Still cancer free

Today Steven had his one year exam/scans/labs/Dr. appointments, and everything looked great. Both Dr. Jones (his orthopedic surgeon) and Dr. Wright (his oncologist) thought he looked amazing. Dr. Jones was super impressed with Steven's Xrays--his leg has healed beautifully from the break last year about this time. We saw Dr. Jones before we went to the oncology clinic and he told us that Steven's chest CT was clear. That was a huge relief and we knew that by about 11am, so we were able to relax and go to lunch before Steven's clinic appointment. Steven was just thrilled and became his usual happy and enthusiastic self. After his appointment with Dr. Jones, he went into the waiting room and announced his good news to the friends we had made while waiting. I really can't express just how grateful I am. I've been going over in my mind how I would be able to handle bad news right now and I couldn't quite envision a good scenario. Thankfully that was a fruitless exercise! Hooray for good scans!

A long status update that really is only the tip of the iceberg...

I have been feeling like I should post something, but I can't believe how hard that is for me to do right now. It seems like doing much of anything is hard these days, let alone spilling my guts to the public on my blog. While lenghty, this is still a very vague report of some of the things I've been feeling lately:

I have certainly been feeling depressed--or is it just the grief? I don't know if there is a difference, but everything I do is slow and difficult. The other day I told Laura she had to wait until I took a shower to watch a TV show. After I got the kids off to school, I crawled back into bed. Laura kept pestering me to get up and take a shower (so she could watch her show) and so finally I did. I thank Heavenly Father every day for these kids I have--I love them so much and also, without them I might be a permanent fixture in bed!

I've been feeling very loved. So many people have done so much for us. I have a stack of thank you cards by my bed and everyday I tell myself "this is the day to start writing those..." but somehow they are still blank. Maybe tonight. I still can't get over the beautiful piano in my living room. Wow. And then there are little things that people say and do that remind me of the outpouring of love and support from everyone around me.

I have a bit of anxiety and I suspect it will get worse throughout the week. I wonder if I would feel it more now if I weren't so numb. On Friday Steven will have his one year full exam and scans. We scheduled them a month late because we were supposed to be busy in November...sigh. Anyway, now I feel like all my happiness rests on a positive scan outcome. I spend a lot of time in my mind trying to convince myself otherwise. I am relearning hope and faith and trust in God. As hard as it is for me to accept, it boils down to this--Steven will live as long as he is supposed to. I just hope and pray that he supposed to live for a very long time.

I haven't been much in the mood for Christmas--I think it is just that I don't feel like celebrating much right now. Shopping, decorating, holiday baking--those don't sound a bit fun. However, I am slightly obsessed with a certain Christmas present I am hunting down. I'll keep you posted. When I can't get out of bed, I pull out the handy IPad and search.

And along with it all, I am missing little Daniel. I don't need to hold his teddy bear to be able to sleep anymore, and I don't cry every time I think about him now. But I sure still wish he were around and I had a room full of baby stuff and someone to wake me up at night and warm little bundle to cuddle. I often feel purposeless. My arms still ache sometimes. Again, glad that my other kids demand a little bit from me still.

I wish I could end with something insightful, or at least hopeful. I guess I could tell you how much I hope I can crawl out of this difficult place. I hope that Steven has good scans. I am hoping that my sister, Alisa,gets into the trial she wants. So, lots of hoping going on over here! (Is that a hopeful enough conclusion? I guess "hoping" isn't really the same as "hopeful" but whatever...I better stop!)

Thankful

The last few weeks have been so emotional for me, and frankly a lot of those feelings are sad ones. But the sadness is often all mixed up with overwhelming love and gratitude. So many people have reached out to us--from our dearest friends and family to people we hardly know. Each card, message, comment, phone call, meal, and gift just means the world to me. Each reminds me that we are not alone. And while I have so many things to be grateful for this Thanksgiving, I think I must say I am most thankful for the people in my life and for all you do for my little family. Thank you!

Snow

My sisters and I spent hours looking for the perfect white outfit and blanket to dress Daniel in for his burial. We finally found just the right thing, but it didn't compare to the gentle white blanket that God covered his grave and the whole valley with this weekend. Everytime I looked out the window at the falling snow, I felt like the heavens were crying with me. And part of me was hoping it wouldn't stop so I could just be swallowed up in it too.

I had Rob drive me to the cemetery this afternoon--I needed a picture to remember this blanket of white on my baby's grave.

My angel baby

I wish I had different news to report, but this is my reality and so I have to tell you about my broken heart tonight.

On Saturday morning, I delivered a beautiful baby boy, but he was stillborn. We named him Daniel Robert. He weighed 7 lbs 10 oz and was 19.5 inches long. I have never known such sadness in all my life. What I would give to be taking care of him and to tell him over and over how much I love him.

So many people want details and they are painful to relate. I hope that if I can share some here, then I will have to explain it to less people in the future. Don't take that to mean I don't want to talk about it, because I do. But the circumstances are hard to tell over and over again.

On Tuesday, I had my 38 week doctor's appointment and all was well. My entire pregnancy has gone so well--hardly a complication in sight. We had a busy week with Halloween and kids home from school Friday and then I've been working as hard as I can to get ready for my baby's arrival. Friday night as I was going to bed, I wondered to myself if I had felt him kicking lately. I was a little worried but, I was tired and I went to sleep wondering. When I woke up around 3:30 am, I was suddenly panicked that I hadn't felt kicking. I did all I could to wake him up and when I couldn't, I woke up Rob and made him take me to the hospital to see if we could find a heartbeat.

We left our kids sleeping at home and I arrived around 4:30 am. After checking in, the nurse used the doppler to listen for the heartbeat. She wasn't finding anything. I have experienced this before with a miscarriage and I knew right away that he was gone. I started to cry--wail really. I was hoping beyond hope that there was some mistake, and I waited for the doctor to confirm it with the ultrasound. But I knew and my heart was breaking. How could something like this happen? How long had he been gone? How much suffering can one heart take?

I had eaten a little cereal and juice to try to get movement and so we had to wait to perform the C-section until my stomach was empty. It felt like a long wait, but in some ways I didn't want to lose his precious little body--denial felt easier with him inside me. Rob's dad came and gave me a blessing which was a huge comfort. He then went to our house to be with our kids as they woke up. As we waited we cried and prayed and talked about names. How could I be so unprepared to not even have a name? The nursing staff was amazing and were a true comfort to me throughout. My doctor was out of the state and so his partner took care of me--she was excellent too. The surgery went well, but I was worried the whole time. What would he look like? Could they tell why he died? The hardest thing was the silence. I've never had a vaginal delivery, but with my other C-sections, I can feel the baby come out and then shortly after they cry and that is the most magical moment there is. This time there was silence. I think seeing his lifeless body was the reality moment for Rob. I couldn't see the baby, but Rob could and Rob was crying. Heartbreak. I held little Daniel for the first time there as they sewed me up. He was darling, but his little body was staring to deteriorate. They think he had been gone for a day or maybe even two. There was no sign of what went wrong.

In recovery, I got to hold him even more. My mom and sisters came. The nurse helped dress him in nice clothes that my sisters had brought. A lovely organization called "Now I Lay Me Down to Sleep" came and took pictures. I wanted to hold him but mostly I wished he were alive. I wanted him to know how much I love him.


 

Our kids took it hard. I have long believed that Steven had prayed this little baby into existence--he wanted a little baby in the family so badly. When they came to see him, they cried. Addie didn't want to see him, but the others did and Andrew even wanted to hold him.

That night as my mom was putting Steven to bed, he said to her, "I guess my family just isn't very lucky."

They let us keep Daniel's body as long as we wanted it and so we kept it throughout that day. I had my brothers and sisters, our kids and both of our parents come and say a prayer with us in the hospital that first night while we still had little Daniel's body. My dad gave me a sweet blessing and then we all said goodbye. It was time for me to send little Daniel to the hospital morgue but I couldn't do it. I kept him for a few more hours and then finally I said goodbye. I told him about all the things I had hoped for him and about all the people who loved him. And I kissed his soft skin and thought I would die of a broken heart.

The next days were too quiet. It all felt so wrong. I did okay when I had visitors. But when they left there was the silence again. And the empty arms. I could only sleep if I held a little teddy bear that some friends had brought. I was discharged on Monday morning, but I didn't want to leave. The nurses had told me that they wouldn't send his body to the mortuary until I left. I wanted to be in the same place as my little boy. It felt like another goodbye. But all the time I needed my kids. I needed to hold them and help them and just be with them.

 And so I went and when I got home there was a beautiful piano with a big red bow waiting in my living room. I felt like Beth in Little Women when she is given a piano--absolutely overwhelmed with emotion. My family had organized a group gift from friends and family for Steven and for our whole family. Unbelievable.

 

And now when my heart feels like it can't take the sadness, I go play the piano and I am calmed. The sadness is still so close to the surface.

Laura asks questions like, "When will Daniel come alive again?" and "Is there another baby in your tummy?" I can cry at the drop of a hat. We are still making arrangements for a graveside service and burial. I still need to hold the teddy bear sometimes. This is so new that it is hard to make sense of why. The grief is so palpable sometimes. I will be going along and it will rise up in my throat and choke me. But through it all, I do know one thing. I know that I will see my little Daniel again someday. I know that our family has been sealed together forever and that we will be together again when this life is over. I know that Jesus is taking care of him on the other side. I think that he just needed to come and receive a body because his spirit was so perfect. He has already touched me and changed me forever. I know I will be a better person because he is a part of my life.

I would so much rather be changing diapers and missing sleep to feed a baby than to deal with the grief that this has brought. I would rather be picking out a crib than a burial plot. I don't understand why this has happened to us. But one thing is very clear and that is that we have a lot of people who love us. Steven thinks that we aren't very lucky and maybe there is truth there. But we have the most amazing friends and family in the whole world. We have the gospel and we know what happens when we die. And now we have an angel baby to watch over us. I know this is a long post and very sad. I'm sorry. I don't know how much I will feel like writing about this in the future, so you get it all at once. I suspect that this sadness will take a very long time to go away. So many people have done so much for us. I have so many emails to respond to, but when I try, I just can't. It isn't because I don't appreciate every word of encouragement you send my way, I just don't have the energy. The first lesson that I have learned from this is that life is so fragile and children are so precious. Please tell your kids you love them and hold them a little closer tonight when you think of little Daniel.

Cyborg

Steven has been on the lookout for amputee themed costumes ever since he decided to have his leg amputated. Here is what he came up with this year--every time we took a picture, he had to pose with a serious face. I mean, cyborgs don't smile, right?

He is doing really well. One new development is that his hearing has deteriorated in the last year to the point where the audiologists are recommending hearing aids for him. I have noticed a change, but the thing that has concerned me the most is his speech. I have had his speech evaluated and they told me to first test his hearing, and so I moved up his hearing test (scans and exams are all scheduled for December) and have been working to get that done before the baby comes.

Steven isn't too excited about the prospect, but I think he is hoping it will help him. His main concern is that people will stare at him even more. One of his regrets is that he didn't have them for his cyborg costume today. He will get them next week and so we will see how that goes.

And yes, it won't be long until we are a family of seven! It is almost too much for me to wrap my mind around. I know things will get crazy around here (oh wait, they already are!) but I am so excited to hold a new little baby. The kids can't wait either. We are in for a wild time the next few months! Hopefully I'll get a minute to keep you posted when the little brother arrives.

One year ago today...

...we left the hospital, finished with Steven's chemotherapy! I felt scared, and happy, and relieved. A year has gone by and I can't even imagine going back to that place. We have come so far. Steven is doing so well and, in many ways, I've put the cancer and the fear behind me. When I am feeling weak though, fear sometimes finds its way in. But mostly, I have moved on.
Of course, even without the cancer variable, there is still so much to worry about. Steven's walking and talking and hearing are the biggies. But even when those concerns weigh me down, I think about Steven who is very happy with life. He's not one bit worried about that kind of stuff. He excitedly told us at dinner how they've switched from soccer to football at recess. His leg doesn't hold him back from trying anything he can. It is hard to believe when I see him now that he took his first real steps without crutches only in March of this year. Since the day he left the hospital a year ago, he has had some hard times--a broken femur and another surgery. Now he has even taken his first running steps--it is amazing. He still has a long way to go. I've been wanting to share a short video we made for my family's film festival this year. Steven has made so much progress since he got his first prosthetic leg in September of last year until now. One thing that is hard to capture is his enthusiasm and perseverance. He is a great kid and we are so proud of all he's accomplished.