It seems that the chemo has caught up to Lillian. She is enjoying her toys and continues to grow stronger. But there are dark circles forming under her beautiful brown eyes. Her clothes continue to hang more loosely about her frame. And the periods of happy play are more frequently interrupted by whining and crying. If there was any doubt that the chemo was working, they have been erased.
The challenge we face as a 24-hour caregivers is patience. Watching my child battle a life threatening illness has given me a new perspective on the value of each moment we have together. However, it does not make me a saint. Fortunately when I run out of the precious commodity known as patience, Jeff seems to have a positive balance and vice versa. God truly does provide in times of need.
One such moment occurred during a car ride a few days ago. Lillian was particularly whiny so we volunteered one of her favorite activities, a car ride. We had just driven a few blocks after we had located the requested buddies (aka stuffed animals), zipped on her sweater, strapped on her shoes and snuggled her into her car seat with a blanket when we heard something that sounded like "de-u-ri-i-b." This utterance of five distinct syllables was unrecognizable. As she desperately repeated it over and over, Jeff and I tried sounding it out. (This is one of our oft used techniques for deciphering toddler-ease.) I had about reached my boiling point as her pitch became more shrill with each passing moment. Finally I turned around and said a bit more sharply than intended "what Lillian???". She repeated "de-u-ri-i-b" but this time added a sign. The sign for car. I silently praised God for sign language as I said with relief "drive, you want to drive?" "Yes, Mommy." How I ask you does a one syllable word, drive, morph into five syllables? Is it any wonder we can't understand these little people? Don't they know what a syllable is? Crisis averted. Often she doesn't really want what she's whining for as much as she wants to be understood.
Today it was something that sounded like "pea pets". Finally I guessed that she wanted to watch the show Wonder Pets. Don't ask me how I guessed that "pea" was actually "wonder", it must have been a God thing. Jeff spent the next few minutes helping her practice saying "wonder pets" until it was understandable. We're not going through that again, that's for sure.
I'm sure you've all been through similar frustrating circumstances. Particularly now that her fuse is shorter, ours needs to be longer. It's a piercing kind of guilt to snap at a child who very likely is in pain. Please pray that God would grant us divine patience. And pray that God would relieve any side-effects that are causing her discomfort.
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11 comments:
Seeing as I work in the place you call your hotel :) I think of you all VERY often. Because I know how important it is to keep the germs out I am staying away, but I will keep thinking of you all as I walk in the hallway of your hotel. Hopefully you will be able to stay at home for the holidays! We will all be thinking and praying for you. Joshua has now started saying grace before meals, so I will try and have him lengthen his grace from "Thank you God for food, AMEN, Let's eat" to including you all :)
Beth & Family
It isn't just toddlers who get hard to understand...when I was sick and dealing with every thing a few years ago I remember (more like my parents do! =)) a few instances where I had to be talked to. Forgive us (the kids) b/c sometimes we're just so sick and tired that making sense isn't easy or top priority. =( I hope you all get to stay home for the holidays. I pray for Lillian (and her parents) every day and hope she fattens up a little bit!
Merry Christmas, Harris Family!
Erin
Hi Lori, I too check your blog daily for updates on you and Jeff, and of course Lily. I haven't left a comment because I'm not really sure what to say and I don't want to waste your time. But here it goes...I have been thinking about you all constantly since Amber filled me in when this all began. I pass your church every morning on my way to work and say a little prayer for you all, including both sets of Grandparents who must also be suffering. I called my folks down in California and they have their prayer group there (as well as one here in P-Town) praying for you guys constantly. Can you feel it? I think it's working! As I sit here at work with tears running down my face I can't help but think about the strenght you have and wonder if I'd be able to be as strong in such a situation. Unfortunately, I don't think I have such a strong faith like you do that I know must be supporting you and that makes me want to strengthen my own relationship with God. Just in case you are all looking out at the sky tonight and you hear 'dars inda guy' I'll translate for you now...it means 'stars in the sky'. I hope you three can take some time to see them. Okay, now my keyboard is all wet and I'm afraid I'll electrocute myself.
PS - Disregard my Santa Barbara invite, we don't expect you to attend but I want to keep you in the loop!
barb
It's hard to imagine how difficult it must be to watch your sweet little girl suffering...I know I can't begin to comprehend, although I feel deeply for you all. It makes me sad to think about the giggly little girl we spent the time at the beach with only a few short months ago...but I know that all of this pain and suffering will be soooo worth it...in a few more, hopefully short months..when she is through all of this yucky chemo - she will be back to her giggly, hopping, sweet little self. Don't beat yourself with the guilt...we all have short fuses some of the time...and that's with a full night sleep. You and Jeff are doing an amazing job of keeping it together and making this little girl's life as comfortable and as fun as possible, despite being sometimes confined to one room, having to watch The Little Einsteins a hundred times and going for the repeated car rides over and over. That would fry any parents patience, let alone 2 parents who are worried, sleep-deprived, anxious, 24-hr caregivers, etc. So, hang in there...you guys are remarkable and are keeping such a positive (and humorous) outlook on everything. We are all thinking about you and celebrate each little victory and milestone in this process. You're half way through...and let's hope that was the long half! :-)
Here's hoping you are all at home for Christmas!
Love you guys,
Traci
I often think of you guys when my fuse runs short (which I think is does way too often) with Hannah and Madeline. You and Jeff have more patience than the average parent so don't beat herself up.
Just today, I yelled at Madeline when she called me at work not because she called but because she's 7 and I can't understand a word she it saying. It would help if she talked into the phone but it would help if I had more patience to give her too.
I hope you can all have a Merry Christmas!
Melissa
Just a note to say we're thinking of you with prayers and tears...what a lucky girl Lillian is to have two wonderful, caring parents. I hope the Christmas twinkling lights can add to the joy of "drives"...and I pray that the true meaning of Christmas can be a comfort to you. Love, Claudia
Thanks Lori for keeping us up dated on Lillian's progress!!
No one said, "parenting won't be hard."And yours will be at the extreme these next four months.
Lillian is so luck to have you two as her parents.
I hope you get that Christmas wish of home for 2 1/2 weeks and the extra pounds.
Merry Christmas and the very best for 2007. Barbara Stinger
We've always believed in the power of prayer, karma, and positive thinking. We also believe that it takes a community to raise a child for the mere fact that where one's patience runs out, there be another one to step in. (Oh the stories we can tell you about our boys.) We pray that every day is better than the last, and that you see lots of smiles in the future on that little face.
Barb and Jeff
I expecte that Jeff would be able to help her pronounce words correctly. He's the one who helped Billy with his "s" words. Remember psider?
Once again your blog amazes me. You write so well giving us information and somehow maintaining your sense of humor! We all could use more patience, but both of you seem to have an abundance of it. Your ability to continue to come up with new things to entertain Lillian is awesome! Our Christmas wish for you is for you to be able to be home with your precious daughter. We hope you watch her eat Christmas cookies, fudge, chips, anything that will help her put on a few pounds. All of you are in our thoughts and prayers!
Love, Paula
Hi Lori and Jeff
Just wanted to let you now that Angela and I are following your blog very closely and that we are always excited to hear good news about Lillian. Give your little one a big hug from Nini (she's sitting on my lap at the moment and tries to type some sentences, too...)
Merry Christmas!
Angela, Nini and Uwe
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