Longing for Home

As we go through Childhood Cancer Awareness Month, I am continuing to feature posts written (and posted) back in Sarah’s cancer days.

(I first posted this is early 2003; it’s a sort of running diary covering several days.)

I’ve just been through one of the hardest nights of my life. Sarah has been spiking a fever of 106 degrees and has been on several additional medications. A couple of them started building up in her system and have affected her in strong ways.

Last night, she hallucinated, had nightmares, cried in her sleep, talked to me about things in her hands that weren’t there, and told me that her toes were going to fall off,. A few times when she tried to reach across the bed to pick up some (imaginary) thing, her little hands would shake uncontrollably. She’d get halfway to where she was reaching and then forget what it was she was trying to do; then she’d settle her trembling fingers back in her lap and pick nervously at the sheet. She was up at least a dozen times and was hostile, confused, and talking utter nonsense most of the night.

During one memorable getting up time, I groggily staggered over to her bed and regarded the situation for a minute, noting that her cords, wires, and monitors seemed to have multiplied since the last time I looked.

I started thinking: Okay. Take the blood pressure cuff off her arm. Unplug the oxygen monitor cord but leave the little monitor on her finger. Hit the button on the machine that keeps the alarm from sounding for two minutes. Unplug the three wires that go into the heart monitor plug. Go on the other side of the bed, hit the morphine pump button once to get her enough pain relief to walk across the room, unpin the button from the bed and drape it on the pole, reach behind the pole and pull the two electric cords. 

With all that accomplished,  I then had to try to get Sarah out of bed while she trembled and cried and talked in circles. I propped her up with one hand and with the other hand, I pulled along the mammoth, machine-laden pole. The bathroom is quite small but I can fit in there with her if I leave the pole in the doorway.

I had just succeeded in getting her settled on the toilet when am alarm screamed, telling us the two minutes were up on the monitor. I would have let it go but it was upsetting Sarah so after making sure she was straight and steady on the toilet, I moved the pole, squeezed by it, and ran to the monitor. I pushed the mute button and then squeezed back past the pole to Sarah who was sitting there rambling about signing papers from people in the hall.

She said very seriously to me, “People will just come to the door and give me the papers and I’ll sign them–and so on and so forth.”

I fought the urge to laugh hysterically over the ludicrousness of it all as I got her out of the bathroom and back into her bed, plugging in all the aforementioned things in reverse order and getting her settled back in until she had to get up again.

Since those kinds of nights (and the days that follow) are so long and difficult, Sarah especially enjoys it when Steve and Nathan come to visit. In fact, when Nathan walked into the room last weekend, a light came to her tired eyes that I haven’t seen in a while. They have spent so many hours together, living full-time in the “cozy” 475- square feet of space our R.V provides. They’ve traveled thousands of miles across the country in the back of a Kenworth truck, doing home school, watching videos, squabbling, talking, and laughing.

In fact, for their whole lives, they have spent twenty-four hours a day together so this separation has been especially difficult to deal with. Sarah adores Nathan and he takes the best care of her.

Anyway, I was glad that he got to come and be with her. She felt terrible the night he came and he was able to witness firsthand her tears, her pain, and her isolation and got a better understanding of what a difficult journey his courageous kid sister has been on. He got her some water, showed her how to run the DVD player, hovered over her bed to chat, and did his best, in his dear, awkward teenage way, to lift her burden. They are some great kids and I desperately miss being home with them both, being a mother to them both.

Well, this is now twenty-four hours later and we’re still hanging in there! Talking is difficult for Sarah right now because her mouth and face are swollen from being filled with sores. The nurses have been trying to convince her to gargle with morphine because the other kids have gotten some relief from doing that. Sarah had declined vehemently until today when the pain got so bad that she became desperate enough to try it.

The nurse brought the liquid to her in a medicine syringe and Sarah squirted the whole thing in through her swollen lips and swished briefly. I could tell by her highly expressive face that she was completely unimpressed with the experience. She spit it out rather forcefully, took a big swig of water, and then gave the morphine the lowest insult she could possibly think of which was, “I’d much rather eat GREEN BEANS!”

For the past ten days (with very few exceptions,), every time I’ve looked into her eyes I’ve seen only sorrow and suffering. This morning she was obviously depressed, tired of fighting, tired of pain, and tired of being in a hospital bed knowing that all her friends were having a wonderful time out there in the real world.  Since being on the transplant unit she’s shed a few tears here and there, but not a lot. This morning though, as I sat beside her on the bed, she began to wail with loud, wrenching sobs saying, “I miss my HOME! I miss SWIMMING! I miss SNOWY! I miss MILK!”

In her own 7-year old way, she was grieving the things she’s lost, grieving things no child should have to grieve. I put the Kleenex box beside her and she grabbed tissues with both hands, wadding them up and swiping her face, nose, and eyes while she bawled. It’s been a long time since I’ve seen her cry that hard. I lay down beside her, settled her soggy head on my shoulder, and began to pray aloud for her that she would have peace in the middle of this horrible time. Her sobs continued but they started to get softer as I stroked her cheek and sang the chorus of my song, “Like a Blanket.”

She took her little worn blankey in her fists and bunched it up under her chin, and snuggled into my chest while I sang. As I’ve mentioned in past entries, I’ve sung that song in hundreds of churches but there’s no audience more special than my war-weary child. She finally drifted off to sleep, snuggled under her blankey, surrounded by a pile of Kleenex, and enfolded in her mother’s love.

At other times, though, a mother’s love doesn’t seem like enough to offset the suffering and trauma she goes through. Last night I heard her crying in her sleep and then a few minutes later, she woke up and started to vomit. Vomiting has changed a lot since being up here. Her mouth hurts so badly and she has nothing in her stomach to throw up since she’s gone 17 days without eating. What she’s left with is thick mucous and phlegm, along with stuff produced in her esophagus where the sores are making the cells slough off.

She almost screams when she vomits, like an animal in pain, trying so hard to get so little to come up. Last night as I rubbed her back and felt the heat of her skin burning through the fabric of her pajamas I thought, “I’m SO sorry, Sarah. I’m so very sorry.”

It is incredibly difficult to be a mother and not be able to do anything to make the pain go away.

She was throwing up yesterday when a commercial came on TV featuring a whole bunch of young children in bright colors, swimming, dancing, running, smiling. Under any other circumstance, it would have been a cute commercial but watching those healthy, energetic children enjoying themselves while my daughter was in so much such pain was upsetting. I held Sarah’s basin and looked up at the screen thinking, “Why? Why are they out there having fun and Sarah is in such trauma? Why was she chosen?” Of course, there was no answer but the questions remain.

In a few minutes, after making sure Sarah is settled in with a nurse keeping an eye on her, I’m going to venture down to the cafeteria to get some lunch.  I miss cooking so much and I also miss sitting down to supper at home with my three favorite people. A lot of times when we’re at home together we sing our prayer and at the end we all get very dramatic, going up to high, loud notes and flinging our hands out like one of the Three Tenors. (Snowy musters up all of his doggie courage and stands his ground despite the horrid din.)

I miss the noise of the kids, I miss Snowy always sitting under Sarah’s chair (he knows from whom his blessings flow) and I miss the simple joy of eating simple food with laughter in the air.  Suppertime with my family is one of the first things I stopped taking for granted when Sarah and I began our 110-day (total count) stint in the hospital.

So the next time you and your family have a meal together, do all of us up here on the transplant unit a favor. Turn the TV off and sit down at the table together. Look around and really notice the people you’re with. Linger a little longer, laugh a little louder, and love the ones God has blessed you with. Every one of the bereaved parents who have passed through the doors of this unit would give anything to sit at a dinner table and hear their child’s laughter again.

Hold tight to each moment, enjoy your children, and pray for all of us up here whose hearts are longing for home.

A picture of thanksgiving that needs no words.