like Daddy better than you. And I want him to sleep here with me tonight. I don't want you."
Ouch.
Yes, I'm the grown up, and I totally knew what was behind those words. I didn't outwardly react to her words, but simply said "well, I still love you and am glad I can be here with you even though it's harder for me when I want to help you AND Bella." But her words cut into my heart. (side note: I am sleeping at the hospital tonight...as Bella and I were packing up to head out for the evening--and I had reached a place of peace about that prospect--Lilly realized she didn't really mean what she had said and was afraid NOT to have mama here.)
At the same time, when I am in the room and Lilly is needing my attention (and that of her daddy and all the nurses and a crowd of others--as was the case today when her O2 sats rapidly fell through the floor and she was in sudden, excruciating pain) I feel like poor Bella is left to sort of sit quietly in the corner, eating whenever we remember to feed her and whatever we manage to scrape together for her between cafeteria runs and snack bags and the many leftovers from Lilly's tray that she barely touches. It makes me feel like Bella surely feels like a second class citizen in this family at the moment. Even though Bella cannot articulate her feelings in the same way that Lilly can, her nonverbal communication of her feelings is increasingly clear to us.
And in the background of all of those emotions are the ones I feel when I think of my other two kiddos at home whom we left behind for 2 weeks just the month before last, and who are, once again, left at home without mom and dad. Not to mention the feelings of guilt associated with expecting SO MUCH of our extended family during these frequent occasions.
Hospital living is hard. Parenting virtual twins--one of whom is still learning our language and developing age-appropriate skills and behaviors--is hard. Being away from older children is hard. Commmunicating well in a marriage relationship through all of these circumstances is hard.
And so it is time to switch gears...riding the rollercoaster of guilt and failure is no fun and is just not right. Instead, I am will choose to do as Paul instructed: "Rejoice in the Lord always...do not be anxious about anything, but in everytthing, by prayer and supplication, with thanksgiving, present your requests to God. And the peace of God, which surpasses all understanding, will guard your hearts and your minds in Christ Jesus." Philippians 4:6-7
So let me express my thanksgiving:
Lilly is recovering so very well. Her pain has been managed really well (love the pain ball!), she is able to sit up with a little dizziness, and today she even stood up and took a few very small steps toward me. She had her chest tube removed today and is slowly being weaned off of her O2--all wonderful steps toward going home.
Bella is doing better than I could even have imagined with all of this. And she is totally charming all the nurses. And our ICU room us directly across the hall from the play room. How awesome is that?
The older kids are faring very well! And I love that our family members are getting to know our kids so much better by living with them for extended periods, especially because the US Air Force is quite likely going to move us far away from family once again in the next year or two.
Tom and Bella have a wonderful hotel room suite tonight a a very reasonable cost thanks to the Ronald McDonald House discount...still hoping for a room at the Ronald McDonald House at some point but the waiting list is long and not many folks are being discharged to open up space.
Yes indeed, my heart and my mind are both in need of guarding in Christ Jesus. Very much so. My very wise Mom once told me "The years are short. It's the days that are long." May I look to Him first thing each day and throughout each moment of these long days.
"But I will sing of your strength; I will sing aloud of your steadfast love in the morning. For you have been to me a fortress and a refuge in the day of my distress. O my Strength, I will sing praises to you, for you, O God, are my fortress, the God who shows me steadfast love." Psalm 59:16-17
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