Sadness

I've added a new song to my playlist--I Will Carry You. Songwriters amaze me. There are some songs out there that touch the very soul of my existence. This is one of them. It often makes me wonder how the writers know what I'm going through, but I guess such is the human condition that we are bound to find others who are going through the same thoughts and feelings that we go through. (I've found mine on the trisomy18.org community board.)

I can't listen to this song without choking up. I cry out of sadness but also because there is such beauty in knowing that God is going to take care of Lily when she reaches Heaven, which the singer proclaims.

But there is more to my sadness. Dave and I stepped out of our comfort zones and visited the funeral home the other day to make funeral arrangements in the event Lily doesn't make it. I was crying before we even stepped through the door. It's such an odd thing, making these arrangements for your own child. Never in my life did I think I would have to do this for a baby.

I'm comforted that this funeral home will treat her as if she is a part of their own family. The director himself assured me that he would be the one handling her, and he gave me his promise. They are going to take care of us. We've decided not to have a viewing. That's a little too much. Dave suggested not having one, but the more I think about it, the more I realize I don't want to remember her that way. We're just going to keep it simple and have a small graveside service. She will be buried in the little church cemetery where my nana is buried. There's one angel who will take care of her.

Choosing the casket has been all up to me. Dave doesn't want to do that. I totally respect his need not to help. So I sat yesterday with the brochure in hand and looked at caskets. This was not a task I wanted to do alone. Not because I needed someone else's strength, but because I needed someone to assure me that I picked the perfect one for our little girl. Then there was the thought of what the casket represents. It's so hard to stay strong when you're imagining the finality the closing lid brings. That visit has put the weight of sadness back on my shoulders. Poor Lily. I hate that she feels this.

Nestea Plunge

I took the Nestea plunge when I fell in love with Dave. Yep, I just closed my eyes, opened my arms, and trustingly fell back into his love. I knew he would catch me, and I know today that he will never let me fall. Such is the power of his love.

I was talking to a colleague the other day about Lily. She told me how impressed she was with my strength. I tried to explain it but finally just said that it's like taking the Nestea plunge. I hold my decisions, close my eyes, open my arms, and trustingly fall back into Lily's and God's love. I truly know no other way to do it. I trust that they will lead the way.

After giving it more thought, I realized that that is the way I am going to make my decisions. With God holding her hand, I am going to let Lily show me what to do. It is going to be difficult because how many times does mother (and father) know best? But I am going to have to be still and listen. My ears will be perked to the boldness of her strength as well as to the whimpers when she's too tired to fight any longer. I will give deep respect to both. My decision to not have an emergency c-section (provided my life is not at risk) is based upon this trust. My heart tells me this is the way to go.

Ash Wednesday

Today is Ash Wednesday, and this day always takes me back to four years ago when I was trying to decide whether or not to go to South Africa to work in a village library for four weeks. I felt called to do so, but my calling meant I would be taken away from my girls. Such decisions are not easy.

It was Ash Wednesday when I made my decision and took that leap of faith. I had decided that day to attend my church's service, something I had never done before. When I got there and received the bulletin, the answer was written on the cover. (Unfortunately, I did not keep that bulletin and my long-term memory is horrible, so I don't remember the verse that was chosen for the service.) OK, I said. This seems pretty clear. Then the preacher began his sermon, and it spoke straight to my prayers regarding my decision. I think God was doing his best not to physically shake me into making my decision to go. When I got home, I submitted my application.

Fast forward to July 8, 2004. (I have my trusty journal to thank for that.) I'm standing in the airport, waiting in line to get to the terminal. I have just said goodbye to my children, and I'm crying. Things feel pretty hopeless. The guitar that I am taking with me as a gift broke a string, and I have no idea if I'll be able to purchase more strings there. The CDs I had planned to take with me as my comfort items were left in the car back at the hotel. How am I going to survive six weeks in a foreign country when I've never even been out of the country before? Plus, I said goodbye to my children.

When I got into the terminal, I decided to have a seat and calm down. I had decided to take a pocket-sized Message Bible along, so I took it out and randomly turned to a page. The first verse my eyes fell upon was 1 Timothy 2:1, "The first thing I want you to do is pray." I stopped and I prayed. And I knew I was going to be ok. I knew that this was where I was supposed to be.

Ash Wednesday always has a way of reminding me of that.

The Kindness of Strangers

If you were to sign on to the Trisomy18.org website and visit the discussion board, you would see a community of women who are on the same journey that my family and I are on. I am amazed at that community of women who may only know each other by screen names, yet they offer advice, comfort, prayers, tears, and hope. . .and sometimes, gifts.

I received a gift from Shannon, a woman I met because of this website's discussion board. Shannon has made a ministry out of creating little bracelets with the child's name on it and sending these bracelets to the mothers of children with conditions such as Trisomy 18. She's taken it one step further by taking a photograph of the bracelet and posting it on her blog. You can see Lily's bracelet by visiting http://whyamihereanyway.blogspot.com/. Scroll down to the February 8 post.

But that's not all. Shannon also sent a little hair bow, a preemie outfit, and a CD with some beautiful songs on it that could send the hardest of hearts into a crying fit. I received the CD today, so I listened to some of it on the way to the grocery store and back. When I got in the house, Dave told me that my nose was red and asked if it was cold outside. No, it was the CD. There's just something about driving down the road by yourself, listening whole-heartedly to music. If only it had been late at night down some country road with no cars around. Now that would have been more than this girl's heart could take. Powerful.

It's not that I'm expecting gifts. Actually, it's pretty much the opposite. It's just that I am deeply touched by the thought of the gift. It is such a sweet sentiment, but more than that, it is a gift of hope. That maybe, just maybe, Lily will get to experience wearing the bracelet, the outfit, the bow. She will look beautiful in them. Thank you, Shannon.

The Greater Good

Dave and I watched the movie Troy over the weekend. It's one of those movies, like Romeo and Juliet, where every time I watch it, I keep saying "what if." In R & J, what if Mercutio and Tybalt had not fought, what if the priest had not agreed to marry Romeo and Juliet, what if the priest had not given Juliet the potion, what if he had not been delayed so he could have made it to Romeo in time to tell him that Juliet had taken the potion, and the big one--what if Juliet had awaken just a few seconds earlier so her love, Romeo, would not have taken the poison? I've seen that movie probably 25 times, and I still say those words every time I watch it. It never fails. If only those "what if's" could have found some other destiny. Ah, therein lies the rub. Each time I have to remind myself that good came out of such tragedy--"doth with their death bury their parents' strife"--the war between the Capulets and the Montagues ended. The way I see it, the tragedy had to happen for their families' greater good.

Troy was basically the same way. What if Achilles had not been so stubborn? What if Hector had noticed it was Achilles' cousin he was fighting? What if Paris had never "stolen" Helen? Then Hector would not have died. Perhaps Achilles and his men would have sailed back to their land. What, then, would have become of the Greeks and their "greater good"?

I wonder about Lily in the same way. There are those "what if's," but I also wonder about the Greater Good. I think it's something that many of us mothers carrying babies with T-18 wonder about. I think it gives us comfort.

The appointment

Today's doctor's appointment really wasn't all that bad. I had a book, so my eyes burned holes in the pages to keep my concentration on anything other than the girl whose whole family was there to see her ultrasound (and it was a big family!). Unfortunately, my book ended a little too soon. I had to close my eyes and allow myself to doze for a few minutes.

It's always the exam room that really gets me. It made sense the first time--all the pregnancy posters hanging around--, but this time, the only poster was the cross-section of a woman's body. Maybe it's just my strength finally falters. Again, I had that lump rise up in my throat, and it took all I had to push it down. I think it was the view from the room. There was this house that was mostly hidden from the trees that surrounded it. Scenes like that always get me. It's so beautiful how the house tries to hide. I don't know why it got me thinking about Lily and wishing her strength, but that lump showed up again, and I had to go get a People magazine (which I rarely ever read) and strictly concentrate on Gwyenth Paltrow and how she's 40 years old.

Lily's heart beats at 150. It's been in the 140s and 130s, so this was a big surprise! The doctor doesn't seem to be concerned with the polyhydramnios, and he doesn't think we need to continue going to the high-risk doctor (= $avings!). He says he's talked to the neonatologist and wanted to know how that conversation went when Dave and I met with him. . .I did tell him today that I'll still need a referral. Oh, and he won't be around Master's week, so if I go into labor, one of his partners will have to deliver Lily.

Which leads me to the birth plan. That document I've been putting off for too long. It looks like Dave and I will need to get that in order within the next two weeks so I can take it in when I go for my next appointment. Then he can share it with his partners in the event I go into labor Master's week. I'm not looking forward to the decisions we're going to have to make. It's just not going to be easy to sit and listen if she becomes distressed during labor (because I've opted not to have an emergency c-section). I don't want our decisions to seem as if we've given up on Lily, but we're letting her strength guide us after her birth. My motherly selfishness wants her to fight for her life, even though my heart tells me that eventually, she'll tire of fighting. I can't let her go through ventilators and invasive means when she just wants to go to sleep and see Heaven. But I can't let her go, either. At least, I don't want to. And so my birth plan will have to teeter along both lines. I just don't know when it's right to cross them and when it's right to stay on this side. Making decisions has never been my strong point.

Another appointment

I have another doctor's appointment tomorrow. This one is just the routine OB/GYN visit, but they are the ones I always dread. I think I've toughened up to being around other pregnant women, although tomorrow may prove differently, but the doctor's attitude puts me in a mood. Twice, now, he's reminded me how he's talked to other doctors and how they've said they've never seen a T-18 baby survive. (Boy, Lily must not like this guy. It feels as if she's boxing him as I type!) I go in there and feel like I'm not important because my baby has a chromosomal defect. I hate it when people let others slip through the cracks.

Four weeks ago, my doctor told me that he would send a referral to the neonatologist. (Never mind that I've spoken to the neonatologist already. That was Molly's doing. However, the neonatologist did tell me that I would eventually need a referral.) I've called three times. The last time I called I was assured (not very kindly) that the nurse would get to it on Tuesday (last week). I still have not heard from anyone regarding this. Needless to say, it's going to take a good bit of patience and tongue-biting tomorrow.

I'm just frustrated because I've heard that my doctor is wonderful. I've yet to see it. I'm tempted to get another doctor, but I've got about 8 1/2 weeks left, so I wonder if it will be worth it. These feelings usually get stronger right before my appointment, and then I calm down for another month, so I'm just venting.

On a different note. . .I follow a blog, Praise You In This Storm. I'm very sad to say that today Loni, the author, went to the doctor and they couldn't find a heartbeat for little Maddie. Loni goes in for an induction tomorrow morning at 7:00. This is Loni's first child. Maddie had Triploidy, where every chromosome strand had an extra chromosome. I pray for this family that they find peace and understanding in this difficult time. I pray for their hearts to heal, but I know that will take time. I pray that tomorrow goes as smoothly as possible and that this family finds beauty in the sadness.

My complaints have become so minimal all of a sudden.

Blessing

I regularly visit the discussion board on www.trisomy18.org. I found the following article last night, which was really interesting because Dave and I recently had a talk similar to what this article discusses.

This article was posted in May 1980, unknown paper and author

Most women become mothers by accident, some by choice, a few by social pressure and a couple by habit.
This year 100,000 women will become mothers of handicapped children. Did you ever wonder how these mothers of handicappped children are chosen?
Somehow I visualize God hovering over Earth selecting His instruments for propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger.

"Armstrong, Beth; son; patron saint, Matthew. Forest, Marforie; daughter; patron saint, Cecilia.
"Rutledge, Carrie; twins; patron saint...Giver her Gerard. He's used to profanity."
Finally, He passes a name to an angel and smiles. "Give her a blind child."
The angel is curious. "Why this one God? She's so happy."
"Exactly," says God. "Could I give a child with a handicap to a mother who does not know laughter? That would be cruel."
"But has she patience?" asks the angel.
"I don't want her to have too much patience, or she will drown in a sea of self pity and despair. Once the shock and resentment wear off, she'll handle it."
"But Lord, I don't think she even believes in you."
God smiles. "No matter. I can fix that. This one is perfect. She has just enough selfishness."
The angel gasps. "Selfishness? Is that a virtue?"
God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a spoken word. She will never consider a step ordinary. When her child says 'Momma' for the first time, she will be present at a miracle and know it! When she describes a tree or a sunset to her blind child, she will see it as few people ever see my creations.
"I will permit her to see clearly the things I see -- ignorance, cruelty, prejudice -- and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life, because she is doing my work as surely as she is here by my side."
"And what about her patron saint?" asks the angel, pen poised in midair.
God smiles. "A mirror will suffice."

I thought I would share that because, of late, I've been considering myself blessed to have this experience with Lily. I don't think too many people understand that. No, I didn't ask for a baby with Trisomy 18. I would not wish this on my worst enemy. But this has changed my life, and it will change even more.

I have a choice in how I look at this. I could look at it as if God is punishing me for things I've done in the past. I believe too much in the God of the New Testament to think that He's that type of punisher. I could blame nature and say this is just the way it happened, be the 1 in 3,000 statistic. I hate being a negative statistic. It just doesn't make me feel good about myself. Or I can think that maybe God looked down at me and Dave and gave us this gift. Perhaps He saw in us something that confirmed that we are the right ones for this baby.

I do not say this with conceit. All I have done is accepted this gift and made a promise that I'll do the best I can for her. I have learned that this is one gift that can never be taken for granted.

I know this won't be easy. I know the outcome has the potential to cast me into a pit of despair I've never visited before. I don't look forward to that. But I sit here tonight, and I can't help feeling that this child inside of me, the one whose every cell possesses an extra 18th chromosome, is a blessing.

Things I Love--Happy Valentine's Day

1. My children's laughter

2. That my husband has ADD

3. That my daughters have talents I can only dream of possessing

4. When my little boy gets dirty

5. That Lily kicked tonight

6. That Dave wears the pants in the family (but he is often reminded that I am the belt that holds those pants up!) :)

7. That there are people cheering Lily on

8. That Rani smiles at being a "poor college student"

9. That Autumn will be going to Honduras this summer

10. That Gabriel lifts my shirt to look at my belly and kiss it and lay his head on it

11. That Lily just gave a big kick

12. That Dave makes me laugh so hard I get laughter-induced asthma

13. That my mother is the person she is

14. That Dave makes me feel younger than he is (I'm six years older than he is)

15. That I am blessed with a wonderful husband, two beautiful daughters, a handsome, rambunctious little boy, and a strong little flower

Comfortably Numb

I had another ultrasound today. For the most part, no changes. They're still thinking Lily has a pelvic kidney, but no heart abnormalities have been found. Still, the doctors can't promise anything about her birth. There seems to be hypoplasia of the cerebellum (?), which indicates neurological deficiencies, but that has always been expected. Oh, and I now have polyhydramnios--too much amniotic fluid--which could possibly send me into preterm labor and make my pregnancy uncomfortable, among other things.

Dave and I also saw the neonatologist. He recommends letting Lily guide us. So, if she's strong and willing to fight, we leave it up to her. We're pretty convinced not to have an emergency c-section. The major factor driving that decision is that I want to be a coherent as possible when she's born. I don't want any possibility that I'll forget the few moments I may have with her.

I'm thinking of Pink Floyd's song, "Comfortably Numb," tonight. Not really listening to the lyrics, I have always thought of that song as some drug induced stupor that the band members were trying to describe. I've never done drugs, so I have no idea if that's what they were talking about, but today I have felt comfortably numb. I did not cry or even feel like crying while getting my ultrasound. Nor did I cry while talking to the neonatologist. While we were with him, my mind kept thinking, "This is a dream. This can't be happening. We shouldn't have to be here talking with this man." Feeling has flown out the window today, and it's comfortable. I'm not weighted by sadness, but I'm laughing with the tracks. I don't really like being this way because my body feels like a void--I'm just going through the motions, no control. On the flip side, I've cried at every ultrasound, so it was a bit of a relief not to cry at today's. It was nice to be able to express myself to the neonatologist and not need a tissue. I just needed a day off.

Death's gift

A few days before my nana died, I had the chance to speak to a preacher friend of mine about death. I shared our conversation with my mom, and she asked me to write it down. My nana's minister read it at her memorial service. Here's what I wrote:

How lonely the past few weeks have been for us, and how the loneliness will continue in those times when we recount our favorite moments and we wonder if we can go on without ever experiencing them again. I have prayed for the right prayers, the answers to them, and the ability to accept a response that might break my heart. There have been moments when I wanted to pray for life, but in praying for life, I denied her Heaven. Yet in praying for Heaven, I denied myself time with an earthly angel. There wasn't much comfort in these contradictory petitions.

Thankfully, I have learned on this journey through faith. I credit a friend for sharing this with me, so in hopes of offering comfort, I am passing it on to you.

Instead of thinking of death as a loss, consider it a gift. For without the knowledge that death is at all times waiting for us, we would fail to cherish the moments that we have with those we love.

This is hard to accept at this moment, but then there will be moments when I am with those I love dearly, and I will value and treasure and hold every second that I am able to spend with them, every smile, every pearl of laughter, and even every dissonant yelp.

And as much as I want to ward death from my dear ones, there is a part of me that will bow down and honor and respect its right to take those I love away, for in that taking, there is a giving--a smile, a pearl of laughter, a dissonant yelp--that I will have every second of a lifetime to hold and value and treasure.

I have found that to be so true these past few months. Faced with Lily's death, I have held the lives of my loved ones that much tighter. I watched the video of little Eliot, 99 Balloons. After watching it, no one was home and Gabriel was sleeping. When he woke up, I cherished the play time we had together and sent a quick "thank you" up to God for my little boy and his big sisters. Here's that video. (Get a tissue before you watch it.)



I know my story has affected others in the same way that I have been affected. I've heard personal stories of how mothers have hugged their children a little tighter, thankful for their health, their lives, their laughter. Gift #1 from Lily.

Mistakes

Blogging isn't easy. It's usually late or I'm trying to write a few words while Dave is in the shower with Gabriel or the tv is on and I can't concentrate. Plus, it's writing. I used to teach English, and I know all about audience. I try to write with a perspective that leaves no question marks, but it's not easy.

I think I've concerned some of my readers, so I just wanted to take a few paragraphs and explain. In an earlier blog, I said that my prayers and wishes were not the same. I then said that "I just cannot pray for Lily to not have T-18." I should have elaborated. I do pray for her to not have T-18, but it's totally conditional. Here's how I explained it to a friend in an email:

"When I said that my prayers weren't for her healing, I meant that my prayers weren't like my wishes. My wishes are strong and full of such desire. My prayers are not the fervent, trusting, I-know-you-will-heal-her type. They are missing that desiring expectation. It's not that I don't have faith in God. Oh, I do. It's just I believe wholeheartedly in His will in this matter. Like I said in a previous blog, I know that I am exactly where I am supposed to be with Lily. Therefore, I believe that exactly what is supposed to happen, will. I believe that with all of my heart, and it is one thing that comforts me in this situation because it gives me a tremendous trust in God. Yet it drives me to find out why I'm in this situation. What is supposed to come out of this."

To give you a visual, I'm lifting Lily up, and I'm saying, "Here, God. Here she is. You know what is best for her, and I trust you for that." It leaves me struggling, though, which way would God rather it be? For us to totally trust Him with our situation or for us to trust that the situation will turn out the way we want it to, a way that brings His miracles to light. Really. I have no idea.

Break

I think I know why I had such strong wishes yesterday. Over the weekend, Dave, Gabriel, and I took a break from home and went to Ohio to celebrate Dave's brother's 40th birthday. Along the way, I don't know if I was in a daze or talking to Dave or playing with Gabriel, but it dawned on me that I was at this complete peace. For this short amount of time, I had let go of this weight I have been carrying. For this moment, it was like I had not only forgotten that Lily has T-18, I had forgotten that I was even pregnant.

It was such a release. I hate to say it, but it was, in its own sense, a break from the load I have been carrying for the past few months. It felt wonderful, but it was short-lived. It was the first time I have been able to let go like that.

As much as I probably needed that release, it's only made me crave normalcy. Usually, my rebellious soul bucks the normal, but not this time. This time, I'm wanting something I can't have. Wishing, you might say.

Wishes

I used to be a spoiled brat. That was a lifetime ago, when birthday candles and stars and four-leaf clovers actually promised something--Barbie dream houses or stereos or cars. Somewhere along the way, my wishes became less concrete and I lost control. Oh, please let that boy like me. Can our team have a winning season? I wish I would get that job. Eventually, we're not going to always get our way. Life has a funny way of preparing you for let downs.

I am at a point in my life where I don't wish for material things, but it surely would be nice if I could just close my eyes and blow out a candle, and I could get my way. Just this once. Please.

Of course, you know what I would be wishing for. I'll just go ahead and say it. I wish that Lily did not have Trisomy 18. I wish I wasn't faced with her potential death and the little things that go along with it, firsts. . .and lasts. They might be one and the same.

My wishes and my prayers are not the same, though. I just cannot pray for Lily to not have T-18, and I usually do not dwell on my wish for her to be "normal." But I have my moments. This is one of them.

Through all of this, I still thank God for all that I have been blessed with, and I believe with all of my heart that this is how it is supposed to be, that I am supposed to rise to this challenge. Some days it is easier said than done.

I think I'm just tired. Physically, mentally, emotionally tired. It's easy blowing out candles. It's easy looking out your window and reciting a few lines to a star. It's easy to sit in a patch of clovers and eventually find the one you're looking for. I'd love to say that the easy way isn't the way to grow a person. I know that's true, but tonight, I'd really like to be able to take the easy way and just close my eyes and make a wish.