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!

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.

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!

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.

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)
http://rocksinmydryer.typepad.com/shannon/

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.

Hero

"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....