Tuesday, December 16, 2008

Christmas is Here!!

Well, almost. But judging from the toy aisle at Target, you would think it is tomorrow. I went in hopes of finding (another) princess phone for Holly for Christmas and do you believe I got the LAST one, at least at this Target. It was such a fun trip b/c I could feel the Christmas shopping fever but I wasn't stressed at all b/c I am pretty much finished shopping and was basically just browsing and hanging out in my favorite place. I do have to go by the "Cars" aisle every time to check if they new cars, which always brings a tear to my eye but also brings back some very happy Joseph memories.

The last couple of weeks have been really tough for me. I seem to go through phases where I feel like I'm fine followed by a period of intense sadness and missing him so much. I miss his energy and cheerfulness and passion for life, but I also just miss parenting him and taking care of him and watching him interact with Holly, taking on the role of older brother. And I'm sad for Holly that she won't have him looking out for her as she grows up.

We went to Atlanta this past weekend for my friend Beth's baby shower. We are so excited for them as they anticipate the arrival of their 3rd son in just a few weeks. Holly and Logan had so much fun playing together and it warmed my heart to see her racing around the house with cars and trucks again. It was my first time being back in Atlanta since last April and it was every bit as hard as I thought it would be. I was so nervous about going back that I thought, "It has to be easier than I'm imagining," but really it wasn't. Every part of that place holds so many memories for me and makes me miss Joseph all the more. We did really enjoy seeing old friends, though, and I was glad to get some good quality time with the people we love. Holly and I popped over to see some friends on Sunday and below is the picture we were able to catch:

This is what I love about toddlers (which used to drive me more crazy than anything). You just have to grab conversation when you can--in between breaking up toy wars, bringing kids potty, answering questions, etc. It makes quiet conversations at a coffee shop that much more precious and memorable (and rare). I am so grateful that God has blessed me with wonderful friends to go through motherhood with.

This weekend we leave for a cruise with Allen's family. It is our Christmas present from Mimi and Big Daddy. We are really looking forward to it, and Holly is excited about going on a "big boat." So, I think it will be a nice diversion for all of us and we will enjoy not cooking and just relaxing and spending some time together.

Wishing all of you a Merry Christmas and lots of fun family memories. And you better get to Target NOW if you want a princess phone. :)

Friday, December 12, 2008

Praying for Jackson today

My friend Vivi in Atlanta recently told me her friend found out her little boy (18 months old) may have a brain tumor. They are not exactly sure what the mass is, but it was causing Jackson to have seizures. This morning he is in brain surgery to remove the mass. I am praying that they would be able to remove the mass safely, that it would be something low-grade/non life-threatening, and that Jackson would recover amazingly well with no damage to his brain or other bodily functions. Of course I'm also praying for his parents, that God would surround them with his peace. Please join me in praying for this family. Their website is: http://www.caringbridge.org/visit/jacksonwilliams
Thank you!!

Monday, December 1, 2008

Christmas is Coming!

Now that it is officially December Christmas seems so close!! We put up our Christmas tree and lights, manger scene and light-up Santa. We don't usually go all-out for Christmas, but this year we have more lights and decorations than we ever have, and I have to say I love it. Holly also loves it, and every time she passes any kind of Christmas light or decoration she pauses and says, "It is sooo beauty-ful." We really don't have many Christmas traditions yet, but one that we started a few years ago was to decorate the tree listening to Bing Croby's Christmas Album, and then have Taco Soup and Egg Nog for dinner. This year it was even cold enough to feel like Christmas, and then as a bonus we got snow today!! (After I mocked Target for replacing the rake aisle with snow shovels, saying, "How much snow do we really get?")

Holly is still trying to figure out how Jesus, Santa, and Christmas all tie together. Today she was telling me she wanted a purple and green vacuum. Then she thought about it and said, "Maybe Christmas will get one for me?"

We had a really nice Thanksgiving, aside from the fact that I was sick most of the week. The only good thing about it was that it took my mind off missing Joseph. The really hard part for me was opening up our box of ornaments when we started decorating the tree. I hadn't realized how many ornaments we had for him. There were a couple I had made for him, then a couple with his picture inside, then a few that had all of our names on them. The one that really got me was one with a picture of when he was five months old and Mimi and I thought it would be so cute to put him inside a stocking. It really is a cute picture, but it just made me sad that we won't get to do silly things like that anymore.
I loved getting to spend time with my parents and siblings and their children. One night all my sisters and brothers and I went out to dinner without spouses, something I don't think we have ever done. We had a lot of fun, and I laughed more than I have in a long time. We talked about "Love Languages," of all things, which just made us all really bellyache as we tried to figure out Sam and David's.

Cousin Bella is staying in Nashville for a few days, and Holly loves having a little playmate around. Bella took a nap over here today and she and Holly slept in the same bed for 2 hours. I couldn't believe they did it. After nap I got them a snack, then Holly got them both a box of raisins (one of her and Joseph's favorite snacks). Bella told her that she didn't like raisins and Holly just couldn't believe it. "Just try them! You DO like them." She was practically force-feeding her before I told her that there are people in the world who don't like raisins, and Bella didn't have to eat them. I just thought it was hilarious that Holly was trying to convince her that she really did like them. "They're juicy and sweet!" she said. I can't bear to tell her that they aren't my favorite snack either.

I hope all of you are having fun decorating for Christmas and shopping for or making gifts. A friend of mine dropped over an Advent Calendar today, the kind with the chocolate behind each day (Thanks, Katie!!). That was one of my favorite things to do as a child, so I'm excited to start doing it with Holly. The girl has a serious sweet tooth like her mommy, so I'm sure she will love it. Hope you all are enjoying some fun traditions, too. Stay warm and enjoy those Christmas lights!

Monday, November 24, 2008

This week last year

Well, it has been a year now since we found out Joseph had a brain tumor. It was this week last year, Thanksgiving was over and we had come home to Atlanta. All week Joseph had this strange head tilt that kind of came and went. He was always so quirky that I just attributed it to him being silly or something. I honestly was not worried one bit about it. He also had been a bit off balance, but that also didn't worry me since he was always a little clumsy. I could tell Allen was worried but was trying not to show it. He had checked his eyes to see if he had a reflex and his left eye did not blink at all when he flicked his finger in front of it. When he showed me that I became extremely worried. We took him to the pediatrician who was not sure what was going on, but referred me to an opthamologist. I was planning to bring him there on Thursday. But on Tuesday night Allen came home from work early (he was supposed to work all night at the hospital) and said his attending doctor recommended we bring Joseph in first thing the next morning for an MRI. I was pretty worried at this point, but Joseph was so happy and normal in so many other ways that I just couldn't comprehend that anything serious could be wrong.

That afternoon, before Allen went in to work, I had gone to Starbucks (something I did regularly whenever Allen was home and I needed a breather) and called my sister while I had some coffee. I was relaying to her what was going on and that we were going to take Joseph to the opthamologist. At this point I don't think we had decided to take him for an MRI. Anyway, about halfway through my conversation, a sweet lady who had been sitting beside me got up to leave. As she walked by, she dropped a little note onto the table and smiled at me. It read "I will be praying for your son." I couldn't believe it. It stunned me that I had been speaking that loudly (oops) for her to hear everything, and that what I had said prompted her to pray. This was my first inkling that something was wrong. I just felt it.

The next morning, we woke up the kids at 6:00 and headed to the E.R. While Joseph was in getting his MRI, I received a phone call from our dear friend B.J., who was calling to see if I would check in on his wife, who had recently lost her baby. I wasn't going to tell anyone we were in the hospital until we knew what was going on, but I felt like I needed to explain why I couldn't call to check on my dear friend who needed me. I think he was on his way to work, but he said, "I'm coming right over there. I know Allen is going to tell me not to, but tell him I'm coming." I realized at that point how scared I was, because I really was grateful he was coming to offer us some moral support. I had a feeling our world was about to come crumbling down and neither of us were prepared for it. I remember both Allen and I saying, "But it could be nothing; We'd hate for you to come all the way over here for no reason." But, God must have given him insight as well, because he came right over and waited with us.

When they wheeled Joseph back into our little waiting room, he was still asleep. I remember feeling like I might be sick. Then the doctor came in, who happened to be a man whose child Allen had taught when he taught 5th grade. We had house/babysat for their family when they were out of town and they had gone to our church for a while. We were so thankful to have someone we knew and trusted to give us this news. I still remember it as though I was watching someone else. The words were registering in my head; I could comprehend what he was saying--it just didn't seem real. How could there be a large mass in Joseph's head? How could it "probably be cancer"? How did they know that? I remember saying, "But, he's so little." Cancer happened to older people, not to children, not to my child. Then a few moments later I went outside to get some fresh air and cry.

Those few days, while horrific, were also such encouraging and sweet days. We could never have expected this news, but we also could never have expected the outpouring of love we received from friends and family and the community at Emory. Joseph got balloons and stickers, toys, treats, McDonald's, Moe's, cars, trains, all his favorite things. I still remember when all the aunts and uncles and grandparents showed up at his hospital room that he probably felt like he was the most special child in the world. Everyone was there to see him and love him and make sure he had everything he needed. We are so thankful for all the many, many people who served us and loved us and supported us during that critical week (and the ensuing months).

I recently read an article about a family in Ireland who lost their son to a brain tumor. They had no indication that he was seriously ill. They thought he had gotten a stomach bug, and after a few days of him not getting better they took him into the hospital. He went into a coma that day and died from the tumor that had grown so big without their knowledge. After reading that article, I realized how that could have been our story. If Allen had not noticed the serious issues with Joseph and if the doctors at Emory had not taken him seriously and gotten us in there quickly, we could have bounced around from opthamologist to neurologist before anyone thought it might be a brain tumor. There are so many people I have met at St. Jude's who said it took them months to figure out their child had cancer. I think in our case we wouldn't have had months and it would have been too late. So, I'm so thankful the Lord gave us 9 more months with him and that we got to see him grow up some more, really enjoy life and really enjoy spending time with grandparents and cousins and our family that loved him so much.

So, this Thanksgiving I'm thankful for my family I have here with me. I'm thankful for the four wonderful years of life I got to spend with Joseph and all the wonderful and special memories we have with him. I'm also thankful for the many ways God supported us and provided for us throughout this journey. I can honestly say I'm not scared of much anymore. Well, I guess I don't fear things as much because I feel like if we can get through this, then we can probably get through other things. To say I miss him just doesn't cover it. But his life has influenced me and Allen and Holly, and our family will always include Joseph. He is always on our minds and in our conversation and we regularly quote "Josephisms." Holly still imitates him and wants to be like him. I hope that never changes.

I'm still processing everything that has happened. One thing I'm learning, though, is that it really is best to be thankful for what you have. It can always go away. I could be bitter and angry that I don't have Joseph anymore, but what would that do for anyone? I have Holly, a wonderful husband, a sweet new doggy, an absolutely amazing family, and the sweetest friends in the world. I really am blessed. I think we all are in different ways. We just don't always recognize it.

Sunday, November 9, 2008

What We've Been Up To

We have a new member of our family, a cute little beagle we have named Kellogg. My mom found her on the side of the road on the way to dropping David to school. It looked like she hadn't eaten in weeks and had no collar or tag, so my mom had pity on her and took her home. She then called me to tell me she had found Holly's dog. A flea-ridden half-starved dog. Just what we always dreamed of. :) But then I met her and she was the sweetest little dog, very scared but really sweet and loving. When I looked at her, I thought, "This is our dog, and her name is Kellogg." Don't ask me why.

We have been contemplating getting a dog for the last few months, so this seemed like the perfect opportunity. We took her to the vet and got her fleas and worms (uggh) taken care of, so now she is fattening up and looking healthier every day. If only we could get her to pee outside, she would be the perfect dog. She is really patient with Holly treating her like a baby doll and so far has been extremely gentle. And I think Holly gets competitive with her and gets jealous if I'm giving her too much attention. It is really funny. They have even started to fight over toys. Holly has a care bear that talks, and Kellogg is either scared or very excited by it, but still loves it. Well, we had a big fuss over it tonight and we had to resort to "taking turns" between the dog and Holly. Oh boy. It's good for Holly to have a little playmate, though, and she absolutely adores her little puppy (who is actually 3 yrs. old).

Speaking of potty training (the dog), I have decided to add to the craziness and try to potty train Holly once and for all. This is the week. I am a big wimp and basically put off potty training until they are practically asking to be potty trained. Holly has been asking why she can't wear the underwear that has been sitting in her drawers for months now. She can definitely use the potty and has been for a while, but things have been so crazy, it was just the last thing I wanted to do. But now it's time (I think). She asked again tonight if she could start wearing underwear so we are going to really focus on it this week.

Holly has been taking a little "Mommy and Me" gymnastics class once a week and has just been loving it. Her favorite thing is the trampoline, but this last week she got to swing on the rope and she got really excited about that. She is good at all the activities, but she has exceptional arm strength, so hanging on bars and ropes are her forte. This is her waiting for her turn to swing on the rope. You can see the glee.

This is Halloween. We had a really sweet flower costume for her but all she wanted to wear were Joseph's Thomas pajamas. Last year Joseph was Spiderman (in pajamas) so I think she may have wanted to be like him. She looked adorable either way and people still gave her candy even if they weren't too impressed with the costume. :) Here is a picture from last year's Halloween. You can see the similarities:

How we missed him this Halloween. It just wasn't the same without him there to lead us in running from door to door. My heart still wrestles with believing he is really gone. I know Holly is struggling to grasp it. She is finally telling us that she misses him, and if I say I miss him too, she will quickly say, "Me, too." We are so thankful for Holly. I don't know what I would do if I didn't have her little voice and face to light up my day. She definitely has her "terrible two" moments and days, but I'm even thankful I have her here to drive me crazy. It is a privilege to be able to raise one of God's creations. I just pray constantly that He will give me wisdom and grace to teach her and guide her the way I should.

Tuesday, November 4, 2008

Big Success!

Kate Etue made these delicious, creative pies--for Obama and McCainMerridees donated 15 pies, which got snatched up quickly!
Some friends stopped by for cupcakesThis sweet girl sold her Halloween candy so she could make a donation. Yes, she SOLD her Halloween candy for childhood cancer research.
Just a sampling of the many, many goodies that were lovingly baked for this sale.

This handsome guy stopped by to set up and break down tables and man the table.

Special thanks to Katy, Amanda, and Em'ly, who mailed goodies from afar. Thanks Mom, Kathy, Jennifer, Katie, and Kellie for helping with organizing and finding a location. And special thanks to Ruthie, Penny, Katie, Jennifer, and my hubby for manning the table and providing moral support. We had so many people stop by and were really shocked at how much we were able to raise for childhood cancer research. Thank you to everyone who contributed in any way, whether it was baking or coming by to get some goodies. I really had a lot of fun doing this. The organization, Cookies For Kids Cancer, was hoping to have 50 bake sales in 50 states on election day, so we were able to provide the Tennessee one. I hope that all of us raised lots of money to help with research for childhood cancer. I think I can request that our funds go directly to brain tumor research, which would be awesome!

It was a really amazing day. God gave us a perfect day, sunny and warm (I even got sunburned in November), and a beautiful location in Westhaven. We got to meet lots of people and be a part of the fun of election day, too.

Monday, October 27, 2008

Bake Sale

We have a location for our bake sale!! It will be in Westhaven neighborhood in Franklin on election day, Tuesday November 4th. We will be there from 10-2 and possibly at 5:00 again if we still have goodies. Holly and I had fun shopping in Michaels for some fun boxes and baggies for goodies (and we might have left with some candy corn and birthday candles that weren't necessarily on the list). Holly has been slightly fixated on her birthday, which is still several months away, and we have daily conversations on what the theme will be and what we will eat, etc. So, the birthday candles were for her birthday cake that I won't be making until, oh, February. And come to think of it, I think we also have princess plates that we bought in August, also for her birthday.

We have been having a nice few weeks with lots of visitors. Our friends Margaret and Matthew and Sarah came in for a visit from Atlanta; cousin Will was here, then Deacon; then this last weekend all my family came in town to celebrate my Dad's sixtieth birthday. As Sam put it, we are all thankful for sixty years of Billy Taaffe. I think Joseph inherited my Dad's passion for life and love of people, two things that made Joseph so special. We love you, Daddo!

We have been doing okay...this month last year is etched in my memory because it was the month before everything starting falling apart. I can still remember taking the kids to a pumpkin farm with the Slotkins, our playgroup Halloween party, the nursing home to trick or treat, and just enjoying the fall weather. We have some great pictures and great memories, but it makes this season bittersweet. I guess this is the first "holiday" we will have without him, the first of several in the next few months.

The first time we took Joseph trick-or-treating (he had just turned 2), we started out walking through a neighborhood in a little parade with lots of other children and parents. When the parade finished he thought that was it. But when we starting going up to doors and getting candy, his face had that blissfully shocked look and he could not believe people were just giving him candy. He started racing from door to door. It is the fastest we had ever seen him move. At first, he thought he had to eat each piece as he received it, but we finally got him to put it in his pumpkin and save it for later. The next day, he woke up and wanted to do it again that night. He didn't understand why we couldn't just do this every day. I had fun imagining all of us dressing up and walking around saying "trick or treat!" on a random night in November. I think people might have had pity on us and given us some leftover candy, right?

So, we are still missing him and thinking about him a lot. Last week I was having a really hard week and I realized how powerless I am to make myself feel better or even do the things that usually make me feel better (spending time with God, reading, etc.). I started thinking about how God wants us to come to Him as we are, with all of our pain and hurts, not as we think we ought to be. That is my biggest struggle. I really want to come to God and say "Look, aren't you proud of me?" But I have been feeling so un-proud of myself and just down in the dumps that I really can't do that anyway. So, I am trying to invite God into my pain and painful thoughts. If I start to go down a road that I know will end in me sobbing, I just ask God to redeem this sobbing. To take my tears and somehow make them beautiful or healing. I know that sorrow is not wrong, but I have a feeling that if God is not redeeming it it can easily become bitterness or resentfulness, which I really don't want. It even helps in thinking about some of the more painful times, like in the hospital after surgeries and thinking about times when Joseph just wasn't feeling well. I have been asking God to travel back with me in those thoughts and not let them become a source of guilt or depression. So, if you think of it, please join me in praying that.

I hope you all are getting to enjoy some of this fall weather. There is something so cheerful about a pumpkin. We have two big pumpkins on our front porch and every time I drive up and see them I just smile (thanks, Nana!). Happy Fall, everyone. Drink lots of cocoa and don't forget to come by our bake sale for some yummy desserts next Tuesday.

Wednesday, October 15, 2008

Normal Life

I have to confess something to you. I'm a little more uncomfortable with this blog now because all we have to write about is how we are doing, not about how Joseph is doing. It was originally set up to update family and friends on Joseph's condition, but it became a place to write to friends and receive encouragement and support. This blog became our best friend, in a very odd way. But now that Joseph is gone I don't have the comfort of writing about how he is doing, what we are doing together, upcoming appointments, etc. Life seems very bland now, like anything that is going on is not worthy of writing on the blog about. Life is back to "normal," but a very strange normal. It became normal to have to administer medicine several times a day, to be constantly on the alert, to have doctors' appointments schedule more often than we enjoyed. And we felt we were living on borrowed time so every day was a great celebration that we had another day with Joe. Now our normal is still not normal, because we now have only one child in our house, we are all of a sudden in a new city (which somehow I didn't process until now), and we had sorta gotten used to the other crazy normal.
Every day I sort of expect things to be different--like maybe today I won't be as sad, maybe this was all a bad dream and he will come back and things can go back to normal, maybe it won't feel so empty and wrong everywhere I go. Joseph was so much a part of me--he formed me as a mother, and he was always a part of my conversation with others, a part of what made our family "our family." Now it just feels like we are waiting. Hoping that something sudden and happy and exciting will happen, something to make this sadness and awful grief go away. I know it will be with me for a long time, but I feel like I should be acting like a normal person and I should be able to go to the grocery store without tearing up when I see his favorite juice boxes or the toy aisle where we desperately searched for "choo choos." I have this crazy urge to tell random people that I have a son and he died and I'm not just a normal person having a normal day.
I've never experienced missing someone this much, either. Allen and I took a week-long vacation right before he started residency and the grandparents graciously watched Holly and Joseph. It seemed like a great idea, but by the end of the week I missed them so much it hurt. It just didn't seem right to be away from them and I couldn't truly enjoy the trip b/c I wished we had brought them or had made the trip a little shorter or something. It was a wonderful time with hubbie but I think that trip made me realize how much a part of me the children were. It wasn't as easy to "check out" and just leave them behind as I had thought. Anyway, this feeling feels like that times a thousand. All of the knowing that he is in heaven and in a better place doesn't make this feeling go away. It's definitely a comfort and I am thankful he is in the best and happiest place he could be, but like I said earlier I just want to be with him and be his mommy again.
I read this verse today and it reminded me that God can do the impossible:
"and provide for those who grieve in Zion—
to bestow on them a crown of beauty
instead of ashes,
the oil of gladness
instead of mourning,
and a garment of praise
instead of a spirit of despair.
They will be called oaks of righteousness,
a planting of the LORD
for the display of his splendor."
I am praying that God would make this a reality in our lives and that we wouldn't let the sadness and grief overwhelm us completely. Thanks so much for your faithfulness in caring for our family and for praying for us throughout this whole journey.
Also, THANK YOU to everyone who has emailed me to offer baked goods for the bake sale. I am totally overwhelmed with all the people who have responded with such enthusiasm. I even have two kind women who are shipping goodies from across the country! And our friends over at Veggie Tales are contributing some DVDs of "The Ballad of Little Joe" (which was made a few years ago and is about facing hardship). Still working on a location but will post that once we have it...

Monday, October 13, 2008

Cookies for Kids with Cancer

I have always loved bake sales. From the time I was a wee one, just the sight of a pretty table filled with all kinds of sweet sugary goodness set my heart a-flutter. In fact, one of the only pictures we have of me as a toddler (I am the third of five children--need I explain?) is one where I am standing in front a table of goodies (at a wedding, maybe?) with my finger reaching for some icing or treat.
So, when I was asked if I'd be interested in hosting a bake sale for "cookies for kids cancer" I was very eager to help out. Not only will we be raising money to support childhood cancer research, but we will all get to enjoy a treat on election day. So, the bake sale will be on November 4, election day, and the location is yet to be determined. Here is the website where you can read some really interesting statistics and learn more about this great organization:
I'm going to need some help filling our table with cakes, pies, cupcakes, cookies, muffins, and Joseph's absolute favorite--brownies!!, so if anyone out there would like to bake something to contribute to the sale, please email me. I'm very excited about this, and I know Joseph would be too. I think he and I were tied on how much we liked sweets.
Once we know where we are going to be able to have the bake sale, I'd like to invite all of you to come by and sample some goodies while we participate in electing our new president.
On a much sadder note, there is another little boy who has been battling a brain tumor for just over two years. He is such a sweet, brave boy named Aidan, and he will likely be going home to meet his Savior and play with Joseph in the next week or so. We are really saddened by this as we have grown to love him as we've kept up with his blog. Please pray for his family or sign their guestbook to let them know you care: http://www.whynotaidan.com/
All of your notes and comments were so encouraging to us in those final days with Joseph and I know they would appreciate an encouraging note. Thank you!

Tuesday, October 7, 2008

A good trip

We had a really nice time at the beach. We are so thankful the Moessners agreed to come with us, as we loved the company and Holly loved having little friends to play with. There were moments of sadness for me, but overall I just enjoyed the beautiful weather, gorgeous sunsets, and having the beach practically all to ourselves. We also played my favorite game "Boggle" almost every night and stayed really late like we were in college again. What a blessing to have good friends!

The unexpected hard part for me has been coming home. It was really emotional for me coming back into the house, because the last time we all returned from a trip was our last trip to Memphis, the day Joseph died. All those emotions just rushed back and in some strange way I feel like I'm experiencing those first days all over again.

I've been reading a couple of books on grief, and both of them talk about not being able to focus on anything and feeling tired all the time from expending so much emotional energy, which I could totally relate to. I feel it takes all my energy when I cry or am just feeling sad, but also to try to take a deep breath and move on with the day. Normal tasks are no longer easy and normal.

One man also talked about a real physical sensation of having cement blocks on your shoulders. I couldn't quite articulate that to myself or anyone else, but that is exactly how I feel. He also said he felt like he was constantly breathing very shallowly, and I also feel that, and find myself taking deep breaths every now and then after I realize I haven't been breathing normally. I never knew grief could affect you so much physically.

Holly is doing well and continues to tell us she is fine and doesn't miss Joe P. We know she does, but this is her typical answer. The one manifestation of her grief I see is that she has become very attached to me, which is fine. She started gymnastics class yesterday and absolutely loved it. I was so proud of her as she jumped on the trampoline and did her "bear walk" along the parallel bars. I think her favorite part was playing with the parachute at the end and getting to run underneath it.

Oh, and I mentioned in the previous post that it would be hard to see all the places at the beach where Joseph used to have fun. One of those places was the little fountain near all the restaurants in the village; Joseph used to jump around in it while we waited for our table to be ready. Well, as we walked past it last week I noticed that it was broken in the three places and there was an orange cone on top, which seemed very appropriate to me. If Joe P. can't play in it, then it should just be broken (so selfless of me, I know :)).

So, overall I think we are doing okay. Allen has been writing lots of beautiful songs out of his grief, which helps ease my sorrow too. I feel like God has been meeting me in nature--through being outdoors and just seeing his creation and beauty. In some situations words just are not enough, but I do feel He speaks very loudly through creation. In the song "Shout to the Lord" there is a verse that says "Mountains bow down and the seas will roar at the sound of Your Name." The Bible also personifies nature a lot, and I have never felt that nature truly does glorify and worship God as much as I do know. It is a very non-intrusive and gentle way that God is reminding me that He is here and that He loves me.

Friday, September 26, 2008

Off to the beach

Well, tomorrow we embark on our first family trip without Joseph. On one hand we are really excited and thankful we are able to go the beautiful beach and relax and have a change of scenery, but I am also fearful that everywhere we go will remind me of him and that it will just be sad being there. We have taken him there since he was 3 months old and we have many happy memories and favorite places we shared with him. I know it won't feel right going to the playground without him, walking past the fountain at the village without him splashing in it, riding in the tram without his indescribable glee. There is just no way around this sadness. I wish we could avoid it, push it away, not let it consume us, but it's just sad. That is all there is to it.

We are bringing some dear friends with us who also have children, so we are really looking forward to that. We told Holly, "Guess who will be at the beach with us??" and her little face lit up with hope and she said, "Joe P.?" Sweet Holly. She talks about Joseph all the time and has been expressing more that she wants Joseph to live back in our house again. I think she is realizing that he really isn't coming back. She is otherwise doing very well, and I am glad she is telling us her feelings and that she feels comfortable talking about him. But some of her sincere and innocent questions just break my heart into pieces.

She recently graduated from her crib to a "big girl bed" which she was beyond excited about. It's hard for me to believe that her next birthday will be number 3. She has always been the baby, but I have to get used to the fact that she is now the oldest and she is getting bigger. In fact, she is so big she has decided to ask God for her own baby to keep in her house (a pink baby--meaning a girl). She is really into playing baby dolls and has been for a long time, so I think she now thinks she's ready for the real thing. She is really nurturing and loves to take care of everyone, so I have no doubt that she will one day be an amazing mommy. But, here are some pictures of her reveling in her big girlness:

"Go CPA!!"

"I am way too cool for my little crib!"

"Ta-Da!! Wild Flowers!"

On the wild animal front, we have not seen any more snakes but we did have a skunk visit our air conditioning duct, so we now have a permanent skunk smell in our house. We haven't been using the air conditioning at all and have candles burning most of the time, so now the smell is tolerable. Always an adventure 'round these parts. We also have a squirrel and a cat that roam around our house, often peering in our windows forlornly. I'll let you know if they do anything exciting.

We are really looking forward to our vacation. Please pray that we would have a safe and fun trip and that God would give us peace and strength and comfort as we miss our little Joe P. God has been so good to us throughout this journey and we are so grateful for all the love and support so many of you have shown us. Thank you for being such great friends to us. We love you!

Saturday, September 20, 2008

Victory in Death

"This website has shown me there is a lot of goodness in this world."

An anonymous person wrote this comment on our blog the other day. Remember, this blog is the story of a child who battled brain cancer for 9 months, only to die the day after his fourth birthday. And this person sees that there is a lot of goodness in this world from reading about this? How can that be?

"Where, O death, is your victory? Where, O death, is your sting?" The sting of death is sin, and the power of sin is the law. But thanks be to God! He gives us the victory through our Lord Jesus Christ." (1 Cor. 15: 55-57)

With God, everything is backwards. The reason is because of Jesus' death and his victory through death. We tend to think of death as the end, the final failure, the ultimate evil especially in a child's life. I know when Jesus died, his faithful followers couldn't believe it. THIS was the Messiah, the man who was supposed to save them and use His power to rescue them. But he died a gruesome death on a cross like any murderer or thief and left us. There was no miraculous rescue. He didn't call down fire from heaven to destroy his persecutors. What kind of victory is that? If that had been the end of the story, it would have been a bit disappointing. But the victory comes in on the third day. He came back. He was alive. He conquered death so that it wouldn't conquer us.

A friend of mine shared this quote with me from a book entitled My God and My All by Elizabeth Gandse:

"It is never the beginning of the story to say a child is born, nor is it the end to say a man has died, for long preparation leads up to every birth, and a death leaves behind it a power for good or evil that works on in the world for longer than the span of life from which it grew."

I think of Jesus' death and the impact it has had on the world the last 2000 years or so. We now have this incredible power for good because of his death and his Holy Spirit that he left in his stead. We would not have his Holy Spirit if he hadn't left us. We wouldn't have power over sin, fellowship with God and intimacy with Him, and the assurance of ultimate pardon. No one can take those privileges away because they are sealed with the blood of Jesus. There is also unbelievable evil, but we now have hope that this is not the end of the story. Jesus can redeem it, and he will redeem it, and he is redeeming it. (And he uses us to redeem it!)

One of the reasons we named Joseph "Joseph" was because of the Old Testament character (see Genesis 37-50). He is an amazing role model (not all O.T. "heroes" are) because of his response to suffering and injustice. His brothers basically kidnapped him and sold him into slavery and lied to their father, saying he was eaten by a wild beast. Years later, after a lot of suffering and more injustice, Joseph is given great power and authority by pharaoh because of his ability to interpret dreams. There is a great famine in the land and his brothers come to him (not knowing it is Joseph) to get some food. After some more lies from his brothers and the death of his father, his brothers are worried that they have finally put Joseph's patience to the limit. His response to them is just amazing:

But Joseph said to them, "Don't be afraid. Am I in the place of God? You intended to harm me, but God intended it for good to accomplish what is now being done, the saving of many lives."
He could see through his own pain and suffering and separation from loved ones to the truth that it was God who put him where he was to work a greater good than his own happiness. Such amazing humility and trust in God!

I remember thinking what a gift it would be to have a child who grew to be a man of this kind of character. It turns out our Joseph didn't live to be a man. But in his short life I believe he showed many people the goodness of God and the goodness we are all capable of because of Jesus. The name Joseph means "the Lord will increase," and I just pray and hope that our Joseph's death will leave behind him an incredible power for good that will increase God's family and the number of people who trust in Him.

Thursday, September 18, 2008

Snakes and other shenanigans

The newest member of our family

My hero

Apparently, snake-handling has now been added to my rapidly expanding repertoire as a mom. So, I was performing the glamorous and much sought-after task of unloading the dishwasher, keenly concentrating on matching the appropriate sippy cup lid to its proper cup. Feeling the satisfying exhilaration of completing this task, I then move on to picking up random toys that end up on the kitchen floor---today it was a toy snake. The tiny thought crossed my mind that we haven't played with many toy snakes lately as they were usually more Joseph's cup of tea than Holly's, but I reach to pick it up anyway. This is where the excitement begins. It doesn't FEEL like a toy snake. In fact, it doesn't really look like the fluorescent green toy snake we own. I quickly toss it back on the ground, hoping I'm being paranoid, then watch it slither over to my cabinet to try to hide, as I proceed to scream, hyperventilate, scream, fly into the next room to hide in a corner, scream.

This is my typical reaction when faced with any outdoor creature in my house---whether it be a roach, spider, bee, etc., so Allen strolls into the kitchen to save the day and see what has gotten me so worked up. (Thank you, Lord, that Allen was home!) When he sees that it is an actual SNAKE, he skips the screaming and shaking and puts a bowl over it to keep it from snuggling into one of our beds or something (while I cheer him on from the corner and caution him wildly to keep it away from me). So, after a few minutes of getting it trapped between a glass bowl and a cookie sheet, my hero takes it outside to go play with its friends.

My heart is still recovering from beating so fast. I'm not sure what kind of snake it was, but it was very small. It was either a juvenile black rat snake or a baby rattle snake. Please someone tell me this was not a rattlesnake. We looked up pictures on the Internet and it did look frighteningly similar to a rattlesnake.

I really think I handled this whole situation so well that some of you may want me to come over and help you with unwanted pests (please note the sarcasm). I'm just so glad Allen was here. Holly may have been permanently scarred for life if she had to watch me try to kill the snake (which was the only thing I could think to do).

In less exciting news, Holly is doing well. Many of you have kindly asked how she is doing, and we can honestly say she has adjusted to our new life surprisingly well. I know she misses her playmate, but she seems to really understand that Joseph lives with Jesus now and that he is up in heaven, playing and laughing with no more boo-boos. She definitely wants us to play with her more, whereas before she would either play with Joseph or entertain herself for a long time without us. We've been getting together with some of her little friends, which she loves, and Winnie Kate is visiting this weekend which is the best news her little ears could ever hear.

We, on the other hand, are missing Joseph a lot and feeling his absence more strongly as time goes on. In my head I know that he is happy, whole, fully alive and with Jesus, but my heart just wants to see his little belly, his joyful eyes, hear his hearty laugh, and of course hold his little hand. Today is 4 weeks since he died, but to me it feels like it just happened. It is still so fresh to me, the wound is still raw, and I don't feel like I've "moved on" at all. But, I'm okay with that and we are trying to let ourselves grieve and heal in our own time. I have heard that there is no timeline for grief and we are definitely experiencing that. It is also unpredictable. I can be doing fine, focusing on something else, then I see a picture of him and I just can't help but cry uncontrollably. I really don't like that--being out of control of my emotions, but I suppose there is no way around it.

We don't need anything, just continued prayers for strength and endurance and wisdom. Thank you so much for everyone who has sent us gift cards, letters, notes, and meals. We have been getting the most delicious meals each week, and it is so nice to not have to worry about it. Also, thank you to everyone who has donated to St. Jude or Rally Across America. I love getting those cards in the mail, telling us someone else has given in Joseph's honor. What a blessing!
I have recently come across the blog of a lady in Oregon dealing with end-stage renal failure (Kelli). Her link is on the right on our blog. My heart goes out to her so much, as she is going through this hard trial without much help or support. We could not have gotten through these last 10 months without the unbelievable help and support of our family and friends. After reading her story, if you would like to help her by sending her family a giftcard or money, please email me, and I will give you her contact information. Thanks!

Saturday, September 13, 2008

God of the Little Things

It is hard to believe that it has been three weeks since Joseph left us. It feels like yesterday and at the same time like it was years ago. So much has changed. I decided to make a very small list of the ways God was there for us in the last few days in how the little decisions that we made correctly turned out to be huge. He is the God of the little things.

So here goes:

1. We brought Holly with us to Memphis: this was her first return trip since we moved out of the Barr's house in Feb. Every other time that we came for checkups and scans we left her with grandparents. Gillian and I were both growing concerned that she was beginning to feel left out and forgotten. Also Joseph specifically asked for her to go this time which was unusual. She got to be there with him for his last day of conciousness and although it was a little hectic getting her back here (thanks uncle Matt) it was such a blessing for us and for Joe P that she was there on his birthday.

2. We decided to stay with the Barrs: usually when we returned to Memphis we wanted to stay in the St. Jude hotel (the Grizzly House) because it was close and his appointment were always in the morning. Also we wanted some privacy to be able to discuss things if needed. But Jennifer and Matt were living in Matt's dad's house because of a catastrophic hot water heater explosion in their house which meant that they had lots of room for all of us. So we decided that it would be easier to stay with them even though they were thirty minutes from St. Jude. So we got the blessing of being with family after hearing the horrible news, and we got to celebrate his birthday with cousin WK who Joseph loves so much. We also got to see the dogs and one of the last pictures we took of Joseph was him snuggling on the couch with millie his favorite dog. It also helped us to make our quick exit from Memphis and allowed Jennifer to drive Gill, Joe and me home. If I had been driving on that trip, we would have most likely crashed.

3. I think this is the biggest; we changed one of his appointments: This is going to take a while to explain, so bear with me. I had grown so angry over the course of our time in and out of St. Jude at how long we had to wait for everything. It is an amazing place, but there is so much waiting for everything that it eventually grinds on you. They also schedule appointments in a seemingly random way. When we arrived we got his schedule for the week. It had appointments from Tuesday through Thursday. On Thursday we only had one appointment and it was with the Quality of life team. We considered skipping it since we didn't really know what it was, but I decided to see if they could change it so we could leave on Wednesday. Normally they are never able to change appointments because of all the patients they have, but she was able to schedule it Wednesday after his MRI. After I got it changed, I told Gillian and she reminded me that we had to be there Thursday and Friday anyway to start the new chemo, but I had forgotten since it wasn't yet on the schedule. Anyways, we just left it for Wednesday. So we met with a doctor from the Quality of Life team while Joseph was waking up from his MRI. The conversation was about his last days and was meant to get us thinking about what we wanted. We decided that hospice care would be best and we spent a lot of time talking about everything including what those last days would look like for him and for us. It was a great meeting and it really helped us deal with a lot of issues. At the end of the meeting he started to call around and was about to get us enrolled in the hospice care. I stopped him and said that we're not there yet. We're about to start a new chemo and we don't even know what this new MRI showed yet. Then he asked us if he could go look at it now and we emphatically said yes. Normally when he had MRIs we wouldn't hear the results until his next appointment, usually on the next day. Anyways, he came back the terrible news and we immediately got him into a hospice care. Joseph went into a coma that night and died the following day. If we had not changed that appointment, we probably would not have heard about his MRI that day and would have shown up the next day with him in a coma and his last hours would be in a hospital far away from his extended family. Instead we got to rush home and everyone got to see him and talk to him one last time.

4. Joseph made it back to Franklin: We decided to spend that night in Memphis and leave for home the next morning. On the morning he died, a hospice nurse in Memphis came to see him and told us that he didn't have very long. We didn't even know that he had slipped into a coma overnight. He had been awake from around 1-3 that morning and was talking and eating and refusing to go back to sleep. Deep down I doubted that the doctors would be able to correctly say that he only had a few days left and thought that maybe we'd have a couple of weeks, so I guess I didn't think that the end would come so quickly. When the nurse told us that he had hours, we decided to sprint home to be with everyone. Jennifer drove Gillian, Joe and me while Matt had the two girls in another car. Gillian and I held Joseph the whole time in the back seat. It was an awful drive. On two occasions he stopped breathing for over a minute and I couldn't feel a pulse and we thought he had gone. But then he would gasp and start breathing and pumping blood again. That was so painful to go through more than once, but I had been praying all morning that he would make it back home. It was like he was refusing to quit; we kept telling him that Mimi and Nana and everyone else was waiting for him back at the house with lots more birthday presents. Anyways, we made it home and was able to be with everyone again. It was totally an answer to prayer.

So there's a short list of the little ways God was with us in the end. It's amazing how so many small decisions turn out to be really big ones. He has also been with us in the big decisions and prayer requests over the past year providing physical and spiritual needs, but I can't stop thinking about how things could have turned out had He not been there for us at the end. As horrible as it all was, it was the best it could have been.

Thursday, September 11, 2008

A story and an article

Thank you so much to all of you who have sent me funny and sweet memories of Joseph. The following is a story my friend Christy wrote down that I just thought was so hilarious.

Christy’s Soda

Joseph was probably around 17 months old and we decided to take a trip to Target so that his mommy could sit down for 2 seconds together (she was about 8 1/2 months pregnant with Holly). Anywhere else and Joseph would be running at approximately 62 mph, but place him in a Target shopping cart and he'd sit there wide-eyed as long as you'd stroll him around. It was magical. So here we are, taking in the Home Improvement section, and he asks me for a sip of my Dr. Pepper. (Enter my savvy.) I say, "Sure, here you go!" (Reminder: I had not had children of my own.) Joseph takes a nice big gulp, then gives me a look of confusion and horror and delight. Priceless expression that surprised me and made me giggle. I thought he'd love it, and it hadn't occurred to me that perhaps Allen and Gillian didn't give their one-year-old carbonated caffeinated beverages on a regular basis. Joseph ponders this experience for a moment, then asks for another sip. As I offer my straw, he leans in tentatively, then jerks back with a huge grin, shaking his head emphatically. Total fake out! Fantastic! I adore a kid with a sense of humor. We played this game for another 5 minutes or so, then eventually we headed back to mommy. As I was relaying all this to Gillian later, she just laughed and said, "Yeah, he's never had soda before!" Oh.

And now for something more serious...

Anissa's article

I read an online article recently by a lady named Anissa. Her daughter has leukemia and she wrote about what she has been through. At the end of her article she wrote some tips about how to help those who are dealing with serious illness. Some of the things I never would have thought of--like that someone might feel guilty that it wasn't them.
We have been so completely blessed and do not need a thing. We have meals coming for a long time, plenty of help, love, etc. We feel very blessed that we feel like everyone has anticipated what we need and done more than we could ever imagine. Thank you!!

Here is a link to her article: (It's the second post down)

Monday, September 8, 2008

Brave and Strong

Many people have told us how brave and strong we have been as parents during this whole journey with Joseph. Thank you for that compliment, but I have to tell you that Joseph made us want to be brave and strong. We were not in denial; we knew our time was short and we wanted to make lots of happy and fun memories for him (and for us). He did not know his time on earth was short but he certainly loved life and didn't see any reason to not have fun all the time...so that really helped us. I also felt this important responsibility and focus, and nothing else mattered in the world.

I have to confess something to you. I have not always seen the role of "mother" as the most wonderful, important and sacred role that I do now. When I first had Joseph I really struggled with being bored and wondering if I was even contributing anything to the world by taking care of him. I missed seeing other adults every day and getting compliments on my work if I did it well. If I changed 10 diapers in one day and managed to do some laundry and cook dinner, I really felt proud, but it felt like "invisible" work because I felt like it only helped me and my small family.

Then when we added Holly to our family I mostly felt completely exhausted and overwhelmed all the time, trying to allow Joseph to expend energy while also letting my newborn sleep as much as she needed to during the day (which was usually 3 naps). It felt like an impossible job compounded by the fact that Allen was working insanely long hours during his last year of medical school. We did have fun, but I felt like my life was a never-ending cycle of playground-hopping/putting-kids-to-bed/collapsing on the couch at the end of the day. There was no such thing as "me" time, something I desperately needed. In fact, right before Joseph was diagnosed I didn't think I could do it for one more day. Ironic, huh?

When Joseph had that first MRI and the doctor said those fateful words, "There is a fairly big mass inside his head, and it's probably cancer," my world came crashing down in so many ways. I felt disbelief that my healthy and rambunctious boy could have something that deadly inside him, guilt that I had been so complaining on the inside over how hard life seemed, and just incredible pain and fear about the future. What about Allen's residency? Could I do this on my own? What do we do from here?

The months that ensued are the months you have read about on this blog--lots of family time, support, help, joy in the little things, and just happiness that we had another day together. So, in some ways, Joseph getting cancer was the best thing that ever happened for our family. We realized how special we all were to each other and got to spend every waking minute all together. Would I have ever have chosen this road for Joseph? Absolutely not. Do I want Joseph back in our family right now? Yes.

But one of the things I am more certain of now is that every child, every person is of grave importance to God. Those diapers you change, the meals you make, the hugs you give, even the bathrooms you scrub are all seen and recorded and valued by God. Jesus says, " 'I tell you the truth, whatever you did for one of the least of these brothers of mine, you did for me.' There are no "invisible" jobs. Everything you do matters, whether anyone sees it or not. Being a mother is a worthy job, not because it's "rewarding" or "fun," but because you are molding little hearts and minds and teaching them about God and the world he has made. And, it is not a job for the weak. If you are a mother, you are a strong, brave, hard-working, and inspiring person. You have to be to endure the terrible twos, tantrums, attitudes, spills, falls, messes, and many failures as a parent. So, if you know a mommy, give her a hug, buy her a cup of coffee, send her an encouraging note to tell her how amazing and wonderful she is.

Tuesday, September 2, 2008


"When beauty breaks the spell of pain
The bludgeoned heart shall burst in vain
But not when love be pointed king
And truth shall Thee forever reign.

Sweet Jesus, carry me away
From cold of night, and dust of day
In ragged hour or salt-worn eye,
Be my desire, my well sprung lye "

(-Hymn, by Jars of Clay)

The stars have always held me in complete awe and fascination. Allen will tell you that every time I am faced with a clear, starry night you would honestly think I had never seen stars before. And really, that is how I feel. Every time, I wonder how they could be and how could so many people see them and not believe in God. They are probably my favorite part of nature. Last night I went on a "walk," but had to keep stopping to just stand in the middle of our road in wonder. Finally, I gave up and came home, pulled our little trampoline into the middle of our backyard so I could just lie down and stare for a while. I have to tell you, of all the advice we have received on how to deal with the death of a child, this has not been one of them. But, it should. Find a small trampoline, try to lie down on it comfortably, and stare up at the stars for about an hour.

My sadness was still with me. I find that it is like an invisible blanket that is always with me. But beauty truly does "break the spell of pain" and for that small window of time, I was focused on incredible beauty and it made me realize my pain isn't the only thing I will ever feel. And, I imagined Joseph dancing from star to star, fully whole and complete and radiantly happy, and I thought how he would have no patience for me moping and being sad. (He used to get irked if I was still in my pajamas at 8:30.)

Joseph was always a presence to be reckoned with. If he was awake in the morning, one of us was awake. He would insist on it. I miss waking up and seeing his little face inches from my bed, just staring sheepily at me until I woke up. That always made me laugh first thing in the morning. I miss how he always had a plan for the day and definite ideas of what he did or did not want to do.

Our hospice nurse, Amy, called yesterday and we were talking through those last minutes with Joseph. She said that she has noticed that children, in their final hours, have this incredible strength and heroicism, and she believes it may be for their parents. They can hold on to life much longer than any adult until they feel a peace with leaving their parents. Oh, sweet Joseph, I hate to think you held on any longer just for me or Daddy. She did encourage me that Joseph let go sooner than many children she has seen, and she noted that medically he was in no pain or discomfort or distress, and that the words we spoke to him were beautiful. That has been my prayer from the beginning; that if God were going to take Joseph, that he wouldn't feel any pain at all. That, I could not have handled.

But, I started thinking about Joseph being heroic and now that I look back, he was incredibly heroic in those last few weeks. Probably two weeks before he died, he and I went to the museum and he climbed up a long slide, numerous steps and other climbing things until we were at the highest point in the museum (which is above the 3rd floor, I think). He just kept going, so determinedly and joyfully. I think he remembered being able to do it before and so he just did it. But by the time we got to the top, he was ready to go home. So we went and sat and had a snack and he was delighted to get to pick one out of the snack machine. But, I keep thinking, at that point his tumor must have been fairly big, causing some pretty intense pressure, and his limbs were not working as well as they used to, yet he just wanted to accomplish this feat.

We had been asking him for days if he wanted to go to the museum. He loved the museum in Memphis and it was always a fun outing for him. We just wanted him to enjoy himself and be able to have fun like any other kid, but looking back I wonder if he wanted to make us proud and show us how big and strong he was. He did have a lot of fun, and I was so proud, but it did completely wear him out; I would have been just as proud of him if we had sat at home and watched TV or played with play-doh.

Our sweet little boy. I miss him so much. Before he was born I never knew my heart could hold so much love. Now I can't believe it can hold so much pain. The only thing that is enabling me to wake up in the morning and live life at all is the fact that I knew Jesus before I knew Joseph. I trust Him even as I'm mad at Him. I look at it like marriage. There are times I don't like Allen very much and am so mad at him, but we are still married. My feelings don't make us un-married. And I'm grateful that God can take all my feelings and as Allen has said, He doesn't let us go. I'm still His child, no matter how much I rage against Him. I can be honest with Him and he still holds me tight.

As a side note, we have been receiving the sweetest notes, cards and letters in the mail from old friends and even "strangers," letting us know how much Joseph has impacted them. That is just amazing to us, but it really does encourage us to know that God has used his life and struggle to encourage many people. Thank you for letting us know. I have also thought about putting together a little storybook for Holly of funny "Joseph" stories so she will always remember him. If you can remember a story and would write it to me in an email or a letter, I would be so grateful (even if it's a story where he is being more naughty than nice). Thank you for continuing to pray for us....

Friday, August 29, 2008

A Promise to Joseph

Here is a video of Allen and his friend John Moessner singing the song Allen wrote for Joseph. They are both wonderfully talented musicians, and I am not at all biased in saying it is the most beautiful song ever. I almost had to threaten Allen to get him to sing it at the Memorial/Funeral...so you can all thank me for persuading him (with a little help from Sarah-Jane). And thank you, John, for joining Allen in making it even more beautiful. Al wrote it several weeks ago, and the first time I heard it I knew he had to sing it at Joseph's funeral, whenever that would be. It turns out it was much sooner than I expected. Here are the words:

A Promise to Joseph

I can't stop the rain from falling
It's been raining for so long
I can't take your pain away
Or find what's right inside the wrong

But take my hand, we'll go through this together
And I can help you to stand
I don't know what tomorrow will bring us
But you'll know where I am

I can't stop the night from coming
Or turn the darkness into light
There's so much I cannot do for you
But I can give you the strength to fight

But take my hand, we'll go through this together
And I can help you to stand
I don't know what tomorrow will bring us
But you'll know where I am

There is one who can do all things
Can stop the rain and end the night
He'll bring you peace and restoration
And turn this wrong into a beautiful right

So take His hand, you'll walk with Him together
Before His throne you will stand
We'll be fine with the peace He will bring us
And I'll know where you are

Wednesday, August 27, 2008

Joseph's Memorial

Picture on Program drawn by Aunt Jennifer

Joseph's visitation lasted every bit of four hours. We saw so many old and new friends and people who only knew him from the blog. Many from Atlanta made the trip as well as friends from across the country and lots of family from overseas. It was overwhelming. While it was draining, it was also greatly encouraging to see how Joseph's short life had touched so many people.

The funeral was such a beautiful service. At the beginning of the service we were treated to some video of Joseph being his wild, funny, sweet self. We sang a few hymns and heard some great music. One of Gillian's sister's friend knows Natalie Grant who wrote the song Held that has meant so much to Gill; and she was able to be here and sang it for us. It was an amazing moment. We heard from Aunt Jennifer, Uncle Matt B., and Uncle Sam as they told stories about Joseph and shared their thoughts and their pain. Then I shared a few thoughts and played a song that I wrote for Joseph over the past few weeks. Since Gill usually shares her thoughts, I'm going to just post what I said for those who couldn't be there:

Thank you all so much for coming. Joseph would have loved seeing all of these people together at one time. He was definitely a people person. He always had to be with one of us all the time, until we started making him have “room time” a few months ago so that he would learn to entertain himself at least a little. But there is no doubt that he was happiest when he was around people that he loved and I can only imagine his face to see all of his friends and relatives together in one building.

Way back last year a few weeks before Joseph’s original diagnosis, our good friends the Slotkins had to watch their son Luke die in their arms. I was talking with BJ sometime after and trying to put myself in his shoes and all I could say was that he was handling it unbelievably well and that God would never let that happen to me because I couldn’t handle it half as well as he did. I said that I would probably in anger chuck all of my beliefs in the goodness of God and would turn away from Him. Now that we’ve gone through so much with Joseph, I tell people that it’s not that I haven’t given up on God, but that He hasn’t given up on me. He won’t let me go. Every time I am angry beyond control at Him, He refuses to leave me alone. We definitely struggle with believing in God’s goodness. I now feel that the phrase God is good all the time, and all the time God is good has to be chanted over and over and over again until it’s driven in your head. God is good, it’s just that our understanding of what is good is so limited. Another phrase that I have repeatedly repeated is that He is God and I am not. He is God and I am not.

Throughout all of this past year Gillian and I have seen and felt the body of Christ supporting us through physical needs like meals and presents and cards, but especially through prayer. There is no way that we could express adequate thanks for everything that everyone has done. Gillian and I also want to thank our families who have helped us in so many countless ways. From free babysitting from all four grandparents, to housing from Jennifer and Matt and the Taaffes, but mainly for just being around for Joseph and helping his time here on earth even that much sweeter.

Now about the boy, cause that’s why we’re here. I want to tell just a few of our favorite stories about him. My new favorite story of all time actually happened last week. Our friends from Atlanta the Slotkins came up with Joe’s best buddy Logan for a weekend visit. Joseph was so excited to see him. Anyways, on Sunday before they left all three of the kids were playing in the play room. Holly snatched a toy away from Logan and he retaliated by pushing her while trying to get it back. Joseph didn’t see that Holly started it and even though he could barely walk, he marched over to him and just let him have one. Of course we don’t teach out children to hit, but seeing him want to defend his sister was so sweet and shows so much about him. He was passionate and fiercely loyal. He loved his sister so much even though they didn’t get along all of the time.

Joseph had so many trips and adventures during his last few months. We went to Disney world, Florida a couple of times, and we tried to do just about everything that we thought would be fun for him. But I noticed on all these trips that he was actually more excited to go home than he was during the trip. He loved being at home and he loved the normal day to day life. All he wanted was Mommy, Daddy, and Holly. There’s a lot that I have learned from him and his life, but I keep coming back to this lesson. We should all take the greatest joy in our day to day living and just being surrounded by the people we love.

Gillian and Holly and I and the rest of our families are hurting and missing him so much. I will continue to miss him until I see him again in heaven. But although our pain is real and seems unbearable, we have tremendous peace knowing that he is no longer suffering, that he has a new body that is tumor free, that he is at this moment in heaven being held by his eternal Father. And though we don’t have answers for the questions of why this happened, we know that God is God and we are not and that he is good all the time.

Anyways, thanks to all those who made such an effort to be there for us this weekend. We are truly grateful to have such a strong group of friends and family that are supporting us. We are indeed hurting and strugling to make sense of life now. Please continue to pray for us and for Holly.

Friday, August 22, 2008

Funeral Plans

Just a quick note to tell you about Joseph's memorial and visitation. The visitation will be on Sunday from 4-8 at Christ Community Church in Franklin. The Funeral will be at the same church on Monday at 10 am. If you need directions click here.

We appreciate and are overwhelmed by all the support we are receiving. Thanks for your continued prayers for us and for Holly and the extended family.

Thursday, August 21, 2008


4 years was too little. We let him go. We had no sudden healing. To think that providence would take a child from his mother while she prays is appalling. You know the rest of the words. They have been resounding in my head for the past few weeks. I feel the Lord gave me that song as a comfort but also a gentle preparation for the future. Sometimes as I listened I would just weep, other times feel immense joy and peace. Now I just feel sadness. Sadness at death and loss and that we will miss him so much it hurts. I already do miss him...his sweet personality, his great love, energy, radiance. I truly do feel special that God chose me to be his mommy.

I have always felt an impulse to tell Joseph how proud I am of him. When he was born and I got to hold him for the first time, those were the words that kept rolling off my lips. "I'm so proud of you, Joseph. You did such a good job." It felt a little strange to me, but I felt like the words were not really coming from me...that God wanted me to say this to Joseph. Even as he grew up, I always sensed that he loved encouragement and it spoke volumes of love to him, more than a hug or a kiss. He longed to please, to do the right thing, to make mommy and daddy happy. Today as he was holding on to life with a thread, I sensed I needed to tell him what a good job he was doing. "I love you, Joseph. You are doing so great. I am so proud of you. Just relax and go to Jesus. Mommy is here with you." I think he was holding on, maybe not sure if he was failing us somehow by letting go. But the hospice nurse said they can hear everything, so I was more sure I wanted to tell him how great he was doing. Allen sang him his favorite song, "The fox song," (by Nickel Creek) then I told him his final "Target story" and he went to his final rest as I was telling him that story. As gruelling and heartbreaking as his last few hours were, those final moments were nice and I did feel he was at peace and went very peacefully.

Now we are left with the pain, the memories, the knowledge that there will be no soccer games, no first day of school, no more cars and trains strewn all over the house. Oh, how I will miss that. How I will miss being needed. He has been my job, my responsibility for the last four years. My life has been devoted to raising him, loving him, teaching him, being there for him, protecting him. Even after he died and he was lying back there on our bed, I felt the need to be with him as others said goodbyes. He always wanted me with him and I felt I needed to protect him and make sure he was all right with people coming in. I feel like my other half is gone. He has been my constant companion. I always felt like he needed me so much, and sometimes I wished he didn't. Now I realize I need him too.

I am very thankful for Holly. She is a bundle of joy and delight, and has kept me laughing and dancing in the midst of this intense pain. God in His wisdom gave us Holly at just the right time, and she is His gift to us that I know will keep us from falling into despair. These verses have been on my heart last night and today: "Behold I am with you always, even unto the end of the age," and John 10:27-29: "My sheep listen to my voice; I know them, and they follow me. I give them eternal life, and they shall never perish; no one can snatch them out of my hand. My Father, who has given them to me, is greater than all; no one can snatch them out of my Father's hand." This last verse, all I could remember was that "no one can snatch them out of my hand," so I looked it up and found the whole passage so comforting. At a time where my feelings betray me, God's Word is giving us great hope.

We are still working on the details of Joseph's memorial and funeral, but we are hoping it will work out to do a memorial on Sunday afternoon/evening and have the funeral on Monday. We will definitely post when we know for sure. Thank you all for your kind comments...they truly have been a great comfort and encouragement.

The End

Joseph died today at around 2:00 in our house. We rushed home this morning not knowing if we were going to make it home before it happened, but we made it in time for most of the family to see him one last time. He passed in our bed and was not in any pain at all.

We don't have any plans yet for the funeral, but will let you know later. Thanks to all for your many prayers. Sweet Joseph is now at peace.

Wednesday, August 20, 2008

More Sad News

Joseph continued to decline today. His MRI today showed that not only was the tumor back, but it was four times as large as it was after the surgery last month. He also had significant hydrocephalus (swelling) from the tumor blocking the drainage of the spinal fluid from his brain; but the MRI also showed evidence of some herniation (which basically means that the pressure was so high, it forced the brain into areas where it shouldn't be). With all of this going on, they said that they do not expect him to live more than a few days. We figured that he was having some tumor regrowth and knew that these new symptoms were alarming, but we were not prepared to hear this news.

So, after talking with a quality of life doctor, we all decided that the best course of action for Joseph is to take him home, make him as comfortable as possible, and keep him pain free. There are some things that they could do to relieve the pressure, and we could start the new chemo, but they used the term "days" to describe how much time those measures would buy us. We definitely feel that he has suffered enough and to put him through more surgeries or even another IV stick would be cruel.

We are really grateful we got to meet with this new "quality of life" doctor. He is a neuro-oncologist who is starting up programs in hospitals to help families adjust to life with a very sick child. Speaking with him today was very informative and helpful and gave us a lot of peace about the immediate future. He was able to read his MRI scan and tell us exactly what was going on, but he was also very emotionally supportive and encouraging to us as parents. I had prayed this morning that God would send us someone to help us know how to help Joseph in these last days, and this man was a definite answer to that prayer.

We are spending the night here in Memphis with Jennifer and Matt and then we'll be leaving in the morning for Nashville where Joseph will get Hospice care at our house. He isn't in constant pain, but he can get pretty severe headaches, so we'll be giving him medicine whenever he needs it. He is very lethargic and has been sleeping most of the past two days.

Thank you everyone for the birthday wishes-- the only times that he was happy and smiling today was when he was opening presents and talking about opening presents. Please keep praying for us: that Joseph would be pain free, that we would have strength to get through this, that we would feel peace about everything, and that our final days together would be special.

Not doing too well

Okay, so I lied in the last post. Here's a quick update. Yesterday joseph continued to grow weaker and since we were in the car most of the time we didn't really notice it that much. Early in the morning he woke up with a severe headache and vomited. Then all day today he was unable to stand or even sit up. He seems to not be able to move his right side of his body. He did great at St. Jude but that's probably due to just being weak; he wasn't able to give his usual effort in fighting the needle. He only had a PET scan today and they couldn't really tell us anything about what's going on. The MRI tomorrow will tell more, but we kind of know what's going on based on his symptoms. Hopefully after the MRI, we'll be able to start Avastin on Thursday and Friday and then come home.

He is very frustrated and down about not being able to move. Pretty much the only thing that is keeping him somewhat happy is that tomorrow is his birthday and we have told him about the many presents waiting for him. Other than the headaches, he isn't in any pain; but we can't give him any medicine to help him understand what's happening or make it easier. Obviously, we are also pretty depressed about his quick deterioration as well.

We'll try to update again tomorrow after the MRI. Please keep praying for him.

Sunday, August 17, 2008

Veggies Videos

Blogger wasn't loading the videos on the last post, but it's working now. Here is Joseph meeting the real Larry. His paralyzed side is facing the camera, but you can still see a huge smile on the other side. The second one is the kids playing various whistles and instruments in the music room.

Also, we probably won't post until we get back from Memphis on Thursday, so be praying for our visit. We're going to try and take Holly because both she and joseph want her to go. He has a bunch of scans and tests and then hopefully he'll get his first avastin treatment IV. Honestly it didn't feel like we were going to make it to this point and getting here seems like a mini-goal accomplished. I think what we are mostly hoping for is that the avastin/cpt-11 shrinks whatever is there that is causing the symptoms. He now has to be holding hands with someone to walk without falling and he has started having some shaking in his arms when he uses them. It would be great to have some improvements for a change instead of steady worsenings. Above all the hope is that avastin will kill the tumor, but like Gillian said a few posts ago, we are being realistic and know that this is not the expected outcome.

We really do appreciate and depend on all your support. Thanks for keeping us in your prayers.

Friday, August 15, 2008

Veggie Tales

We love Bob the Tomato!

Joseph practicing his art
The "real" Larry the Cucumber!
Joseph painting Joseph
Joseph riding his Lightning
Making music

Yesterday we got to go on a tour of the Big Idea studios where they make all the Veggie Tales videos and movies. We got to meet the the man behind the voice of Larry the Cucumber which startled and confused the kids (but once he held up a toy Larry they all got it and thought it was amazing). Our friends from Atlanta the Slotkins are here for the weekend, so Joe's best friend Yogi got to come too. They did some painting on the computer, played with some of the instruments in the music room, and Joseph had his picture drawn by one of the artists (It was such a cool office, by the way...musical instruments, art, big fluffy Bob the Tomatoes to sit on, computers you can paint on. Come on, can this really be called work?) They had a great time and we are very thankful to Melissa and everyone at Big Idea for letting us come and interrupt the day. Everyone there knew about Joe and his story and were very gracious and sweet to him. He was treated like a little king.
At the end of the tour, Joseph started crying because he thought he was going to a Veggie Tales store where he could pick out a toy (I don't think he quite fully grasped the idea of a studio and that Larry and Bob aren't real talking Veggies). He was almost at tantrum level when I told him we could go to a store and buy something afterwards. Then as we were about to leave, they took us back to the lobby where there were three baskets filled with toys and books and movies for each of the kids. They were all so excited and happy. Thank you, Big Idea, for a wonderful morning!!

Wednesday, August 13, 2008

Disappointment with God

Holly is Daddy's girl.

Holly and Bella enjoying the great outdoors
Joseph has discovered online shopping!

Bella and Joseph, overjoyed to see each other
Aunt Sarah-Jane and Nana playing beauty shop with Holly

These are some picture from our weekend with Bella and my very dear and sweet sis, Sarah-Jane. As you can see, Holly loved having a girl to play with and I think it was a good distraction from all that is going on with Joseph (and I loved having my sister there with me). Allen had a night away with his Dad and brothers to a lakehouse, where they enjoyed boating and fishing. We were all very glad to have him home since Joseph had a rough weekend.

Right now Joseph is in much better spirits and his usual smile is back on his face much more often. I don't know if it was tiredness or just not feeling good, but this weekend he was very grumpy and clingy and just physically not doing well. He didn't leave my side for more than a few seconds at a time, until Daddy came home. Then he was happy again and left for Target with him with no problems leaving me. Go figure! I think his turn in mood resulted from a very good nap on Sunday, just starting to feel better overall, and excitement at Daddy being home.

He is still taking steroids, although we are trying for a third time to wean him off....very slowly.

Joseph is continuing to press on, trying to run and play, but then getting discouraged when he realizes he is way off balance and really needs a hand to hold in order to stay up. While it is encouraging to see he desires to play, it is very painful to not be able to make it all better for him. To watch him watch others play and do the things he used to be able to do with ease is torture.

Someone recently asked me, "Do you feel like you are sitting on a ticking time bomb?" My thought was, "No, it feels like someone is slowly ripping me apart." I hope that isn't too graphic, but I can think of no other way to adequately describe it.

We waffle between hope and despair almost hourly, depending on Joseph's symptoms and mood. I want to hope, hope, hope that Avastin works or that God steps in to save the day miraculously, but then sometimes it just seems impossible.

Aunt Sarah-Jane read to us from our "Read Aloud Bible Stories" book at dinner the other night. The story was about Jesus healing the blind and making lame people walk. Joseph was listening so intently and soaking up the hope that was in those stories. I thought to myself that I often put so much hope in a new drug or the right treatment, when for God it would be so easy to say, "Be healed." Why he does for some people and doesn't for others is a painful mystery.

I admit as I've gotten older I have become more cynical and skeptical than I'd like to admit. It is so hard to see such pain, evil, and disappointment and believe in a good God. A friend of mine gave me the book "Disappointment with God" (by Philip Yancey) about a year before we found out about Joseph's tumor. I found the book so respectful and sensitive to questioning people, and the best part was that he didn't have all the answers. But I loved the way he searched the scriptures and the heart of God to try to make sense of the evil and suffering we experience.

One of the questions in the book was "Why didn't Jesus heal ALL the people he encountered?" I believe he referenced a story where Jesus healed a man at a pool, but didn't heal all the rest. How could he single out that one man and not have compassion on all the men/women? Well, that got me thinking, "Yeah, why not?" Yancey notes that God is always more concerned with our spiritual healing than our physical healing. In the Old Testament he gave many signs and wonders and miracles and it still didn't produce the faith and belief he desired. In the end we will all die, and at that point it won't matter how healthy our bodies are but whether we have responded in faith to the love of Jesus.

I am definitely not doing justice to this wonderful book, and am probably butchering the examples, so I would recommend just reading it.

I am sorry this entry is so "all over the place" but I have to write everything in the small time slots I have where I am not needed....so there you have it. Thanks for listening. Thanks for praying and walking this journey with us.