Wednesday, 29 April 2009

A Little Good News

We received a grant from Shaohannah's Hope/Show Hope for $3,000!

This is a huge blessing for us. We had been turned down for the other grants we had applied to, so we had gotten a bit discouraged at our prospects of receiving a positive response. Also, we just plain needed some good news.

Shaohannah's Hope was set up by Steven Curtis and Mary Beth Chapman after they adopted from China. They named it after their daughter, Shaohannah, and began providing adoption grants and working to spread awareness about our responsibility as Christians to care for orphans. The organization has grown and expanded, and they recently changed its name to Show Hope. Show Hope's most recent project is a medical facility in China to provide care for special needs orphans. That project is named in memory of another one of the Chapmans' daughters, Maria, who was tragically killed in a car accident.

In the brief interactions that I had with the staff of Shaohannah's Hope I was really impressed by their kindness and helpfulness. At one point I had some concerns over whether or not a document had arrived, and they responded so graciously to my crazy-adopting mom paperwork stress. I really appreciated that. And we appreciate the grant, and are thanking God for the Chapmans' love for orphans and vision for adoption, and the generous contributors to Show Hope.

Monday, 27 April 2009

Not Ours

The baby that our lawyer found for us was claimed by his family during the process of declaring him abandoned. We are very happy for the baby, but very sad for us. We are so tired.

Friday, 24 April 2009

Still Waiting...

I thought I would post a quick adoption update. There are no real updates. I feel confident that our agency is making sure that we are on Isaac's mind, and that they are prodding him to gather the necessary paperwork as quickly as possible.

My frustration is that we were told in mid-March that he had located a baby for us, and that he would be gathering the paperwork for us to travel in April. Obviously, this has not happened, nor will it happen. At this point I am just hoping the paperwork will be here before the end of April.

As much as we have tried not to attach to the idea of this baby, it hasn't worked very well. Typically, we wouldn't have been notified that Isaac had selected a specific baby for us until the paperwork had been finished, but due to some circumstances beyond our control Isaac needed to reassure himself of our continued interest, and the information ended up being passed to us. Information I didn't want. Information I now wish I didn't have. Information that is making my life much harder.

My biggest fear is that the baby he is gathering paperwork on will not work out. Now that there is a living, breathing baby with "our name on it," I am once again facing the possibility that some bad could happen to "our" baby. Up until this point our international adoption process has not brought up loss issues for us. That was nice. But since we got that phone call a month ago, our adoption has grown more real. And in our reality babies die.

Please pray that Isaac would have an easy time finishing the paperwork gathering. He needs: medical information (including an AIDS test), a birth certificate, and an orphan declaration. Pray that he places this work at the top of his list, and that the bureaucracies he must deal with will work speedily. I just don't think I can take another month of this.

Pray for us as we continue to live in uncertainty. We are adjusting, and God has been providing some much needed stability in other aspects of our lives, for which we are very thankful.

Friday, 17 April 2009

Sharing Our Story

This week Jeff and I took part in a parent panel at a perinatal loss seminar for nurses in the Chicago area who work in Labor and Delivery and Neonatal Intensive Care Units. We were one of four families who agreed to share their stories. Two of the families had unexpected and unexplained stillbirths, and the other family believed they had a healthy pregnancy but found out within days following birth that their daughter would not survive for very long. As the only couple that had any warning and time to prepare for our baby's death, it was very odd to note the similarities and differences in our experiences. I am very grateful that we had a period of time to get ready for Leah's birth. As hard as it was to continue our pregnancy knowing that the outcome would be terrible, it is clear to me that the time we had to process our loss benefited us (and of course, benefited Leah, which is most important). We had time to make a birth plan, find a photographer, order an outfit, make blankets, and make the outlines of a funeral plan. We were able to have our family and friends surrounding us when the time arrived to deliver.

Hearing the stories of the other families was difficult. The hardest thing for me was seeing how burdened by grief they still were, when all of them had losses that were farther away than our loss of Leah. Honestly, half of what gets me through each day is the thought that someday things might get better. Seeing other parents in a place that doesn't appear to be much better than where I am right now two, three, or five years down the road was really discouraging. I came home from this event emotionally and physically drained. Based on what I saw the future looks grim. I struggled to do anything for the rest of the afternoon, and ended up settling on making a casserole for the freezer and doing some quilting because I just didn't have the energy for school work. I am thankful that we had a chance to share our experience so that hopefully other couples going through a perinatal loss will receive compassionate care.

I have previously shared how much having beautiful pictures of Leah has meant to us as we grieve. We have an almost completed scrapbook, a regular album, and pictures on our walls. Having those pictures has been a great comfort and a wonderful way to share our experience with our friends and family. One of the things that was very important to me yesterday was to emphasize the importance of pictures to our grief journey, and share with the nurses the mission of Now I Lay Me Down To Sleep to provide grieving parents with professional photographs free of charge. I had contacted our photographer, Deanna, and she sent me NILMDTS brochures to take with me, and I also brought a few of our photos. I was amazed that many of the nurses had never heard of NILMDTS, and was pleased to pass out almost all of the brochures and show off our photos of Leah so they could see the quality of the NILMDTS photographer's work. It was really nice to be able to share this resource with the nurses, and I hope that they will spread the word to other nurses and grieving parents.

Wednesday, 15 April 2009

Death and Taxes

I recently had to have a little chat with the IRS. They sent me a letter claiming I had miscalculated my tax refund. I double checked everything and disagreed. I suspected that they had not properly accounted for Leah, so I called in and spoke with a very nice agent. I was right. The computer program that they used to check my tax refund had two separate places for entering the child's social security number, but only one of those areas had a place where a contingency could be entered. Thus the bean counter who checked our 1040 got the first part of our taxes correct, but not the second part, and incorrectly assumed that the error was ours and not the computer program's. If we had asked for a social security number for Leah, this would not have happened.

Deciding whether or not to get a social security number for a child that passes away shortly after birth is a big decision. One benefit of having a social security number is that it makes taxes easier. You can e-file, and there is less likely to be confusion, as there was in our case. Also, many parents may find receiving a social security number positively validates their baby's life. However, when you get a social security number for your baby you run the risk of your child's identity being stolen. The deceased are a prime target for identity theft and fraud. Having Leah's identity stolen felt like too big of a risk to us. The thought of dealing with that kind of personal violation in the future outweighed the minor inconvenience of not being eligible to e-file our taxes.

Parents who have a child who survives birth are eligible to claim that child as a dependent on their taxes. The deductions and the child tax credit can be very helpful for off-setting birth and funeral expenses, so it is worth the small steps necessary to do this. You must order a certificate of live birth from your state. In the section for exemptions on the 1040, there is a box under the letter "c" that allows you to list your dependents. You write the baby's name in column one. In column two, the area for the social security number, write "died." In column three where you list the dependent's relationship to you, write "child." Then, check the box in column four. You must attach a birth certificate to your form before you send it in. Just include it with your W-2s and other documents. You may claim your child only for the year of their birth. Click here for a link to the IRS FAQ that briefly explains this.

Remember the stimulus check your received in June of 2008? It was calculated using your 2007 filing status, but is based on your status in 2008. So, if you had a child born in 2008 you need to recalculate your stimulus rebate. You can use the "Recovery Rebate Credit Worksheet" on pages 62 and 63 of the 1040 forms and instructions booklet to do this. This was where the IRS made the mistake in calculating our taxes. Because the computer program for calculating the stimulus is one that they are only planning to use for one year they did not build it very carefully. Thus, when the IRS agent who checks your refund attempts to enter in a child without a social security number as a dependent, it won't work and the computer will say you calculated your refund incorrectly. You will then receive a notice in the mail claiming the same. This notice directs you to call and speak to an agent if you would like an explanation. Do this. Have the agent go over the form with you, and explain that your child does not have a social security number but can be claimed as a dependent because you sent in the birth certificate. They will have go around the computer program to correctly issue the refund. Besides the very very long wait, the discussion I had with the agent was rather painless. It is important to know that even if you have already filed and forgotten to do this, you can file an amended return and receive the credit.

Your child must be born alive for you to take this credit. They only need to live for a moment, but there must be a certificate of live birth for this to apply. It seems very unfair that a family who suffers from a stillbirth (defined as a child born dead after the 20th week of pregnancy) which necessitates all the same expenditures of a short-lived child, does not receive the same tax benefit.

Leah's birth and brief time with us is far more valuable than any tax refund can possible reflect. But it is always nice to pay fewer taxes. Although I have no antagonism with the IRS (hating the IRS is shooting the messenger), it really bothered me to send them one of Leah's birth certificates, even though I had ordered the certificate for that purpose. I am just so proud of her for surviving against the odds, and her birth certificates are the small proofs I have of that struggle. Even though I can order as many as I want, and they will all be exactly the same, and they are not even expensive, I still didn't want to let one go. It was emotionally wrenching to staple one of Leah's certificates to a 1040 and mail it in.

Sunday, 12 April 2009

Why We Chose Burial

Since it is holy week, I thought this might be a good time to share why we chose to bury Leah's remains instead of cremate them. The cost of cremation compared to burial (about $100 compared to $1,800) makes it seem like the obvious choice, especially for two students. Our bodies turn to dust either way, and God will raise us regardless. Most Christians do not think cremation is wrong, and we concur with this opinion. For us the motivation to bury came from the powerful symbolism burial provides.

I had never given much thought to the topic of cremation or burial until two years ago when someone lent us an N.T. Wright video on (I think) the resurrection. In it he explained why Jews, and later early Christians, chose burial; they believed that God cared about the bodies he made, and that bodies mattered to God even after death. After all, these were the same bodies that God promised to raise. God cared about bodies so much that he instructed his people very carefully about what they could put into their bodies, do with their bodies, and do to the bodies of others. This contrasted with pagan beliefs at the time, which asserted that the spirit matter more than the body. Some of these belief systems even viewed the body as holding back or contaminating the spirit, a direct contrast with Jewish and early Christian beliefs that bodies were created in the image of God.

While Jews and Christians entombed the bodies of their dead in expectation of the coming resurrection, pagan cultures often burnt the bodies of their dead. Burial used to be a very vivid marker of what you believed about the body God created and the promises he made about the resurrection. How Jews and Christians treated their dead marked them as different, as expectant. Burying proclaimed a hope in better things to come. What powerful symbolism this simple act holds.

We buried Leah to demonstrate our love for the body God created and the hope we hold for her future. Leah's body was prepared, dressed, and placed in a blanket. I am confident this was done with the utmost care and respect. We buried her in a special place, and marked her grave with a bible verse that explains the hope we cling to: Her body will be raised, her body will be transformed, and it will be made glorious. My precious baby, killed by her broken body, will be restored. She will be raised. She will have new life.

This is the hope of Easter. Jesus died, he was buried, and he rose again. Through his death and resurrection we have the hope of new life, of new bodies, of glory. Thanks be to God.

Wednesday, 8 April 2009

Balancing Sorrows

What better time than holy week to ponder the ugliness of sin and the darkness it brings? Some pretty rough things have been going on with my extended family these last few weeks. I can't share the situation because the problems are not directly mine, but suffice to say there has been a great deal of misery and difficulty afflicting us. The saddest part is that the circumstances we labor under were completely avoidable, but long ingrained patterns of selfishness, anger, and retaliation have finally brought them about. Sin is ugly when it finally comes to the surface.

I went home to California two weeks ago to help with the salvage work. The trip was unexpected and last minute, but I welcomed the opportunity to be useful and helpful, and to have enough busy work to distract me from grief and from the anxiety of waiting for news about the adoption. It was a really rough trip. Usually when I come home I have time to relax and see friends: not so this time. It was hard to be home and not have time to see all the people I love. Also, I was completely exhausted. Staring at hard and unpleasant truths about people you love is physically and emotionally draining. At times I felt very angry, but mostly I was sad, although sometimes I was too tired to feel much of anything.

After church on Sunday my Aunt was talking about the situation, and how we all need to have an attitude of forgiveness. She was right, of course. I desire the freedom from anger that forgiveness brings, but it is so difficult to actually forgive. I am working on it.

Lately it seems like I have to work on many things: forgiveness, trust, relinquishing my desires and plans, letting going of anxiety, learning to live in uncertainty, appreciating what I have instead of focusing on what I lack, and balancing sorrow with my urge to move forward. I have been thinking of the first few verses of Romans 5:

Therefore, since we have been justified through faith, we have peace with God through our Lord Jesus Christ, through whom we have gained access by faith into this grace in which we now stand. And we rejoice in the hope of the glory of God. Not only so, but we also rejoice in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope. And hope does not disappoint us, because God has poured out his love into our hearts by the Holy Spirit, whom he has given us.

Am I rejoicing in my sufferings? Not exactly. I am more resigned to them than anything else. However, we have repeatedly seen God work through our loss, and we do rejoice in that. It has produced perseverance. I have daily proof of this. But what about character? I suspect that is what God is working on right now, despite having been repeatedly informed by me that I am sure I have enough character. The other night Jeff and I were praying and I completely broke down. All I could say in between tears and sobs was "God send us help, send us a victory." We are so tired, we are so frayed. A number of problems have cropped up lately that are completely unrelated to our grief, we find it difficult to balance the burden of those things along our mourning and our waiting. I feel like I am juggling anvils.

Tuesday, 7 April 2009

The Culprit is Found (partially)

Scientists at UCLA (a fine institution) have identified one of the mutations which lead to Short-rib Polydactyly Syndrome. We haven't been able to access the actual article yet, as it will be published in the American Journal of Human Genetics in a few days, but we have read the news piece that UCLA released on the discovery.

The good news is that they will be able to identify SRPS earlier in pregnancy. Currently the process is to ultrasound around week 12 and count fingers and toes and measure the ribcage and limbs. Ten and ten is a good sign, but not definitive. With ten and ten you would schedule more ultrasounds and monitor the baby's growth, to make sure that the chest and limbs were progressing normally. Now that a genetic marker has been found they could offer us genetic testing that would give us a definitive answer by week 12.

The bad news is that the carrier rate appears to be much higher than we were told (1 in 300). However, this is still pretty rare if you think about what that means: Jeff is a carrier, I am a carrier, we each have a carrier parent, a carrier grandparent, and probably one carrier sibling each. That is eight carriers, which means 2,392 people get to not be carriers. If you add in the likelihood that we both also have carrier Aunts, Uncles, and cousins, it is possible (although not likely- you meet a lot of people over the course of your life) that the geneticist was right that we don't know anyone outside our family circles with this gene mutation.

The discovery they made is only one piece of the puzzle. They believe that their are multiple mutations involved in SRPS, so they will continue to search for those. I am thankful that we will have access to answers earlier in pregnancy, but this isn't a cure. It is just early notification.

We found out about this discovery when my mom happened to click on an article in Bruin link. I have to admit I was a little irritated that we found out that way, since I am fairly sure this was the research team we gave DNA samples to. In exchange for my genetic code I had hoped for a little information.

For those of you who are related to us: we don't know yet how much testing will cost. Because it is not common, the test might be expensive. We shall see. I will post information as soon as I find out more.

Wednesday, 1 April 2009

No Children

Today is a hard day. We announced our pregnancy last year via Facebook and phone calls on April 1st. I posted my Facebook status as "Amy is eating breakfast for two" and Jeff changed his to "Jeff is cultivating his dad beard." It was a really fun day, as we had been keeping the secret for quite some time, having known about the pregnancy for two full months before we spread the news. By that time we were really tired of keeping the secret, but I made Jeff hold out because I like April Fool's jokes.

Jeff and I knew that today would not be easy to get through, because it is so clearly tied in our minds to Leah. Remembering the joy of expectation cuts deep. So when we found out that a band we really enjoy, the Mountain Goats, was playing a show in Chicago on April 1st, we opted for a little distraction from our grief and made plans to go. Although I am not feeling much like going anywhere today, I am glad we bought tickets. Knowing that we have them will force me out of the house on a day when I just want to stay home and hide under the covers.

It makes sense to me to go to the concert, because the Mountain Goats ended up providing my coping music during the early stages of grief. Right after our diagnosis in May I went to California for my Mom's graduation from college. While there, I spent a great deal of time driving and listening to a mixed CD my sister Emily had left in the car. One of the Mountain Goats' songs, "No Children," always made me smile. It is a dark, yet funny, song about a really, really miserable marriage that has devolved into extreme bitterness and hatred. It features uplifting lyrics such as "I am drowning, there is no sign of land, you are coming down with me, hand in unlovable hand, and I hope you die, I hope we both die." and "I hope it stays dark forever, I hope the worst isn't over, I hope you blink before I do, and I hope I never get sober." There is something intensely satisfying about singing these words at the top of your lungs. Maybe because it makes you realize that there are so many people with so much more pain than you, or who bear some responsibility for their pain, which I think has to make it so much worse.

I have a somewhat dark sense of humor, and this song completely appealed to that aspect of my personality and allowed me to vent some of my bitterness at a time when I was still very much in a state of shock and unable to access my feelings well. As a side note, I felt a bit bad about some of my dark humor during that time, but later read an article about how healthy dark humor is in a bad situation, so now I am glad that I had the freedom to crack a few inappropriate jokes about my condition. It's a good thing Emily went along with it.

Tonight we will venture into the city for a little distraction and some good music.