2 more days!

On Thursday at this time, assuming our plane is not delayed, we will be in the air, traveling to the island of Maui. This will most likely be my last post until after we return on 12/2. I also probably will not be reading other blogs or commenting during our vacation.

Saturday will be Madelyn’s 3-month birthday. We have decided to photograph her name in the sand at sunrise that morning in remembrance of her. I hear Hawaiian sunrises are beautiful.

I will give a detailed report of our vacation, complete with photos, when I return.

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See

I know I’ve already mentioned Steven Curtis Chapman’s new album, but now that I’ve listened to all of the songs, I have found a few for which I want to share the lyrics.

The song below is called “See” and recalled to my mind the scripture that was read at Madelyn’s memorial service: I Corinthians 13:12 (NLT) “Now we see things imperfectly as in a cloudy mirror, but then we will see everything with perfect clarity. All that I know now is partial and incomplete, but then I will know everything completely, just as God now knows me completely.”

If I could wish for anything in the world, it would be to have Madelyn here with me. I cannot possibly understand why things happened the way they did. I only know that Madelyn is in a place where she’ll never know pain. No one will ever speak harsh words to her. Her heart will never be broken. She’ll never endure the pain of losing a child. While there are so many good things I wish I could have watched her experience, I take comfort in knowing she is happy and free, and one day I will join her.

“See” by Steven Curtis Chapman

Right now all I can taste are bitter tears
And right now all I can see are clouds of sorrow
But from the other side of all this pain
Is that you I hear, laughing loud and calling out to me?

Saying “See, it’s everything you said that it would be,
And even better than you would believe.
And I’m counting down the days until you’re here with me,
And finally, you’ll see.”

But right now, all I can say is “Lord, how long
Before you come and take away this aching?”
This night of weeping seems to have no end.
But when the morning light breaks through,
We’ll open up our eyes and we will see

It’s everything He said that it would be
And even better than we would believe
And he’s counting down the days ’til He says “Come with me.”
And finally he’ll wipe every tear from our eyes
And make everything new, just like he promised
Wait and see, just wait and see, wait and see

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A bit of everything

My final semester of school is winding down, and I am going crazy trying to get everything done. Between now and mid-December I must complete four case studies (4-6 pages apiece), an 8-10 page paper, a 10-15 page paper, and some other miscellaneous assignments. This week I have been busy trying to finish two other case studies for a class that ends this week. In addition to all of that, I am now at work three days a week. For someone who spent so much time on bed rest this year, it has been more than a little overwhelming. I say all of this to inform those of you who follow my blog, and those of you whose blogs I follow, that you might not be hearing from me as much over the next month. However, I’m sure I will be back in full force once I finish the semester, so don’t give up on me or my blog!

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Next week, we will be getting a nice distraction from all of the craziness. As I mentioned several weeks ago, Nathan and I leave for Hawaii on Thanksgiving morning. We have chosen the island of Maui, and we look forward to several days of rest and relaxation. We will leave the island on the evening of December 1, but won’t be home until the morning of December 2. After our return, things will likely be even more hectic as I will be in the final weeks of the semester. However, I’m sure getting away will be worth any extra stress we must inflict upon ourselves in order to get everything accomplished on time.

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I scheduled a phone consultation with an RE (reproductive endocrinologist) for December 5. Hopefully Nathan and I will be able to get all of our questions answered regarding our options and find some clarity about our situation. Since I found out we are both carriers of SLOS, I have played the options over and over in my head. It will be such a relief to me to have a definite plan and goals in place.

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On the evening of December 6, we will be attending an Angel of Hope Candlelight Memorial, which is open to all who have lost a child. For those of you who are interested in doing something similar, check out this link. The Compassionate Friends is sponsoring a worldwide candle lighting on December 13, 2009. They have a list by state of the services that are available.

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I’m still grieving deeply for my baby girl. However, I am also learning to incorporate her into my life and am finding my new normal. The pain remains a constant presence, though it generally stays below the surface these days. However, the surface is very shallow. The slightest triggers can boost the pain’s power so it overcomes me. While the difference between now and the first six weeks after my loss is remarkable, I know the road ahead will remain bumpy for a long time.

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Thank you to Holly

Holly from Caring for Carleigh was so thoughtful as to send me this picture in honor of Madelyn. Seeing it in my inbox absolutely made my day.
Thank you Holly!

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The Rest of the Story

Today I realized my blog is not complete. It begins when worry and fear was introduced into my pregnancy. It documents ultrasound after ultrasound, the many decisions we were forced to make, my stay in the hospital, and the hope we had in the midst of all the uncertainty. It tells the story of Madelyn’s birth and of her leaving this world too soon. Contained in the pages of this blog is the grief I tried so desperately to put into words, even when no words were adequate. However, this blog does not tell the entire story.

There was a time when my pregnancy was full of nothing but joy and excitement. I was always a little paranoid about miscarriages, especially since we were quite sure I miscarried in August 2008. I was never 100% sure it happened, but the symptoms (including a positive pregnancy test) were there, and it was enough to make me worry in my first trimester with Madelyn. However, my investment in a home Doppler allowed me the opportunity to check in and listen to that little heartbeat as often as I wanted. I only indulged once a week, but it was my favorite sound in the world.

I didn’t do a very good job of journaling my pregnancy until I started this blog. So, I’d like to go back and tell the first half of the story. I won’t remember everything today, but from time to time a memory comes to mind, and when it does, I will share. I want to document every single memory I have of Madelyn’s life, both in the womb and out of it. After all, these memories are all I have. One day I will piece them all together in an organized fashion, but for now, I will share them as I remember.

Tonight as I was emailing a friend, I remembered. It was a chilly February evening. I was at Kohl’s with my friends after a girls’ night out. I was 6 or 7 weeks pregnant, and so excited. I was scared to believe it was possible, but so happy that in nine long months I would be holding my baby in my arms. I wanted to buy something for my baby. I couldn’t buy clothes yet; everything was too gender-specific. The store was getting ready to close for the evening, and still I hadn’t found a single thing. Then one of my friends showed me the cutest little baby toy: it was a green and yellow plush phony that rattled ever so slightly. As the final store-closing warning blasted over the intercom, I grabbed the pony and headed to the front. I was ecstatic – this was the first thing I, or anyone else, had bought for my baby.

After her death, we decided the pony belonged to her, and we chose to bury it with her. I only wish I had taken a picture of it first.

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Smith-Lemli-Opitz

Yesterday, the geneticist called with my test results. It turns out, I am also a carrier of Smith-Lemli-Opitz.

Apparently 1/30 people are carriers. The chance that two carriers would reproduce together is 1/900. When you add to that mix the 75% chance each pregnancy will not be affected, the odds become small that a baby will be born with this genetic disorder. Somehow, we were the 1/900, and then Madelyn was the 25%. Of course, Madelyn wasn’t tested directly so they can’t say with absolute certainty she had Smith-Lemli-Opitz Syndrome (“SLOS”). However, as we are both carriers and all the symptoms matched, we can be very reasonably sure.

For those of you who (like me) don’t remember how genes work, here is a bit of a refresher. Every person has recessive genes and dominant genes. In our case, we each have one unaffected dominant gene, and one recessive gene with the SLOS mutation. Our children will get one gene copy from each of us. So, a baby could get the dominant gene from each of us, the dominant gene from me and the recessive gene from Nathan, or the recessive gene from me and the dominant gene from Nathan. In each of these three cases the baby would be unaffected, which is where the 75% chance comes in (25% chance for each of the three). Then, there is the 25% chance the baby will receive a copy of each of our recessive genes, and in this case the baby will be affected. Most people never know they are carriers of something until or unless they have a child that is affected. Things can be passed down for centuries of family history and never appear. This site has a nice chart that shows what I have just described.

On one hand, I am glad we know a reason. I no longer have to wonder if it was the ham I ate on Easter Sunday, or toxoplasmosis from my cat, or the face cream I was using before I realized some of the ingredients weren’t recommended during pregnancy. I can no longer blame something I did during pregnancy. However, I cannot say I don’t feel at all responsible. Our genes were harmful to our baby. I realize there is no way we could have known beforehand, but it still is a bit disturbing.

On the other hand, I hate what this means for future pregnancies. Although it is good to know this information, it means the problems with Madelyn were not a fluke.

A few options exist that can be done in conjunction with in vitro fertilization (“IVF”), but we’re not sure about them. One option (PGD) involves pre-screening of embryos and implantation of embryos that are unaffected. However, any embryos that are affected would be destroyed, as they would not be eligible for donation to other families. Another option (CGH) involves the screening of eggs before using them to create an embryo. This option is more appealing to us, but I do not know if SLOS is on the list of things CGH can pre-screen.

We also have the option to adopt. We could adopt a baby that is already born, though waiting lists are usually long for this. Our next pregnancy could also come through embryo adoption/donation.

PGD, CGH, and embryo adoption all would be used in conjunction with IVF. So our next step will be to make an appointment with a reproductive endocrinologist (“RE”) to explore our options, though I’m not sure when we will do that.

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Regaining Strength

Today it has been ten weeks, and I think I am finally regaining some strength.

Physically, I am able to walk briskly and complete an entire workout routine without too much trouble. The pregnancy weight is not coming off as quickly as I would have liked, but I know it will.

Spiritually, I find myself trusting God again. I still question the injustice of it all, but I also believe God knew this would happen before it ever did, and He is able to work with it. So while I absolutely do not believe God “willed” Madelyn’s death, I do believe He has a plan for our future.

Emotionally, things are a little more complicated. I have found, however, that bad weeks are turning into bad days, and there are many more good days mixed in than before.

I knew I was starting to heal when I recently saw a baby, smiled, and meant it. I’m not saying I didn’t feel any pain at all, or that I was not reminded of what I should have right now. Instead, my focus was on what I will have again.

Am I moving on? Absolutely not. One never moves on after losing a child.
Healing? I think I may be headed that direction.

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Beauty Will Rise

Holly posted a youtube video of the song “Heaven is the Face” by Steven Curtis Chapman (lyrics at the end of this post). I looked up the song on iTunes, and realized he has a new album called “Beauty Will Rise” in which every song addresses themes of loss. For those of you who don’t know the story, he lost his little girl in a tragic accident a little over a year ago.

I wanted to share the lyrics to “Heaven is the Pain” because while he describes a different set of memories than mine, I have felt this way so many times. I’ve never wanted to go to heaven more than since the day Madelyn made it her home.

“Heaven is the Face”
Steven Curtis Chapman

Heaven is the face of a little girl
With dark brown eyes
That disappear when she smiles.
Heaven is the place
Where she calls my name
Says, “Daddy please come play with me for awhile.”

Chorus:

God, I know, it’s all of this and so much more,
But God, You know, that this is what I’m aching for.
God, you know, I just can’t see beyond the door.
So right now…

Heaven is the sound of her breathing deep,
Lying on my chest, falling fast asleep while I sing.
And Heaven is the weight of her in my arms,
Being there to keep her safe from harm while she dreams

And God, I know, it’s all of this and so much more,
But God, You know, that this is what I’m longing for
God, you know, I just can’t see beyond the door.

Bridge:

But in my mind’s eye I can see a place
Where Your glory fills every empty space.
All the cancer is gone,
Every mouth is fed,
And there’s no one left in the orphans’ bed.
Every lonely heart finds their one true love,
And there’s no more goodbye,
And no more not enough,
And there’s no more enemy (no more).

Heaven is a sweet, maple syrup kiss
And a thousand other little things I miss with her gone.
Heaven is the place where she takes my hand
And leads me to You,
And we both run into Your arms.

Oh God, I know, it’s so much more than I can dream.
It’s far beyond anything I can conceive.
So God, You know, I’m trusting You until I see
Heaven in the face of my little girl,
Heaven in the face of my little girl.

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Memorial Poems & Songs Page

One of the top searches people have used leading them to my blog has been “memorial service songs”. When I was trying to find songs for Madelyn’s memorial service I did one of these searches myself, and it took me quite a lot of digging to find anything. However, I have stumbled across many more songs since that time. So, I decided to create this page where I will keep an organized list of songs and poems that can be used at the memorial service of a baby or simply for comfort.

I have started the list. If anyone has any song or poem suggestions, please let me know.

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Missing Madelyn

I have sat here typing and deleting over and over again, trying to find the right words to convey what I am feeling. I still don’t really know what to say. I’m missing Madelyn so much, and I’m wishing she was back in my arms again. I would trade everything for a chance to hold her right now, even if just for a moment.

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