Hard Days

Sometimes I am devastated about what happened to Virginia and what she has to go through on a daily basis. She is my heart and soul; I am her voice, her arms, and her legs. I feel like on some level I must live in a state of denial or I couldn't get out of bed each and every morning. Virginia was robbed of so much.

People often ask me if Virginia is in pain. I don't think she is in constant pain, but she struggles through so many things each day and is hurt frequently. Every bite of food is a difficult for her. You know when you swallow the wrong way and almost choke? She does that several times a meal. She gags several times a meal as well. It takes her about 45 minutes to eat a small amount and it is hard- we constantly toy with the option of a feeding tube, but are just not there yet.

She accidentally bites her tongue about 20 times a day, and frequently it bleeds. Her hands grip so tightly at times that she gets blisters from her fingernails digging into her own skin. She has an incredibly difficult time sleeping because her body can't hold still. She usually cries for a long time going to sleep because she is so tired and so frustrated that her body won't relax. She is usually awake by about 4 am; today, she woke up at 11:30 (as in pm) and was never able to go back to sleep. As her mother, not to be able to help her is devastating and heartbreaking.

I often wonder what she thinks as she watches Wills play. It used to be pretty easy for me to carry her up the ladder and go down the slide with her or swing with her. She was small enough we could chase Wills around the playground. But she is taller now and very difficult to hold for long periods of time. It is much harder for me to see that she is included in things.

Virginia can't talk, can't point, can't sit up, and can't roll over. She has almost no purposeful movement. I cannot for one minute imagine the frustration she must endure on a daily basis. There are times (like tonight as she struggled to eat dinner, choked down all 5 of her medications, and cried for an hour before she was finally able to hold still enough to fall asleep) when I am devastated. Physically, her life is very hard. As I listen to her cry, the anger builds up in me at the individuals who caused this pain. It is so unfair and seems impossible that the void of negligence could create such real and tangible suffering.

So, am I in denial? Do I ignore a little of what she goes through every day in order to go on? Am I immune to the crying? Maybe a little bit. If you think about it all the time, pain will eat you up. Bitterness will poison you. It doesn't help Virginia at all if her mommy is so sad that she can't get out of bed. All I can do is love her and try to infuse as much joy as I possibly can into every day. I can tell her that because of her suffering, one day she will be so glorious, I won't even recognize her. (But, I always ask her, can we be roommates in heaven?)

Those of you who know me well would agree that I usually dwell in my emotions. I cried in grief and rage several times a day for the first few years of her life.

But by God's grace, I have made some progress in controlling my emotions, not in letting them control me. Of course I have the right to be sad. But what good does it do? We all have things to be sad, angry, even outraged, over. Of course there are still days when it is hard to get out of bed and hard to wrap my mind around what happened to Virginia. It is overwhelming to realize just how much her life has been affected. But when I allow those feelings to get the best of me, I am usually the one who suffers.

Virginia has taught me to look past suffering and seek joy. She has more joy than anyone I know. Nobody has more fun at a dance party. No one laughs more while playing hide-n-seek. No one enjoys a good batch of banana pudding or a petit four more. No one is happier on a walk. No one squeals louder during the funny parts of movies. No one smiles brighter than Virginia. Period.

God doesn't promise us tomorrow, or five years from now. When my mind wonders how long I can do this, when I worry about how much suffering and frustration she can take before her happy spirit is crushed, I just need to stop and think about today. What can I do this minute to love her, love Findley, love Wills, and love Eliza?

If we embrace it, suffering never leads us away from the cross. It leads us to it. Virginia will never be too content on this earth because of how she suffers. She will never get too comfortable here and confuse it for her eternal home. Findley and I won't, either. Yes, I wish that things were simpler for us. I wish I could chase Virginia across the backyard. I wish she could eat the waffles I make for Wills on Saturday mornings. It hurts that she is left out of things. It hurts that she cannot experience the good things of this earth more fully. But her suffering and ours reminds us not to get too comfortable here.

Virginia knows what she faces every day and is still happy. It isn't that she doesn't understand her impairments and that's why she is happy. She has no cognitive impairments. She has known for a long time that she is different and that we all get to enjoy things she doesn't. She is choosing to have joy in a place where so many others would be bitter. Her joy doesn't come from a good night sleep or being stuffed from a good steak dinner. She's not happy because she's the star of the play or the fastest one on the field. Her joy comes because she knows how to love.

Today was a really hard day. I was tired, making me less patient and, honestly, less able to have perspective on the situation at hand. Virginia was tired, so she was fussy and it was harder for her to eat and be content. It was cold and dreary outside and I struggled to think of things to do that Virginia would enjoy. I was reminded a thousand times today of how hard things are for her and how isolated we are from the rest of the world.

Somehow we made it. She is asleep and hopefully I will be soon. Tomorrow is St. Patrick's Day and and I told the kids we were having a green party. We will wear all green and make green petit fours. Then we are going to watch The Princess and the Frog (because frogs are green and we haven't seen it yet.) Virginia is very excited because there is nothing she likes better than petit fours and a new Disney movie. I hope that tomorrow is better. I hope I can make the choice to see all the we have instead of all that was taken. I am getting better at it, but on days when Virginia seems to suffer so much, it is hard not to let my emotions get the best of me. But I only have to look as far as her face and her beautiful, thousand-watt smile, and I have all the motivation I need to keep going. If she can do it, so can I.

"We love because He first loved us." 1 John 4:19 "Therefore I tell you, do not worry about your life, what you will eat or drink; or about your body, what you will wear. Is not life more important than food, and the body more important than clothes?... But seek first his kingdom and his righteousness, and all these things will be given to you as well. Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own." Matthew 6:25-34 P.S. I have been thinking a lot about why all of a sudden I am willing to share what we are going through publicly (through this blog). I have always been willing to share the burden with friends and family (probably more than they wanted at times), but suddenly I am acutely aware of the suffering of others around me. I pray sharing my suffering will bring comfort to others who are in the midst of trying circumstances and that that would become one of the redemptive aspects of our story.