Grateful But Grieving

The morning light is bright and diffuse, the window sheers glow a sherberty purple. It's a truly gorgeous early spring morning. The house is ours again, the morning chaos trampled out the door a few moments ago. I'm enthusiastically plying Meg with various activities: painting, play-doh, coloring, clay, games, babies, a walk. Meg is tired, too tired.

Yet, "Mom, what can I do?" is the endless refrain from a five year old, too fatigued to actually play, but too awake to idly lay around. Through gritted teeth and forced fake smile, I repeat our options. No, she wants someone to come and play - anyone. Everyone is at school, I gently remind her. She's lonely for her peers, as am I. She wants to go to the store. We can't, I remind. We have to wait until after you've pooped, then we can go to the store. Her diarrhea is unpredictable and much too difficult to manage in public.

Slowly, slowly I administer the meds into her G-tube. Twenty, thirty minutes pass. I see it in her face. Sure enough, minutes later, I'm holding the bucket and stroking her back. She collapses back onto her pillows after vomiting. She's so tired. But we're home...

Homebound. Different than "homeward bound." Different than "home." To have a 41 lb child declared homebound by an insurance company means it requires extreme effort to leave the home. Understatement. In the eyes of an insurance company few children are homebound, well, because you can just pick them up and move them. "Homebound" assumes a different nuance. It ceases to be a place of being and becomes a state of being. Caregivers wear this mantle as well. It's a shared identity. The constant endeavor to stay upbeat grinds you down.

We go for walks as the weather allows. The fresh air exhausts her faster than a therapy session. It's good, though. She's quiet when we walk. Taking it all in. Content for a short time. Outings to stores are more difficult, but they are a welcome diversion. This past Sunday we ventured out to Toys R Us. We suited up: wheelchair, mask, feeds, travel pump, back pack filled with pull-ups, wipes, extra clothes - just in case, and the ever-trusty puke pitcher.

It's a typical pre-Easter Sunday at the R Us. A little nutty, plenty of families out and about with their children. What surprised me, however, was the prevalent ignorance. Meg and I left feeling disgusted and dirty. Mothers (more than one) actually pulled their kids away by their shoulders as we wheeled down an aisle. Parents shushed their curious children. It's not the children's curiosity that is inappropriate, it's the adults' fears and lack of social etiquette. Hell, we just wanted to go to a toy store and feel normal! I realize people feel unsure how to handle these situations. A simple smile is all it takes folks! Last Sunday was the end to a really rotten week. Too rotten to itemize. The long and short of it is Meg and I are really struggling.

I'm angry. Crazy, 5 O'Clock News angry! The world has moved on without Meg. I knew this would be the natural course of events, but now she realizes it. And she's hurting. And I'm angry that she's hurting. I'm angry that I'm alone every morning holding the bucket while Meg pukes. I'm angry that I'm alone wiping her sore bottom.

Meg is angry that she cannot walk or toilet or color or write or use scissors or ride her bike like before. Meg is angry that she vomits nearly daily. "How many times am I going to do this, Mom?" She knows normalcy is on the other end of finishing chemo and using the potty. Both of which she has no control.

Gratitude requires an awareness of something lost. We are so grateful to have Meg with us, to have her home. But we are grieving, too. We hear people chatter with excitement about Spring. It's hard for Meg and our family to get excited about Spring. This is our first spring, our first Easter since the diagnosis. Our family is so different. Meg is so different. And watching her grieve her own losses is agonizing.

Meaghan's sixth birthday is fast approaching. Her wishes are simple. Mine are not. I am praying that the Lord will snuff my anger. I look forward to returning to rejoicing in the simple joys of family. In the midst of my anger I am grateful for my husband and my mother, who listen with patience and love as I rage against this most unfair world.