With Us in Spirit

Shayne and I continue to survive by feeling numb, being busy and actually still feeling exhausted from the hell endured over the past three weeks. Perhaps that’s no different than the way we lived our lives over the past for years. While I truly soaked in every moment and have memories of this sweet little child to treasure forever, I thought if I lived in denial and kept busy enough, it’d never really hit me that my baby had a cancer for which there was no cure. It truly hasn’t yet hit us that she’s gone. I guess she’ll always be “with us” in spirit. (And I just keep thinking she’s up in her bedroom working on a craft project and reading or something.) Yesterday, at the funeral home I kept glancing over at her little casket expecting the funny little jokester to pop out and say, “How did I do, mom? Did I fake you out?! Can you believe people said I looked beautiful? My best feature is my blue eyes and they closed them! How about Shayla patting my head so much that she left a bald spot?!” Oh how she would have loved to run around the funeral home playing with the many friends who came to tell her goodbye.

Over and over Shayne and I have said that was the most difficult thing- watching Christi’s little friends come up in tears and not knowing what to say to them regarding the senselessness of this tragedy. It was absolutely heartbreaking. Christi had many, many friends and they brought her incredibly joy. I only hope that they realize she’s always with them in heart and spirit and that they gave her so much by not knowing how terribly sick she really was and by treating her as a “normal” kid – exactly the kid Shayne and I wanted her to be! Shayne and I feel horrible that we’ve done this to her friends’ parents. We know some of these kids are just devastated and it is so very painful.

Also, challenging for me was trying to talk with many of my sweet students and former students who came last night. They shouldn't see their teacher crying and lacking composure. As one not often without a loss for words, they just weren't coming to me as I could see their pain to and thought that this is probably one of the first times they're experiencing death - and the death of a child. I didn't know what to say and my heart hurt for them.

It was a week ago today that Christi had her last “good day” (if you can call what she went through at the end a good day). She spent some time on the computer and pretended to be daddy lifting weights with two bread sticks making us crack up. She always loved those American Girl quiz books and a sweet “Christi Crew” member from afar sent her a family one which we did together until she drifted off to sleep.

It was at that point when I realized I’d better leave denial mode and switch into serious funeral planning mode so that I could continue to live my life with “no regrets”. Over a year ago, Shayne and I had selected the Trauneros to take care of Christi’s arrangements and we really appreciate their total confidentiality in the matter. I knew times would be cruel and it’d be easier to do much ahead of time if possible. From the computer Shayne rigged up at the hospital which allowed me to type right from Christi’s bed, I had countless emails with Andrea and with MLAD. Shayne said many times, “Having the Trauneros just makes sense doesn’t it?!”

Although at different schools, Traunero’s daughter and Christi are in the same grade and share common interests. Although Christi hated flying in small planes because they always made her carsick, on two occasions Rich flew us back home from Philadelphia through his incredibly kind services as an Angel Flight pilot which Christi was most grateful about. Many Angel parents told me that one of the hardest things is after telling your kids never to go with a stranger, turning your kid over to a complete stranger so I knew that I wouldn’t do that, instead I’d turn her over to another mother knowing Andrea would fuss over her when I couldn’t anymore. (Well, that didn’t exactly happen as I never ever expected her body to sit in an inner city Philadelphia funeral home for over 24 hours until they allowed Rich to fly out and bring her back, but I was moved to tears by the compassion I learned of when the social worker called and told me that Christi was with her (or her nurse Amy) until they came to remove her from the hospital.) The Trauneros have worked tirelessly and I can’t possibly say enough about this wonderful couple and what they do at their funeral home.

Also working tirelessly has been Deirdre and Mark. Knowing I wanted everyone to have a little memory / keepsake book of Christi’s amazing little life here on earth, I only wanted THE BEST! Therefore, over a year ago I asked Andrea Traunero if I could have Mark Levens at his advertising / design business- MLAD, create booklets with pictures and noteworthy events in her young life. I’ve always been overly impressed with Mark’s quality of work and I can’t even express how nice these keepsakes are! Days ago I emailed roughly 90 photos to MLAD fully expecting to receive an email back saying, “Nice pics, mom, but now cut it down to 10 for the books,” but they didn’t! They used every one I sent!

Additionally, I felt that handing out bookmarks would be symbolic of Christi’s life and love of reading so MLAD also put a poem I gave them along with her picture on these lovely bookmarks and printed those too. I hope they help her memory to live on and to continue to inspire others to put their problems into perspective and, if I may borrow a quote from Christi- to “enjoy what you have while you have it,” (age 5).

Yesterday’s calling hours were very, very sad – especially initially. Shayne and I asked to have some private time with Christi as we’re just feeling like we can’t get enough of her; therefore, we arrived before noon and we had an hour alone with CT. Saying it was “difficult” to see her in that little white coffin would be an understatement, but we did both think she looked just like a princess. Friends and family were so sweet in coming to pay their respects and by telling us how she’s given them a new perspective on their own lives and that they’ll never forget her. Many told me that they’ve read every journal and blog entry I posted over the past four years and that I should write a book. Well, I have killer candidacy exams to pass and a lengthy dissertation to write first…..maybe someday when the pain isn’t so raw and fresh. (I was incredibly touched to see a beautiful peace lily wrapped in scarlet and gray from my OSU friends.) Christi taught me how to live, so I guess I’ll put “Capture Christi’s Story” on my “to do list” just like Christi always had a list of things going that she wanted to do. She taught me well!

I would like to somehow get all of my journal and blog entries printed out. If you have any ideas about a good way to do this, please let me know. Some, but not all entries are saved, yet they're in a variety of places as we've had computers and disks come and go over the years. I don't know if they can just disappear from the Internet or not, but I would think that is a possibility and it frightens me. So many times I thought we'd sit on the front porch and read them as Christi neared her graduation. Now I only hope that they'll help Shayla heal and grow when she's older. She was only three when Christi was diagnosed. From the time she could remember, her sister had cancer and she'd been put on the backburner. I think reading all we endured over the years will allow her to understand that it wasn't that we didn't love her equally, but that we were trying with all our might to save her best friend's life when the odds were totally stacked against us. We weren't successful and our heart breaks for Shayla. No one should grow up without a brother or a sister available to them in life.

Buttercup, the cat typically found lounging in Christi’s bedroom hasn’t left the foot of our bed instead. It’s almost like “she knows”. Shayla is being very loving to Christi’s cats, now calling them her own. (Something Christi wrote in a diary that she doesn’t like.) Shayla has sobbed many, many times since we broke the news to her Tuesday night. At the funeral home she cried a river of tears which left huge tear drops all over the top of her black velvet dress. Later when her cousins arrived and when her friends came to pay their respects, she was back to her old self running around, talking and playing. I believe this has been and will continue to be devastating to her. We are very worried about Shayla as she lost her best playmate. The girls were so in sync with each other; they shared more than we’ll ever know. (In selecting Christi’s jewelry I picked out a flip flop ring in her birthstone color to symbolize Christi’s love of flip flops. Shayla said, “Josh gave her that and it’s really a toe ring, mom.” Two things I had forgotten or I never knew.) Shayla did manage to leave Christi with a small bald spot, but I hated to hurt her even more by removing her hand off of Christi’s head. (The radiation would have caused baldness which started happening about a day before she died. Shayla always loved touching Christi’s very soft hair and I let it go on a bit before I apologized for having to remove her hand from sissy’s head. The look on Shayla’s face after she saw that wisps of hair were flying all over the casket as a result of touching her hair, will not be forgotten. (And I could just hear Christi bending down from Heaven shouting, “SHAYLA!!”)

Having lost 17 pounds in about 9 weeks, I’ve been eating the food that has been so kindly shared with our family – thank you! Additionally, I’d like to say thank you to my great friends Shari & Anne for putting together a picture / keepsakes display! I know they were at the funeral home working hard for hours and I’m very grateful. It’s nice to share happy memories of Christi with others and Andrea had done so much I just couldn’t dump all of that on her “to do list” also.

If you’d like to scroll down, pictures were added last night – thanks to Eric, in Wednesday’s blog entry so it now includes the dress she will be buried in. (How about my $39.99 Ebay bargain for a new dress with tags from Los Angeles?!) The big relief was when Andrea let me know it actually arrived and was gorgeous. Also, you’ll find a picture I snapped of the gorgeous Tuesday night sky, even though my picture doesn’t do it justice.

WARNING: Yesterday, Shayne and I snapped pictures of Christi’s body in her coffin. Before Christi died I would have thought that was terribly morbid, but you see I’d never lived in these new shoes before and we found looking at her yesterday that it was still our daughter and that we thought she was just perfect. Additionally, other Angel mothers have told me to take pictures as they wish they had final pictures of their child, finally resting and looking so peaceful. We did and I will post them soon. Please do not check the blog if that will offend you. That’s truly not my desire, but to share our story in hopes of helping others and allowing us to put closure on this chapter of our lives. Many have followed Christi’s journey from afar and will not be able to travel to Tiffin, Ohio. I hope the pictures help bring them healing, comfort and closure too.

Still……I just can’t believe after being what seemed “down and out” so many times and somehow always bouncing back that she just didn’t have just one more little comeback in her.

Missing my sweet pea,
Angela