Monday, 29 December 2008

Another View

Our dear friend Melody recently wrote a blog post that shared her perspective on meeting Leah. You can read it on her blog, Love Dangerously.

Friday, 26 December 2008

Ornaments in Action

Jeff and I decided to hang our Leah ornament on Christmas eve, when each member of my family receives and hangs their new ornament for the year. Here are some pictures.



We received another beautiful ornament for Leah, made by our sister-in-law, Mary Elise. She made this pink angel for our tree. We love it.

Wednesday, 24 December 2008

Christmas Eve

Tonight we will gather with family and friends to rejoice over the birth of a baby. Born under less than ideal circumstances, this baby’s birth provided hope for humanity and a promise of peace. Although this baby arrived to parents of humble means, and he did so in a lowly place, he had the most spectacular birth announcement possible:

"And there were shepherds living out in the fields nearby, keeping watch over their flocks at night. An angel of the Lord appeared to them, and the glory of the Lord shone around them, and they were terrified. But the angel said to them, 'Do not be afraid. I bring you good news of great joy that will be for all the people. Today in the town of David a Savior has been born to you; he is Christ the Lord. This will be a sign to you: You will find a baby wrapped in cloths and lying in a manger.'

Suddenly a great company of the heavenly host appeared with the angel, praising God and saying,

"Glory to God in the highest,
and on earth peace to men on whom his favor rests.'"
(Luke 2: 8-14).

Tonight, Jeff and I will give glory to God, and beg for his peace, as we celebrate one baby and mourn another. Today marks six months since Leah's birth and death. It is exceptionally difficult to have such a milestone fall on what should be one of the most joyous days of the year.

Tonight my mouth will celebrate Christmas, but my heart will be longing for Easter and the promise that ultimately the grave will have no victory and death will lose its sting.

Saturday, 20 December 2008

Christmas Ornament


At Christmas we celebrate God's gift to humanity of a very special baby, his own son. This year Jeff and I had hoped to enjoy Christmas with our baby, but those dreams did not come to fruition. Although we mourn the loss of this opportunity, we remain grateful that God blessed us with Leah and allowed us a little time with her. This gift of a child did not fit our expectations, or fulfill our dreams, but it was a gift. Thus our response is -as is should be- gratitude.

Jeff and I wanted to find a way to incorporate Leah into our Christmas celebration, and to ensure that she remains there in the coming years. We do not want to forget God's goodness to us, the joy of our pregnancy and of her birth, the darkness of mourning and the hope he has provided us. From where we stand now, if feels like we could never forget, but we know that time will dull our memory. Although we look forward to an alleviation of our pain, we fear that with that we might also forget the many benefits of our brokenness. In addition, we believe that Leah's short life has been an integral tool in shaping who we are as a family. Jeff and I need to tell her story in order to make sense of us.

We decided that we wanted to find an ornament for our tree that we could hang every year as we decorate to open up conversations about Leah and what we have learned through this experience. We also wanted the ornament to represent our loss, and how much we miss her. Finding an ornament has been difficult. We wanted to stay away from glass, or delicate construction, to make sure the ornament would be something future children could touch or hang and not worry about breaking. Most of the thematic ornaments seem inappropriate, and the the colors garish.

Finally, while looking through a gardening catalog, I found the perfect ornament. Well, really, ornaments: half-inch glass "raindrops." They are very tiny, and although breakable, they come in large packs so they are replaceable.

We decided that we will hang a teardrop for each Christmas we spend without Leah. They will remind us of how hard it is to celebrate without someone you love. The beauty and simplicity of the ornament, which resembles a teardrop, reminds us that sorrow is a natural part of life and that God cries with us. The fact that they were originally designed as raindrops points to God's renewal and his provision for our parched souls. I hope to one day watch my future children hang these ornaments and reflect that while God planned my family differently than I imagined, his plan was good.

Wednesday, 17 December 2008

Our Christmas Letter

Dear Family and Friends, December 2008

Last year I promised myself that we would write a Christmas letter this year. As the time drew near, I found myself increasingly reluctant to sit down and actually commit the events of this last year to paper. 2008 brought Jeff and me the greatest joy and the deepest sorrow.

In February, to our delight, we found out that our family was expanding. In May we received very difficult news during a routine ultrasound: our baby would not survive after birth. After weeks of ultrasounds and confusing and ever-changing diagnoses, we learned that a further medical complication developed which necessitated an early delivery. On June 24th our tiny baby girl arrived. Leah Veronica Klug was 9 ½ inches long, and weighed 1 pound, 6 ounces. She had her mother’s cheeks and her daddy’s ears. She spent forty-five amazing minutes with us. We cherish the time we had with her, both in the womb and in our arms and we continue to thank God for this blessing. We are grateful for the incredible support we have received from family and friends throughout this time. Pictures of Leah are posted on our blog at www.lovinglittleleah.blogspot.com. We are so proud of our girl.

I had been on track to complete my dissertation over the summer, but my work fell by the wayside in the midst of everything. I have now turned in all five chapters of my dissertation and am working on revising them to be turned in next summer. Jeff has continued on track towards his Ph.D., and should be graduating in June of 2009. Jeff currently works at Argonne National Lab and hopes to continue in a post-doctoral position there after his graduation. Although I am not looking forward to a few more years of snow and ice, we have made wonderful friends here in Illinois who help make the winters more bearable.

In September we decided to begin working on adopting a baby. We plan on adopting from Uganda, and if all goes well we hope that we will be matched with a child and be able to pick him or her up within the next year. We have completed our home study and have been approved as adoptive parents by the state of Illinois. We now await approval from the United States in the form of an orphan’s visa.

We continue our involvement at our church, First Presbyterian Evanston. We both serve in First Focus, our church's young adult ministry. Amy volunteers at the church library, and Jeff plays electric guitar in the worship band. Between our activities and work we feel rather busy these days. We are looking forward to a break and to spending the holidays in California with our families.

We hope that you find peace this Christmas season.

Love,

Amy and Jeff Klug

Saturday, 13 December 2008

St. Mary’s Services

When Jeff and I began researching adoption, I used information from blogs written by adoptive families to help choose our agencies. We ended up with two agencies: one in-state to complete our home study, and one to handle the international side of our adoption. Now that our home study is finished, I thought I should write a quick post about our home study agency to put information out there for other prospective adoptive parents.

We ended up choosing St. Mary's Services, in Arlington Heights, Illinois for our home study. We decided to apply with them because they responded quickly to my inquiry emails, seemed interested in helping us, and were flexible on a few matters of payment. Adoption agencies bill you for post-placement services upfront, and many will not refund your money even if you don't use those services. St. Mary's agreed to refund our money if we didn't use their post-placement services due to a move out of state. We intend to stay in Illinois for at least another year and half, during which time our adoption will hopefully be completed, but since anything can happen in international adoption I wanted to make sure that if things didn't go we wouldn't be charged for services we didn't use. I understand why agencies charge upfront for post-placement visits, but it really bothers me that many will not give you a refund even if your adoption never happens.

We mailed our application in the middle of September, and were instructed to get fingerprinted right away. Our social worker, Michaelyn Sloan, contacted us within a week to set up our first appointment. We met with her on September 28 for our first couples interview. Michaelyn made our home study process easy. She responded to all of my emails and phone calls within a very reasonable time frame, she scheduled our interviews quickly, and she always gave us adequate notice when she needed to change our appointments when emergencies came up. She demonstrated an extensive knowledge of DCFS requirements and international adoption. She directed us to wonderful educational resources, and provided us with material about grief and adoption. We felt that she really made an effort to understand our situation and to connect with us by sharing pieces of her own adoption journey.

We received our foster license from the state of Illinois on November 18, only two months after we first mailed our application. We were so thankful that Michaelyn respected our level of motivation and worked so hard with us to get all the paperwork turned in as quickly as possible. Jeff and I whole-heartedly recommend using Michaelyn Sloan of St. Mary's services for the completion of an adoption home study.

Tuesday, 9 December 2008

Dossier Update

We are currently working on putting together our dossier, a package of documents that we will send to Uganda. It includes our home study, medical records, financial statements, criminal clearances, birth certificates, marriage license, and a letter to the Ugandan department that oversees adoption. We have finished almost everything, and are awaiting the final piece - our orphan's visa approval. Once that arrives we will have everything notarized here in Evanston, then I will go into Chicago to have the notarization verified by the state. Then we will send the dossier to our agency in Alabama, and they will verify that everything is in order before they send it for more verifications.

I had hoped that our visa might come before I went to California for Christmas. It was never really likely that it would happen, because visas usually take about 3-6 weeks from fingerprinting, but now we know that it will not happen because of a paperwork delay at DCFS. DCFS approved us as foster parents in mid-November, but did not approve us for international adoption because they needed some additional information from our agency. Our social worker did not receive the message because she was out of the country, so none of this came to our attention until last week. I was extremely concerned that they might not give us our international approval, which led to an anxiety filled day, but we now know that DCFS has agreed to approve our application pending receipt of some documents that are in the mail. As a result, even if our fingerprints clear the background check quickly, immigration does not have the information they need from DCFS to approve our visa application.

Although it was very unlikely that we would have received our visa before Christmas anyway, we felt really disappointed when we found out that it was impossible. Now I am concerned that we might not have it by the time we get back! Obviously delays are common in adoption, and things are still going very quickly, but I had hoped that the process in the US would go totally smoothly. This is really our second delay, as we turned in our visa application very late in the home study due to some mail miscommunications with our international agency. None of the delays have been anyone's "fault" and I am glad that the small problems we have encountered have been easily fixed, and that both of our social workers have worked so hard to keep our adoption moving. In the grand scheme of our adoption these issues will probably only add a few weeks to our total time. I know that is nothing, but I am impatient!

We continue to pray that this will happen in God's perfect time, but that his time will be soon, and if it isn't, that he will give us patience and peace.

Saturday, 6 December 2008

Holding on to Hope

A few days after Leah's birth, a friend from church handed me a copy of Holding on to Hope: A Pathway through Suffering to the Heart of God. It is an amazing book, and has been a tremendous help to both Jeff and me as we proceed on this journey.

The book follows Job's story of loss and grief, and the story of the author, Nancy Guthrie. Nancy and her husband lost a little girl, Hope, to a metabolic disorder called Zellweger Syndrome. Her daughter was diagnosed shortly after birth and died seven months later. Upon learning that the disorder was recessive and had a 25% recurrence rate, She and her husband decided not to have any more children. Then they found out that despite their efforts they were pregnant, and that this child also had Zellweger Syndrome. He lived for six months.

Guthrie writes movingly about her experiences relating to the loss of her two children. Her honesty in addressing her sadness, her struggles, and her submission to God inspired me and helped me see hope for our situation.

Guthrie addresses her book to anyone dealing with loss, and her focus on Job, who lost not only his children, but also everything he owned and his physical health, further broadens the books’ appeal.

I am including some quotes that helped me below.

"Our culture wants to put the Band-Aid of heaven on the hurt of losing someone we love. Sometimes it seems like the people around us think that because we know the one we love is in heaven, we shouldn't be sad. But they don't understand how far away heaven feels, and how long the future seems as we see before us the years we have to spend on this earth before we see the one we love again."

"...We worship because God is worthy, not necessarily because we 'feel' like it. In the midst of a crisis, if we only do what we feel like doing, we could remain stuck in a cycle of self-pity. But when we worship, we get our eyes off of ourselves and our sorrow or problems. We focus them on God, and this puts our difficulties into proper perspective."

"But as we voiced our deepest feelings and fears out loud, we realized that we had to let go of those things too. We needed to trust God with everything we had, to open ourselves and say, God, it is all yours to do with as you will!
Some days I wonder if the letting go is ever going to stop."

"Trusting God when the miracle does not come, when the urgent prayer gets no answer, when there is only darkness- this is the kind of faith God values perhaps most of all. This is the kind of faith that can be developed and displayed only in the midst of difficult circumstances. This is the kind of faith that cannot be shaken because it is the result of having been shaken."

"I have come to the place where I believe a yearning for heaven is one of the purposes and one of the privileges of suffering and of losing someone you love. I never had that yearning before, but I do now. You see, a piece of me is there."

"In his response, God did not explain suffering or how to avoid suffering. Suffering is a mystery...and Job came to respect the mystery. Job came to understand that because he knew who God is, he can accept what God gives- even when he didn’t understand it."

Wednesday, 3 December 2008

The Bunny Suit

After our confirmation ultrasound, the timing of our baby's arrival remained up in the air, and the ever present threat of a cord accident and stillbirth hung over us. Since we knew that each appointment with our doctor could yield bad news, we decided to gather the things we needed for delivery. We contacted Now I Lay Me Down to Sleep, I made blankets, and we ordered an outfit for our baby.

Finding an outfit for a very premature baby is a difficult thing to do. You are limited to white, frilly burial gowns and NICU gowns. The selection of outfits for people in our situation is rather dismal. I felt it was inappropriate to dress my baby in a burial gown while the baby lived. The NICU gowns offered a decent array of patterns and colors, but they do not look like "regular" baby clothes. Given our options, we decided on a NICU gown.

Thankfully, the internet gave us access to a number of sites with a variety of gowns and quick service. We decided to purchase only one outfit to bring to the hospital, so we chose a gender-neutral gown featuring bunnies in yellow, blue, and green on a white background. In the pattern the bunnies jump on the bed, pillow fight, take baths, and nap. Chuckleberries made the gown we chose.

We ordered a micro-preemie size one gown, which fits a baby up to three pounds. Choosing a size was difficult because we didn't know how long we would be waiting until the baby was born. We knew our baby would have shortened limbs due to dwarfism, but also we had some concern about the distortion caused to the baby's torso by hydrops, and we wanted to make sure that whatever outfit we chose fit over his or her tummy. Since Leah ended up coming so early, her outfit more than covered her. Even though we ordered a short-sleeved gown in the smallest size possible, when Jeff dressed Leah he still had to roll up the sleeves! He also used pins to make the gown small enough to fit her.

Saturday, 29 November 2008

Good News on Thanksgiving

We really missed Leah on Thursday. We distinctly felt the hole in our family as we celebrated together and thanked God for his many blessings. A good friend invited us over for dinner with his family, and we enjoyed a delicious meal and had a wonderful time talking and playing games.

We have been dog-sitting the last few days, and it has been a huge blessing to be out of our apartment for the holiday. Since we hadn't been home for a few days, we stopped by on our way to dinner and checked the mail. Our mailbox contained not only the confirmation that USCIS received our orphan's visa application, but also our fingerprint dates. The dates are both soon and convenient. I feel very relieved. Thank you all for your prayers. I am hopeful that we could now get our visa early in January. After such a long and sad day it was really nice to have a glimmer of hope.

Thursday, 27 November 2008

Thanksgiving


Today we are reflecting back on how good God has been to us this year. He gave us the gift of a child. She was beautiful. He gave us time with her, time to hug her and kiss her and tell her how much we loved her. He assigned to us the most caring nurses and competent doctors. He gave us family that surrounded us in our time of grieving. He gave us friends that cared for us and brought us many delicious meals. He brought the wonderful people at NILMDTS into out lives, and now we have amazing photographs of our Leah. He has given us people to listen and love us as we mourn. He has surrounded us with a community that prays for us and encourages us. He has given us hope for the future of our family. Most important of all, He has given us His own son and through Him assurance that we will be with our daughter again. We have a lot to be thankful for.

Monday, 24 November 2008

Certificate of Live Birth

We recently ordered and received Leah’s birth certificate. I am so thankful that she survived labor and that the state of Illinois acknowledges her life. It means so much to have this slip of paper. As parents to a baby who died so soon after birth, we have had so few chances for normal parent experiences. Filling out a form just like all the other parents and receiving in return a validation of Leah’s life makes us proud. Knowing that her tenacity has been officially recorded, that her presence on this earth has legal standing, provides us with comfort.

My heart breaks for all of the parents of stillborn babies who never have the chance to receive an official acknowledgment of their baby’s existence. All babies who take a breath have a right to a birth certificate, but those who pass away in their mother’s womb or during labor only receive a legal recognition in 25 states. Parents of stillborn babies are often only entitled to a death certificate. If you ever have a chance to sign a petition or to support a law concerning "Certificates of Birth resulting in Stillbirth" please do. This law would give parents the option of requesting a type of birth certificate for their stillborn baby. Since stillbirth is legally defined as the death of a baby later than 20 week gestation, most of the women who experience this must go through labor and give birth to their baby. Their babies are not born alive, but they give birth. Every mother and father deserves to have their baby positively recognized by their state.

Saturday, 22 November 2008

Our Home Study is Complete!

This week we got our foster license in the mail, which means that our home study has been received by the state. It will take a while, but hopefully not more than a month, for them to review it and send it on to USCIS (United States Citizenship and Immigration Services). We sent an application for an orphan visa (I-600a) to USCIS. Our home study will meet up with our application. At some point (we are not sure if this happens before or after USCIS gets our home study approval), we will get a letter telling us to go for fingerprinting. For those of you thinking, didn't you just get your fingerprint clearance back? The answer is yes, we did. But that was the FBI check. This fingerprinting will be for the Department of Homeland Security. And yes, this inability of branches of our government to communicate is costing us $160.00, another few hours of our day for the trip to the fingerprinting office, and more waiting. Visa approval can take up to three months. Since we sent our application in mid-November we should have it by mid-February. I have been told that USCIS in Chicago moves more quickly than the estimates and that we could have our visa approval by the end of January.

We are waiting for the list of dossier documents from our international agency. Apparently quite of few of them are compiled in the course of the home study, so we already have a third of the list finished. We would like to have everything together before we get our visa approval.

After we send our dossier the timing of our adoption will depend on how things go in Uganda, and how quickly our agency's Ugandan representative can find a baby available for adoption. It may be a little harder because we are asking him to find one as young as possible (the youngest allowed is six month) so that I can breast feed. That means he has to find a baby with really good paperwork proving Ugandan citizenship and abandonment.

In terms of timing, our home study was finished a month earlier than we expected, but because of some mail mix-ups and other delays our visa request was mailed later than we would have liked, so the visa and dossier may take longer than we had hoped. There is still a good chance, if everything goes smoothly, of us traveling early next summer.

Right now, on our side of things, we are praying for fast approval from the state of Illinois, quick processing from USCIS, a fingerprint appointment that we can both easily make, and no paperwork mix-ups or other unnecessary delays. We are also praying for our baby, his or her caregivers, and his or her birth parents. We would love it if you would join us in praying for any or all of these things.

Thursday, 20 November 2008

No More Scabs

When I was in seventh grade, I took my first and last ride on a dirt bike. The ride lasted all of thirty seconds and ended with me face-down in the dirt. After my mind caught up with my body, I got up and brushed myself off, completely stunned and absolutely numb. When I looked down to clean off my legs I noticed huge raw patches on my knees.

The wounds on my knees bled and bled, then they itched and itched as scabs formed around the rim and slowly worked inwards, over the course of the next few days, to cover the oozing centers. The scabs took quite some time to form, and because of their location they cracked, and bled a little more, and reformed, and chipped off, and it all resulted in a very unpleasant mess. However, because of those ugly and uncomfortable scabs protecting my skin my knees had a chance to heal.

My heart felt like my knees did then. For so long we bled grief profusely, and now, almost five months since Leah’s death, I finally felt like there was a good solid crust forming on the outer circle of my wound. Not covering it, but promising to. I still hurt, I was far from healed, but it felt like I had that little bit of protection that I needed to begin.

The events of last week have re-exposed our hurt. The little protection and distance we built up over almost five months of grieving have been brutally ripped away. We feel raw again.

I think it is far more about the rejection and much less about the loss of the baby. Not that we wouldn’t have loved to have him, but until Tuesday morning we had settled into waiting for our baby from Uganda. We had a measure of contentment with things as they stood. Having the possibility of having a baby now dangled in front of us and then taken away hurt, but what hurt more is that someone else examined our lives and decided we wouldn’t be the best parents for her child.

As we move into the holiday season, one that we planned to spend with our Leah, things were already getting tough, but we felt like we had the resources to deal with hard situations. Now we feel drained and vulnerable.

Monday, 17 November 2008

Dwarfism Awareness Week


It may not be exactly official, but Tonya, who keeps up one of the most informative blogs about dwarfism that I have come across, What is Normal? has declared this week "Dwarfism Awareness Week." She has asked other people to post about why they chose to continue their pregnancy after they received a diagnosis of dwarfism.

We continued on with the pregnancy because we loved our baby and wanted to spend as much time with her as possible, and we hoped for a few minutes with her after birth. As I have shared before, those minutes we had with Leah were worth the hard times. We had joy. We held it in our hands when we held our beautiful baby, our precious Leah whom God created and gave to us - if only for a little while. I believe we mourn more deeply because of those moments, since we can more fully comprehend what could have been if our beloved daughter did not have SRPS. That said, the memory of Leah and the time we had with her also help mitigate our pain. We had joy.

Our Leah had the cutest cheeks, precious pudgy legs and arms, and perfect little ears. We wish she would have had a non-lethal dwarfism so that she would still be with us.

Wednesday, 12 November 2008

Why?

I am so frustrated with God right now. I cannot understand why he put us through the events of the last two days. On Monday night we were excited about the way things were going with our adoption plans. We had specifically said no to a “dual track” pursuit of both domestic and international adoption. We were all about Uganda. We signed all the contracts our agency had sent us, prepared our orphan visa papers, and were ready to mail everything the next day. Then I realized the next day was Veterans Day, so mailing was not an option.

On Tuesday morning I got a call from our domestic agency asking if they could show our information to a birth mother that might be a good match. We said yes, of course, and I marveled that perhaps God had timed things very well. On Monday I had prayed and asked him to intervene if he planned for us to take a route different than the one we were on. When I got the phone call the next morning I couldn’t help but wonder if this was the answer to my prayer. I rushed around preparing our “profile” material, and managed to get it all turned in two minutes before the office closed. Everything seemed to be falling into place.

We have struggled since yesterday morning not to get too invested, but it is nearly impossible not to, especially because we feel called as Christians to pray over the process, and the mother, and baby, and everything that is going on. When you are praying for someone like that you can’t hold back your heart.

Today was miserable. Neither of us slept well last night, and both of us felt so nervous all day. I have felt like I was going to throw-up since I woke up this morning. At 5:30 this evening we received a call saying that the birth mother chose another family. Our feedback was that she liked us, but wanted a couple that was more “settled in their careers” and “older.” This was not a surprise to us. When we first started looking into adoption we were told that we were poor candidates for a domestic case because most adoptive parents are older and far wealthier than we are. One of the reasons, and there were many, that we chose international adoption in the first place was to avoid this anxiety and this rejection.

I simply cannot understand why we were pulled back in, and with this timing. Had our agency called on Wednesday, after I mailed that contract and check, I would have said no to participating in this process. We were perfectly happy with what lay ahead of us with an international adoption. We were content to wait (albeit somewhat impatiently) and excited about something. We don’t get very much of that.

I don’t understand why we were taunted with a baby this week. It just doesn’t make sense.

She didn't choose us.

Waiting...

I am officially a wreck. I barely slept last night, and I feel like I am going to throw-up. This feeling is one of the many reasons we chose not to go the domestic route. But how could I say no when they called?

I know that this is in God’s hands, but given the past six months, that doesn’t comfort me in regards to the amount of pain I might experience. If she doesn’t choose us, or changes her mind, I will know that this baby was not the one that God had in mind for our family. Then I will wonder why on earth God decided to put us through this. We have fragile hearts. We have lost so much in the last few months, and we do not feel ready or willing to lose again.

In the C.S. Lewis book that I quoted from yesterday, A Grief Observed, Lewis writes a metaphor depicting God as a surgeon. He describes how God, as a good surgeon, must continue his cutting and finish the operation no matter how badly it hurts the patient or how loudly the patient cries for mercy. If he stopped the surgery prior to its completion, the patient would be far worse off in the long run. The patient simply doesn’t have the perspective to realize this, so the surgeon cannot listen to his pleas.

I have no perspective. I don’t know if this opportunity is God’s answer to our pleas for a child, or if our “surgery” simply isn’t finished. That scares me. I don’t want to bleed anymore.

Tuesday, 11 November 2008

WE NEED PRAYER!

My adoption agency just called. Tomorrow a birthmother will look at a letter from us and pictures of us to decide if we should be the parents of her baby. This is completely unexpected, so I am now making an album and writing a letter. Please pray for the mother and father, the baby, and us. We don't know if this is the baby God has for us or not, but it would be amazing if it was.

A Grief Observed


I picked this book up at my church library on Sunday, and read the whole thing Sunday night after small group. That is not nearly as impressive as it sounds, since this book is only 60 pages long. In those short pages C.S. Lewis documents his reaction to the death of his wife. It does not comprise a coherent theology relating to grief, but rather the ramblings of a man whose heart remains in shambles. I loved it. Although I did not relate to all of his struggles, I found that his musings on the process of grief reflected so well many of my feelings. As he recounts the stages he passed through, I found myself nodding in agreement. I know those aches. Below I am including a few of Lewis' thoughts that resonated with the pain in my heart.

"Part of misery is, so to speak, the misery's shadow or reflection: the fact that you don't merely suffer but have to keep on thinking about the fact that you suffer. I not only live each endless day in grief, but live each day thinking about living each day in grief."

"If a mother is mourning not for what she has lost but for what her dead child has lost, it is a comfort to believe that the child has not lost the end for which it was created. And it is a comfort to believe that she herself, in losing her chief or only natural happiness, has not lost a greater thing, that she may still hope to 'glorify God and enjoy him forever'. A comfort to the God-aimed, eternal spirit within her. But not to her motherhood. The specifically maternal happiness must be written off. Never, in any place or time, will she have her son on her knees, or bath him, or tell him a story, or plan for his future, or see her grandchild."

"What do people mean when they say 'I am not afraid of God because I know He is good?' Have they never even been to a dentist?"

"Tonight all the hells of young grief have opened again; the mad words, the bitter resentment, the fluttering in the stomach, the nightmare unreality, the wallow-ed in tears. For in grief nothing 'stays put'. One keeps on emerging from a phase, but it always recurs. Round and round. Everything repeats. Am I going in circles, or dare I hope I am on a spiral?

But if a spiral, am I going up or down it?

How often- will it be for always?-how often will the vast emptiness astonish me like a complete novelty and make me say, 'I never realized my loss till this moment'? The same leg is cut off time after time. The first plunge of the knife into the flesh is felt again and again."

Saturday, 8 November 2008

Change

One common line of advice you hear with any grief situation is not to make any major decisions for at least one year. Don't change jobs, sell you house, or make any major financial changes. This advice is good for two reasons: one, grieving people are ill equipped to handle the stress of these major decisions, and two, grieving people are more likely to make a hasty decision they will regret later.

Unfortunately for us, we don't have the luxury of not changing jobs or not moving.

Originally I planned to finish my dissertation over the summer, have a baby, and job search in January. Since the first two didn't happen, the last one won't either. I simply didn't have the focus or the energy to complete my dissertation after we learned of Leah's diagnosis. Although things have vastly improved, the stress of meeting the deadlines for a January job search proved too much, and I had to give it up. My wonderful advisor has worked things out so I can turn in my dissertation when I feel up to it. Actually, I have turned in all of the chapters, I just need to do some revisions and work on the introduction and conclusion. Some days I am able to work with focus, others I'm not. I have learned to accept that...although "bad days" become harder to deal with as I continue to have more "good days," because I am often unprepared for them. I am thankful that I am in a position to grieve slowly, and to focus on my health instead of my work.

Jeff, as the bringer-home of most of our bacon, has not had that luxury. He will also finish his dissertation this year, and he is looking for a job. We are hoping to remain in the spirit of the "no big changes for a year" advice by finding a post-doc position at the place where he currently works. His present boss has a possible post opening up, if the money comes through. We continue to hope and pray that this will happen. Even though we long to return to California, we can’t overlook the benefits for Jeff from staying in a position similar to his present work and avoiding the stress of an extensive job search.

That brings us to our final decision, pursuing an adoption. Actually, we made that decision long ago, before we knew Leah wouldn't live, and that having biological children would carry such a high risk. We have always assumed we would adopt after we finished having biological children. Now we know that God has a different timeline and a different plan for us than the one we made. Although we continue to grieve the loss of our daughter, and of our incorrect belief that we had control over planning our family, we find joy which is greater than sorrow as we embark on this new adventure.

Wednesday, 5 November 2008

John 9

Last week John 9 came up as one of the readings in my daily devotion book. The passage opens with a question, "Rabbi, who sinned, this man or his parents, that he was born blind?"

Jesus answered "Neither this man nor his parents sinned; he was born blind so that God’s works might be revealed in him..."

The day after we first received Leah's diagnosis I went home to see my Mom graduate from college. That weekend I planned an open house in celebration of Mom's achievement. Organizing the party helped to distract me and gave me something positive to focus my attention on. Attending the party was very difficult, because not everyone had heard the sad news. One of my sisters stayed by my side to intervene when it became obvious that someone did not know about the change in our situation. It worked well, but there are some things that you just can’t prepare for.

About half-way through the party one of the guests said, "I don’t know very much about these things, but I'm sure that this just happened because you have so much stress from being in school and writing a dissertation."

She was right about one thing; she doesn't know very much about "these things."

Given the advances that have been made in scientific research, I thought that blaming parents for genetic problems was passé. Apparently I was wrong.

I am happy to say that this solitary comment is the only one I have had to deal with in regards to any blame that Jeff and I have in our daughter's death. We have messed up genes, and we passed them on. I don't blame myself for this any more than I blame the parent, the grandparent, the great-grandparent, and so on, who passed this on to me. None of us has any control over our genetic code. For all the faults of my DNA, I am who I am because of it, and the same goes for Jeff.

We don't know why God allowed our daughter to inherit the bad genes, all we can do is pray that God's works might be revealed through Leah's life and ours.

If only Jesus could follow us around to answer hard questions for us.

I have been thinking about the man in John 9, and his parents. They are all featured in the passage. The man is healed of his blindness, and the parents are called upon to confirm that he is their son and questioned about is healing. I wonder what they all thought when they heard Jesus' answer. Were they happy to be absolved of responsibility? Were they excited to have their lives be such an important part of God's plan? Or was it all lost in the sheer joy of knowing their son could see?

Did they question the suffering they had endured, the years of people whispering about them behind their backs, the subtle disapproval of strangers who blamed them, or the burden of guilt they had lived under assuming they had done something wrong?

Saturday, 1 November 2008

Adoption Update

Last week Jeff and I found out that we have been officially accepted to our international adoption program.

We have been working on our home-study with a local agency since the end of September, and it seems to be going really well. We have filled out a great deal of paperwork, begun our education, and done about half of our interviews. The big hurdles left to clear are our final couples interview, our home inspection, a day-long adoption education seminar, and getting our clearance from the FBI. We anticipate finishing all of the things we are responsible for by the end of November, but we may not be able to finish our home-study until December simply because the background checks take so long.

When we finish most of our home-study we will begin working on our dossier, which is all of the paperwork required by Uganda. We will also be applying to immigration for pre-approval for an orphan's visa. The visa is another thing that will take quite some time, and we will have no control over how long it takes. Once our dossier is complete it will be certified and sent to Uganda and we will wait for a referral.

We are requesting a healthy baby younger than 12 months. Since we are not requesting a boy or a girl we will probably get a boy, because apparently most people ask for girls.

This is going to be a long process. It might not take as long as many countries, and there is a chance we could be traveling by next summer, but with international adoptions things often take much longer than expected. We need prayers for patience, and the ability to trust that God's timing will be perfect. It is much easier to say it then to live it.

Wednesday, 29 October 2008

Stopping Breast Milk Production, or, Lactation Frustration

I wrote this post because when my breast milk came in we were desperate to find something to stop it, and there was so little information available. My doctors had very little advice, and they no longer give shots or pills to dry up your milk production.

Below are my reviews of the different things I tried to decrease my milk production. Something must have worked because my physical discomfort was minor.

Take a pain reliever: You will get some when you leave the hospital.
Verdict: Do it. This is easy and effective.

Binding: In the hospital I was told binding my breasts might help. They gave me a garment to assist me in this process, a pink and blue tube top, but it was so large it barely stayed up and did not provide any pressure. One size does not fit all. At home I used a tight ice pack, and when I wasn’t icing I wore a tight bra with either a sports bra or tank top.
Verdict: Easy to do and almost compulsory when you are icing anyway.

Sage tea: totally gross, like drinking your Thanksgiving stuffing. However, it is easy to access, as sage is a rather common spice, and all you need is a tea ball or strainer to make it. Just fill your tea ball about half way, or put a few spoonfuls in a pot, cover it with boiling water and let it steep a few minutes until it is nice and green.
Verdict: It will taste terrible, but maybe it helps and it didn’t have any unpleasant side effects that I noticed. I would do it again.

Cabbage leaves: the instructions were to freeze cabbage leaves and then apply them directly to your breasts. Allegedly something in the cabbage assists in stopping the milk production. I was also advised to eat cabbage, but I just couldn’t bring myself to do it. The frozen leaves felt nice for maybe one minute, which was as long as they stayed frozen and cool. After that they got warm and smelly. Soon, I smelled like cooked cabbage. Then I could not escape that awful smell. When I took off the leaves and threw them away, the whole room that the trash can was in smelled like cabbage. I swear that I can still smell it on the sports bra I was wearing then, even though I have washed it many times since.
Verdict: This is a bad remedy if you are going to be hanging out with anyone else, or if you dislike the smell of cooked cabbage. I have no idea if it helped and would not do it again because the possible benefits do not outweigh the discomfort.

Ice: My mom and mother-in-law went to the drugstore to find some ice-packs for me. They ended up picking out two reusable packs meant for lower back pain that came with a cloth holder and strap. They worked pretty well because I could secure them in place with the strap, and if I did it tightly enough then it had the double effect of icing and binding all in one. The strap was not terribly comfortable, but I was able to sleep in it, which allowed me stay iced almost constantly. I found that the pack generally lasted long enough to refreeze the second pack. Another good alternative to the holder and strap was stuffing the icepack in a tank-top with a shelf bra to hold it in place.
The hospital recommended using bags of frozen peas because they conform well to the shape of your breast, but I did not explore this option, and am glad I didn’t because the only thing worse than smelling like cooked cabbage would be smelling like cooked cabbage and peas.
The downside of the ice is that you look funny having a big icepack sticking off your chest, and you have to do this for a quite a few days, but at least you don’t smell. You should ice as much as possible, but if you have to go out, as I did for Leah’s funeral, you can take a short break.
Verdict: Fairly easy and only marginally uncomfortable, also, I think this is what helped the most.

Avoiding Hot Water: This is only hard to do when you are taking a shower. I stood with my back to the water as much as possible. Obviously you have to get wet to get clean, but just try and avoid letting the water hit you square in the chest.
Verdict: This is really important. The one time that I leaked a lot was just after a shower.

Having breast milk come in is very traumatizing, as it serves as a constant, painful, physical reminder of your loss. It feels like your body is rubbing salt in your wound. I was not prepared for how difficult this aspect of pregnancy loss would be for me, because I don't think it is something you can understand before you experience it. I thought that after the pain of giving birth, having my breast milk come in would be comparatively easy. However even though it was technically physically less painful, I found it to be much more emotionally distressing.

Saturday, 25 October 2008

Connection

At the end of September I posted on the parents' message board of the Luca John Foundation. I felt a little skeptical about how much good it could do because the most recent post that I could find had been put up months before, and only a handful of people had used the board. But beggars can’t be choosers, so I went ahead and left some information about myself and the blog. A little over a week later I got an email from one of the people who started the foundation, a SRPS Dad. Since we made contact he has gone to great lengths to put us in contact with other families with SRPS. We have already received a few emails, and we are expecting a few more.

At the same time that I had initially tried to touch base with others via Luca John, I also sent an email to the SRPS Family Network. Jeff found the network information in Google cache. The website for the network was (at the time) no longer up, and hadn’t been updated in quite a while, but I was able to find an email address and send a request for information. This week I got an email from the organizer, a SRPS Mom, including an attachment with stories from other SRPS families. She explained that the network is a very loose association. They collect stories and give out information when a new family is diagnosed.

It was really nice to know that we are not alone. I have been able to make contact with some pretty amazing women who have lost children to various lethal skeletal dysplasias through this blog, and I love reading their blogs to see how they manage to cope with losing their babies, but none of them have to deal with the genetic problem that we contend against. I just wanted to find someone who went through all of it: the diagnosis, the loss, and eventually the news that it could happen again.

Tuesday, 21 October 2008

Framed

We received our pictures from Now I Lay Me Down to Sleep right before we left for a recent trip home to California. We picked them up from Deanna's place and rushed right over to Costco to print them out. We put them all in an appropriately girly album, which we packed carefully in our carry-on, and brought them home to show off to anyone who was willing to look.

The pictures have been so important to us. We look at them all the time. We have loved having our photos in the album, but we decided we needed some on the walls too. Although we have numerous "favorite" pictures, we decided on two to hang on the walls; one for our bedroom and one for our living room.

This one hangs in our bedroom. We love this picture because this is the moment when I first saw Leah. Our photographers captured it perfectly. We love how they captured the three of us just as we were. Jeff carefully cradles Leah in his hands, while I, stunned by the miracle of meeting my daughter, gingerly reach out to hold her tiny hand. We know Leah is a little slimy in this one, as all newborns are, but she is so beautiful.

In our living room we have hung this one. This is our favorite "clean" picture. It captures the absolute joy of the moments we had with our darling girl.

Jeff’s mom framed for us the first gift we received for Leah, a little onesie with a rock & roll squirrel motif.

The caption reads:

Leah Veronica Klug
June 24, 2008 - 1lb. 6oz, 9 ½ inches
45 Minutes of Pure Rock & Roll

Friday, 17 October 2008

Joy and Sorrow

After I gave birth, my body readied itself to care for my baby. But I had no baby to feed or hold, and the physical pain accentuated the loss and added to my heavy burden of grief. My arms felt so light as they cried out to bear the weight of my little one. My breasts filled with milk and ached for having no child to feed. My body demanded an explanation for this subversion of the natural order. It went through the rigors of giving birth, and it wanted its reward. I had nothing to satisfy it with. The best thing I had to hold was the little bear we received from the funeral home. It was just the right size. I slept with it tucked under my arm for days, as I begged God for my milk production to subside, and for my body to stop harassing me to produce a child for it to tend to.

Grief always has a physical component. It slows you down, makes you tired, and takes away your ability to focus. I am thankful for the way God designed us to bear grief. I needed the effects of shock in order to recover physically. The exhaustion and numbness allowed me to sleep, which gave my body a chance to heal. But now that my body is strong, the pain of loss has increased. The dam that my body erected to defend itself from a flood of sorrow has sprung leaks.

Now Jeff and I have to deal with reality, and that reality doesn't include our daughter, and may never include biological children. We have to face that we may go through this again. These issues compound our journey of grief, as really we grieve more than one thing. We mourn the loss of Leah, the knowledge that our bodies create life that can not live, that our oneness does not produce life the way God intended it to, that future pregnancies will never bring the same unadulterated joy that this first one did. Now they will come with a large dose of apprehension.

We believe that God has directed our steps to a different path for creating our family. Making progress down the road to adoption has given us hope for our future, but at the same time it reinforces our losses as it tangibly confirms that our plans have changed.

Last night I slept with my Leah bear again. I hadn't slept with it since right after my milk production subsided, but as I lay in my bed I was overcome with an urge to hold Leah, and that bear is all I have.

Last night we had our first meeting with our international agency, and it looks like we will be officially accepted into the program (we get the final approval next week). I don’t think it is a coincidence that this great joy also triggered feelings of deep sorrow.

Wednesday, 15 October 2008

Not Many Answers

Jeff and I finally got the call from Cedars Sinai confirming that they wanted our DNA for research purposes. While I was talking with our contact there I had a few questions about SRPS. Since Cedars has the most active research on SRPS I thought maybe I could get some straight answers.

Most of what we know about our condition has come from reading case studies on the internet that have been published in medical journals. Although these papers contain some background information and theory, they tend to be very specific to the type of SRPS they are diagnosing and the conditions of the specific baby they examined. They also frequently contradict each other, since groups come up with different theories about SRPS.

I would like to know the incidence rate of the SRPS gene, if the four types of SRPS are actual subtypes or just different expressions within a spectrum, and how many cases of SRPS they receive every year/or have received total. The different case studies provide different answers to all of these questions, so it has been hard to decide what to believe.

I am very curious to know about other families with this condition because I feel very alone.

Our contact at Cedars was not able to give me many answers, although she did direct me to the Luca John Foundation, which was founded by an SRPS family and exists to support research of skeletal dysplasias. Additionally, she did tell me that SRPS might not be one syndrome, but rather a few separate syndromes that look really similar (and hence have been classified together) but that may be caused by completely different genetic mutations, and that these mutations probably don’t interact together. If this is true, and the different subtypes of SRPS are different, then the incidence rate for SRPS (which would have to be divided out among the types) would be even lower, and Jeff and I would be even bigger freaks of nature than originally thought. She couldn’t tell me the number of cases they have or how many they receive each year, ostensibly because of a computer problem. I felt a little irritated that she didn’t offer to get back to me when her computer started working again, but I got the distinct impression that she was annoyed by my questions. That makes me pretty mad, because I am giving them my DNA. They could at least reciprocate with a little information.

Update: Since writing the above post I have been in contact with a few other SRPS families! We are so excited about this development. I will post about it soon.

Monday, 13 October 2008

Beard All Gone

I shaved my beard on Friday...my dad beard.

I started growing a beard in January after we found out that Amy was pregnant. This was the first time I had intentionally grown a full beard as I have always been a little self conscious of my somewhat patchy and asymmetric distribution of facial hair. However, as I explained to friends months later (after we went public with our expectancy), both Amy and I come from "bearded-dad" families (although my dad was better known for his awesome mustache), so it seemed appropriately dad-like for me to go for it. The ability to cultivate a good beard seemed to me tied to fatherhood.

Baby Jeff with his dad
Baby Amy with her mom and dad
I think it took a few weeks for people to notice, or at least to comment on, my beard, although I suppose that it isn't all that unusual for men to grow beards in January in Chicago. For me, in those months when we were keeping Amy's pregnancy a secret from (almost) everyone, my beard enabled me to tangibly acknowledge the change taking place in Amy’s and my life together.

We reached the twelve week mark near the end of March, so we thought it would be funny to announce the pregnancy on April 1st. We further decided that the fastest way to get the word out in California, Illinois, and beyond would be via Facebook. So, on the morning of April Fools Day, Amy wrote that she was "eating breakfast for two" and I wrote that I was "cultivating my dad beard." My private way of declaring my impending fatherhood became part of the coordinated public revealing.

I hadn't planned on keeping the beard throughout the entire pregnancy. I wanted two things: 1) to be able to grow a beard, and 2) to have a beard in October when I welcomed my child into the world. I figured I would shave it off before summer and grow it back in the fall. After all, who wants a beard in August?

Those plans, like so many others, changed after our first ultrasound in late May.

Leah's dad had a beard on the day she was born; the same beard he grew for her when he first found out she was coming.


I kept the dad beard long after Leah had gone. My beard was a part of my relationship with my little girl, and shaving it would not just be shaving it. Since the beard was a symbol to me, shedding it should be a ritual. I decided that I would shave on the day after Leah should have arrived. So, I shaved on Friday. In doing so I acknowledge the loss that we continue to experience.

My beard will grow back, but it will never be the same.

Saturday, 11 October 2008

Thank You

I just wanted to post a quick thank you to all of you for your comments, emails, facebook messages, cards, and most of all, for your prayers. I wish I had the energy to respond to each of you to let you know how much your words mean to us, but I just don't right now. Thank you.

Thursday, 9 October 2008

October 9th

In honor of Leah's original due date (today, October 9th), we decided to share the slidshow put together by Deanna, our lead photographer from NILMDTS.

To view the slideshow, which is set to music, click on Leah's footprints below.

Sunday, 5 October 2008

It’s My Party and I’ll Cry if I Want To

Today is my 28th birthday. And I don’t feel like celebrating.

I am grateful for another year of life, but this isn’t a season of celebration for me, it is a season of mourning.

Today I should resemble a small whale. I should have an aching back and numerous stretch marks. I should have a bag packed with pajamas and snacks ready to grab and take to the hospital. I should have a crib set up and a dresser full of little pink clothes.

Instead I have a memory box with footprints and blankets, pictures, a scrapbook, and a little teddy bear. It is not a fair trade.

I cannot both deal with the reality of Leah’s death and enjoy this day. And I’m giving myself permission to feel like not celebrating, and to do what I want. After all, it is my party.

A friend of mine sent me some information on Jewish mourning, and it has been invaluable to me as I learn to accept the burdens of sorrow. Jewish tradition requires stages of mourning, during which the community accepts that a grieving person will not participate in certain activities. As time passes, the bereaved person slowly reenters "normal" life. Although I have not specifically observed any of these stages, learning about them has validated many of my instincts and given me the courage to take things at my own pace.

Although I love the book of Ecclesiastes, I have never identified with the "time for everything" section, until now. Someday it will be our time to laugh and to dance. For now, it is time to weep and to mourn.

Ecclesiastes 3

1 There is a time for everything,
and a season for every activity under heaven:

2 a time to be born and a time to die,
a time to plant and a time to uproot,

3 a time to kill and a time to heal,
a time to tear down and a time to build,

4 a time to weep and a time to laugh,
a time to mourn and a time to dance,

5 a time to scatter stones and a time to gather them,
a time to embrace and a time to refrain,

6 a time to search and a time to give up,
a time to keep and a time to throw away,

7 a time to tear and a time to mend,
a time to be silent and a time to speak,

8 a time to love and a time to hate,
a time for war and a time for peace.

9 What does the worker gain from his toil? 10 I have seen the burden God has laid on men. 11 He has made everything beautiful in its time. He has also set eternity in the hearts of men; yet they cannot fathom what God has done from beginning to end. 12 I know that there is nothing better for men than to be happy and do good while they live. 13 That everyone may eat and drink, and find satisfaction in all his toil—this is the gift of God. 14 I know that everything God does will endure forever; nothing can be added to it and nothing taken from it. God does it so that men will revere him.

Friday, 3 October 2008

You've Got Mail

Today, yet again, I opened my mailbox to find a BabiesRUs catalog. Since Leah's original due date is fast approaching we have been receiving an increased amount of baby-related mail. Tiny diapers with cards reminding us that we're "almost there," coupons to entice up to stock up on baby supplies: you name it, we get it, and we don’t want it.

If only I had never given my name to those people at Mimi Maternity. Of course, at the time I had no reason to suspect that I wouldn't want to receive samples and coupons. I was passed the 12 week mark and starting to get pudgy. My sister Emily and I were out shopping and having fun trying to find cute maternity wear. I had no reason not to give them my due date and get on a mailing list. Had everything worked out we would have been excited to be getting all this junk in the mail.

For a while I had stopped getting the mail at all, because getting the ads and catalogs was too emotionally disruptive for me. Now that I am doing better, and (this week) waiting for a packet from our adoption agency, I am checking the mail again. Usually I'm fine with whatever mail we receive, maybe a little sad, but when I saw that catalog I was mad, because I asked for them to stop sending it a long time ago.

I have tried to get my name taken off these lists by calling numbers and punching in my address...but it doesn't seem to be working. Today I had to call and speak with a customer service agent to have my address removed, since I clearly can't rely on automated systems. She asked why I wanted to be removed from the list, and I said "My baby died and I can't take getting your mail." Then I totally lost it. She felt really badly, and issued a complaint on my behalf. I just hope it works. There should be an easier way to do this.

Tuesday, 30 September 2008

Resting Place?

On Sunday afternoon we visited Leah’s grave. We had been at a church retreat about a half-hour from Waukesha, so the timing seemed right to go. As soon as we left the retreat grounds and began our journey I felt enveloped by a wave of pain and sadness. We got a little bit lost on the way there (thanks Wisconsin for the lame detour signs), and it looked like it would start raining at any time, However, much like the day that we buried Leah, by the time we arrived at the cemetery the sun was shining warmly from a clear blue sky.

My biggest fear was quickly allayed when I saw that her headstone turned out perfectly. They spelled everything right and we loved how the flower and cross design turned out.

I could see the lines in the dirt from where they cut the sod and replaced it after they buried her. The grass hasn’t grown enough to cover the scars in the earth.

I cleared the dead leaves from her grave. I know the wind will cover it back up soon, but I didn’t want to leave it cluttered.

It was hard to be there, and weird. It was such a contrast from the last time we were there, for her funeral. This time it was just me and Jeff. I think we may have been the only people in the whole place. Where there was once a tent filled with many friends and family, there were now only leaves. It was very quiet, calm, even beautiful, but not peaceful.

There is no peace in my baby being in the ground.



Philippians 3:20-21 (New Living Translation)

20 But we are citizens of heaven, where the Lord Jesus Christ lives. And we are eagerly waiting for him to return as our Savior. 21 He will take our weak mortal bodies and change them into glorious bodies like his own, using the same power with which he will bring everything under his control.

Saturday, 27 September 2008

Installed

Tomorrow we will be going to Waukesha to visit Leah’s grave. We recently received notice that her headstone was installed, so we want to see that too (it was actually more of a bill than a notification, but we got the information we wanted).

I am apprehensive about going. It has been a hard week. This week marked three months since Leah’s birth, and we are fast approaching her original due date. Although many good things have been happening lately that have lifted our spirits, we continue to mourn our precious baby. Please pray for us as we make our pilgrimage.

I know that it is only Leah’s body there in the ground. She is in the arms of her Heavenly Father. Nevertheless it still hurts to think about her little body in that tiny casketin the ground, when I want her in my arms. She should be in my arms.

Wednesday, 24 September 2008

Three Months Today


Miss you, little lady.

Tuesday, 23 September 2008

Mountains of Paperwork

Since having another child the old-fashioned way carries so many risks for us, we have decided to pursue adoption. We decided to get started now since adoptions take so long to complete, so I began doing some internet research. At first the results were very discouraging. The first agency I called wouldn’t consider us because of our income, so I gave up, assuming that all agencies would have the same standards. After a few friends encouraged me to keep looking into it I found an agency that was willing to take into account our imminent graduations, and therefore soon to be rising income (hopefully anyway), when considering us as candidates for adoption. We meet state requirements (125% of poverty level), so it is really a matter of convincing an agency that we will be able to meet a child’s needs and pay the adoption fees. It appears we may be succeeding on that front.

Today we met with a social worker from the agency we want to use for our home study (the certification from the state of Illinois). She was very helpful, and I think she will be great to work with. Now we have many forms to fill out, and decisions to make.

I also got a call from our international agency. As of right now it looks like we will be adopting from Uganda. We will have a better idea of that once the international agency can review our home study and make sure that we are good candidates from the perspective of the Ugandan government.

One nice thing about the length of the adoption process is that it will give us plenty of time to continue to grieve for Leah. I know that it will also be frustrating to wait, but I am working on trusting in God’s timing.

Sunday, 21 September 2008

Breathing Room

This last week Jeff and I were in Estes Park, Colorado for the fifteenth International Workshop on Oxide Electronics. Jeff had to go to present a poster on his research, and I tagged along for fun. Needless to say, in order to have that fun I did not attend any part of the workshop except for the meals. Instead I slept in, read books, took walks, went on hikes, soaked in the hot tub, did a tour, and went to museums. The time away was really helpful for me. I feel like God really used the time to give me some space from my grief, and to give me strength to move forward.

As I hiked in Rocky Mountain National Park, amidst the grandeur of incredibly high mountains, pristine lakes, roaring rivers, and golden aspens, I felt God’s amazing care for me in my pain. Throughout this time Jeff and I have continuously felt his care through the love and provision of our community of friends and their support, but this was a different feeling. God directly created the Rockies, the rivers, the waterfalls, the lakes, the trees, the critters, the colors and the scents that comforted me. As I climbed the mountain I was struck by God’s perfect planning. He knew I would need this time and space to heal long before I did. When the IWOE planning committee met two years ago to choose a location, God already knew that I would need this. He knew the benefits before Jeff’s advisors told him he should go. I am so thankful for our time in Estes Park.

Things went well for Jeff too, and he claims that the workshop was very interesting. He got some good feedback on his research and made some important connections, including one that may lead to a collaboration in the future. He came back feeling excited about his work and energized to finish his project.

We didn’t have a chance to celebrate our anniversary this year (five years), as our anniversary occurred within a month of Leah’s birth and I was not up for going anywhere at that point. So we took an extra day in Estes Park to go hiking and sight-seeing together. It was fun to celebrate and just enjoy each other’s company.

Saturday, 13 September 2008

Mom's Journal



My Mom wrote down her perspective of our experiences, and she recently sent them my way. I thought I would share her view point with all of you.

Tuesday morning Amy called about 6:30. She was dilated to 7. I dressed and Bill dropped me off. The Cook catheter did its job and she was dilated to 7. She was not fully effaced yet. The doctor came in and gave the epidural early because of the special circumstances. The pitocin and the epidural were begun. The process speed up a bit and Amy was in no pain and still very cognizant. When she was ready, the doctor was in a C-section so we waited until 2:00. Then they began to prepare everything. Amy’s medication had been lightened up bit so could feel to push. With two or three pushes Leah was born.

She moved her arms a little and opened one eye.

She was beautiful, not perfect but beautiful. She had 7 fingers on one hand, 6 toes on one foot. One foot was perfect with the little crease line on the bottom and pudgy. She had new baby color and her heart beat for about 45 minutes. She was a fighter. Her head was perfect. She weighed 1 pound 6 oz and was 9 and ½ inches long. Her hands were not formed well and her arms were short. Her legs were short but had great form.

The last nurse we had was Sarah. She said she was an Orthodox Jew. She told me this when I had asked to carry Leah to the room where she would wait to be taken for the autopsy. She said that being kind to her (Leah) in death was the last great thing you could do for a person.

I placed Leah in a nice white bag and she zipped her and put her in the refrigerator. She was wrapped in her cute white, blue and pink hospital baby blanket and I carefully placed her in the bag. I got to carry her down the hallway cradled in my arms. I said goodbye and kissed her one last time and went back to take care of my very first baby, Amy. My Amy who in spite of a horrific experience was brave and gave the gift of life to Leah and an opportunity to Jeff to hold his little girl.

On our nurses:
Lori was our first nurse who stayed with us all day and who was our nurse the full second day. When I told her that she was a gift from God to us she teared up and said “Thank you and I needed to hear that” She said she would be praying for all of us.

I get the sense that this young woman was sensing the same presence of God that we all knew was surrounding us.

Amanda the night nurse very talkative. She came in all night and checked on Amy as she slept. When I thanked her the morning of Leah’s birth, She said ”that she had attended many difficult births but she felt a spirit in the experience that was amazing. She said ”All the nurses at the station were talking about it.”

Thursday, 11 September 2008

Confirmed: Short-rib Polydactyly

Last week we got the call from our geneticist saying that Cedars confirmed our diagnosis of Short-rib Polydactyly Syndrome (SRPS). I was really surprised to hear from her so soon, because we were originally told that confirmation would take 3 to 6 months. Finding out that the experts agreed with the diagnosis of SRPS really upset me, which took me by surprise because I thought that I had accepted the original diagnosis. I didn’t realize that I still had hope that they were wrong.

The doctors at Cedars also assigned us a type, Type 1- Saldino-Noonan. The medical literature on SRPS debates the accuracy of typing cases because SRPS has so many possible variations. Right now doctors have identified four types of SRPS, and each case is assigned to one of these sub-categories. However, many of the case studies (which is what most of the medical literature consists of) demonstrate that often the babies diagnosed with SRPS don't fit very well in any of the types. This leads scientists to believe that SRPS might have a spectrum of expression.

If there are indeed types, and SRPS is caused by different variations in whatever gene it effects, then Jeff and I could expect future pregnancies affected by SRPS to work out very similarly to Leah's. We would expect our gene combination to result in many of the same problems next time around. The timeline on the pregnancy might differ, based on the progression of the hydrops, but we would expect to see the rest of her problems repeated.

However, if SRPS has a spectrum of expression then we would have no idea what to expect. Not all babies with SRPS have cystic kidneys that cause oligohydramnios (lack of fluid), in fact often skeletal dysplasia results in hydramnios (an excess of fluid). SRPS babies can have other internal anomalies, as well as cleft lips and palates, ear deformities, and sex reversal. Some babies with SRPS even have a normal number of fingers and toes, although most have extra. No babies with SRPS survive.

We are hoping that they discover that typing is accurate, although it appears that the consensus is leaning towards spectrum. I would rather have a defined set of things to expect should we choose to get pregnant again, especially now that I know how many bad things can happen with SRPS, thanks to all my research.

I mentioned earlier that Cedars gave us our diagnosis more quickly than we expected. Apparently they worked to get it done quickly because they are actively researching SRPS right now. They believe they are very close to identifying the gene, in fact it may be only months before they find it. Jeff and I have been accepted into their research study, so soon we will be signing more consent forms and sending them our blood.

Friday, 5 September 2008

Scrapbooking is a Man's Work

After Leah's funeral, and when all the family except Amy's mom went back home to California, one of the first things we started working on was a scrapbook for Leah. Now, neither of us is in to scrapbooking, really at all, but we both felt that it was important, not just for our grieving process, but that it was something we needed to give to our daughter. Leah deserved it.

Amy and her mom spent two entire days driving all over the north shore picking up all sorts of scrapbooking supplies from the very basic necessities (e.g. fancy scissors, paper) to the more baby-girl-centric stickers and such, and of course an appropriately pink album. We printed out copies of our favorite snapshots from the time when the pregnancy was a secret between the two of us to the reception following Leah's memorial service. It would be some time before we had our pictures from Now I Lay Me Down to Sleep, but with our personal photos printed out we set to work.

We started on July 4th and worked on Leah's scrapbook all long weekend while parked in front of the TV watching Prime Suspect, the Inspector Lynley Mysteries, a few movies I don't recall, and various other British television series all checked out from the Evanston library. Amy asserts that in this initial period, which I will call Scrapbooking Phase 1 or SP1, she became "the scrapbooking queen," a true feat since she has always loathed the activity. In my recollection, however, we both worked at more or less the same pace. We would each work on a separate page simultaneously, although we both contributed to the artistic direction of all of the pages.

Activity during SP1 naturally slowed somewhat during the week, as I had gone back to work at that point, but we still spent several hours each evening working on Leah's scrapbook. We continued steadily putting together pages with our snapshots (as well as other items such as Amy's and Leah's hospital bracelets, Melody's letter, and the program from Leah's memorial service) until we ran out of photos to work with. At that point we decided to put scrapbooking on hold until we received our Now I Lay Me Down to Sleep photos.

It has been almost a month since we got our NILMDTS photos from Deanna, and a little over a week since we started Scrapbooking Phase 2, or SP2 (there was some out-of-state travel in between). A strange thing has happened between SP1 and SP2. It turns out that my meticulous nature lends itself to scrapbooking quite well. A little too well perhaps, as somehow, somewhere along the way I became the primary scrapbooker in our family. Amy assures me that if not for her loathing of scrapbooking she would not let my meticulousness get between her and working on the scrapbook. As it stands, she is happy to give artistic input and leave the cutting, pasting, and more cutting and pasting to me. In the Klug family, scrapbooking is a man’s work.

Tuesday, 2 September 2008

Information for Our Relatives

Now that Jeff and I have been identified as carriers of a lethal genetic mutation, you may be wondering what this means about your genes. Some of you will also be carriers of this gene. At this point we have no information about which side of our family the gene came from, and currently no test exists to identify carriers. So what are the odds of you carrying the gene?

If one of our mutual grandparents was the carrier, then your parent has a 50% chance of having the gene. If they did inherit it, then there is a 50% chance that they passed it to you. If you inherited it, there is a 50% chance you will pass it on to your children. Because the gene is recessive, it will not affect you or your carrier children. The only way it becomes a problem is if you or your children marry someone who also carries the gene. If both parents carry the gene there is a 25% chance, for each pregnancy, of having a child born with short-rib polydactyly.

There is no way to tell if you carry the gene. However, even if you do it is very unlikely that you will marry another carrier, provided you avoid marrying your relatives, which you should probably do anyway. Research is being done at Cedars-Sinai Medical Center to identify the gene for short-rib polydactyly. We have been told that it is one of their most active research endeavors, and that they expect to identify the gene within five years, but possibly much sooner. At that point my parents will be tested to find out which one of them carries the gene. Based on that we can determine which side of the family this came from, and those who wish to can undergo testing.

Until we know which type of short-rib poydactyly Leah had, it is impossible to know the incidence rate and the rate of carriers in the general population. Our genetic counselor has indicated to us that all types are extremely rare, and that it is possible that outside of our relatives we do not know any other carriers. When we know more we will pass on the information.