We Need A Little Help Over Here!

                                     

Last year, around this time, my father-in-law said that this year, we needed to get a Christmas Tree for Rachel.  His reasoning was since we would have a baby around, we needed a tree for the baby.  This puzzled Ping a bit because he never had a tree growing up.  I think they were encouraging us to start our own traditions since we would have our own family.  I, obviously, would love a tree as I grew up with one.  But, Rachel is not here.  It would be a nice thing to do for her in her memory, but there are a few practicalities we need to work out.  I thought maybe you could help us. 

1) where would we put the tree? (Obviously only those that have been to our place would know this)

2) should we get a fake or live tree? (remember, fake means storage space….which we pretty much don’t have)

3) How should we decorate it? We have no ornaments or lights, so we would have to buy these things. Since this year’s tree would be a thing for Rachel, is there a special way we should decorate it?

4) How big of tree should we get?  What is manageable for a NY apartment?

5) Since Ping’s parents just moved to China yesterday (yes yesterday) and Ping’s brother will be in Atlanta with his Fiancée for Christmas, it is just Ping and I.  What should we do for Christmas?  (Sorry, we will NOT be flying to Seattle.)

Takin' It Easy

It's been a few months since I've given an update.  The summer has been very busy and thus has flown by.  I can't believe that next week will be September already!  Aside from me working at Boon's Summer Camp this summer, Ping and I have tried to get out more.  We saw 2 movies: Twilight: Eclipse, and Inception.  I would highly recommend inception.  Ping would recommend both.  We also spent a weekend on the upper westside visiting Harlem and The Cloisters.  It was quite a trek due to some trains not running, but we made it.  Our first stop was in Harlem for lunch at the famous Amy Ruth's restaurant.  Good ole soul food straight up.  They are famous for their waffles paired with a fried meat dish.  They also have good mac and cheese (from what I hear).  Let me tell you, Amy Ruth's has THE BEST Belgian waffle I have EVER tasted! It was lightly crisp on the outside and immediately melted upon entering your mouth. Mmmmm....I'm salivating just typing about it!  Paired with our waffles, Ping ordered the fried chicken wings.  Very delicious.  Since I had been to Rosco's Chicken and Waffle house in L.A., I decided to try the fried shrimp with my waffle.  Very good, but not as good as the chicken. 

After lunch, we headed up to The Cloisters.  The Cloisters is a part of the Metropolitan Museum of Art that features medieval European art.  Now, Ping and I both are not art savy, nor are we the type to stand in front of an object, ooh and awe over it and try to interpret what the artist wanted to tell us.  The museum was beautiful I have to say, mostly because of the building it was located in had incorporated elements of the French cloisters and from monastic sites in southern France.  The Cloisters is located in beautiful Fort Tyron Park.  Fort Tyron is composted of quiet lawn areas, pathways, stairways and floral gardens.  All overlooking the Hudson River.  I have added some pictures in my album for you to see.  Enjoy!

Brooklyn Half Marathon

It's been quite a while since I've posted here.  I feel like my life have been strangely busy this past month and with VBS/Summer Camp coming up, it's not going to slow down.  May 22nd, I ran the Brooklyn Half Marathon.  This race felt a little different compared to the last two years I've ran it.  The crowd was a tad smaller due to some, ahem, poor registration execution on the organizer's part.  My parents were in town and they had the opportunity to watch my race for the first time.  This gave Ping the excuse to come watch as well!  My parents flew in the early evening prior.  We headed straight from the airport to the baseball game (Subway series: Mets v. Yankees) and decided to have dinner at the ballpark.  We chose to have crab cakes and french fries.  I could have played it safe and gone for pizza, but the crab cakes looked SO good!  The fries were doused in this creole seasoning which was overpowering without dipping them into the cheese sauce that came with it.   Mets lost, Yankees won and we headed home.  With just under 5 hours of sleep, My parents, Ping and I headed out to the start.  Ping dropped us off at Prospect Park and continued out to the finish at Coney Island and waited for us there.  The weather was nice...mid 60s and partly cloudy.  I took my GU with a few other people near a water fountain and trash can on my way to the start corral.  I lined up, said good-bye to Mom and Dad and was ready.  I was a little emotional because the last time that I ran in Prospect Park, I was pregnant with Rachel.  The gun went off and it took only a minute for me to get to the start line.  We did 2 full loops (first 7 miles) of the park which meant climbing a large hill twice.  I saw Mom and Dad twice in the park and planned to see them at the finish line.  I felt really strong and my pace was always between a 8:30-8:45 in the park.  I started to get a little worried around mile 6 because if I was going fast now, I would crash on the parkway.  We exited the park and onto the parkway.  There was water and Gatorade every stop (unlike most NYRR races) and this year, they were well stocked and manned.  I took my first GU at mile 6.  The parkway was nice an flat, slight downhill too.  It was still mostly cloudy so I didn't get to have to fight for limited shade on the parkway.  The miles just flew by.  Around mile 10, I was starting to feel the need to use the restroom.  There was no toilet around and felt I could still hold it.  However, just at mile 11, I felt a gas bubble come through. Along with the gas, came a little liquid form of poo.  OMG!  I was so embarrassed!  I've NEVER crapped myself on a run before!!  I guess you could say I am a hard core runner now. haha.  I thought for a second as I saw a porta john there if I should go or just book it to the end.  I felt more coming and ended up choosing the toilet rather than greatly defecate all over myself.  Thank god there was one open and I forced it all out to cut down on time.  I felt better now that I was empty, and booked it out of the toilet, jumped the guard rail and back onto the course.  I decided to run the last 2.1 miles like a 5K so I could make up for the lost time.  I was really pushing it.  I crossed the finish line in 1:56:33!  Not a PR (1:55:47), but a sub-2 which is what I wanted!  Ping was there at the finish line and my parents missed me as the train took longer than expected.  I ended up having a huge streak of the runs.  I went another 6 or 7 times in the next few hours!  I later figured out that you should NEVER mix Gatorade and GU or any other energy gel.  Oops!  Lesson learned!  Here is a picture of me finishing my second loop of the Park.  You can see more pictures here.

The Day We All Said, "Good-Bye"

It felt strange walking back from the funeral home on Thursday.  Here I had my daughter in a box inside a brown paper bag, all the while other women on the street had their children in a stroller.  I entered the apartment and didn't quite know where to put Rachel.  Should I put her in what was supposed to be her bedroom?  No, it's filled with boxes and I don't want her to be amongst boxes.  Should I put her on the coffee table? No, it would be weird to eat dinner and stare at her remains.  Maybe the kitchen.  I could show her how to cook.  Okay, that is kind of morbid.  The desk is too cluttered with Ping's exam material, and our bedroom seemed kind of weird.  I decided to place Rachel on the AC unit next to her memory box.  (There's no room on the window sill next to it).  There she sat, for 2 days.

Friday, I had a meltdown in anticipation of the next day.  There were things I wanted to do or say and Ping didn't agree with my ideas.  I took the day off of work as I couldn't compose myself in time to teach the roudy kids.

Saturday, May 1st, we planned to scatter Rachel's ashes at the Lake in Central Park.  I got up early to go for a run.  Today ended up being the Virtual Critter 5K. (I will save this race report for another post in a few days)  It was warm and sunny today and it felt good to burn some left over steam from yesterday.  The high was in the mid 80s which meant that by the time we reached Central Park, it was littered with tourists.  We even had to fight through the tour groups entering the park. (Apparently the W 72nd Ave entrance is popular) Peter, Arianne (Pete's girlfriend), my father and mother in law, Ping and I circled about 3/4 or the lake before we found a somewhat secluded area to hold our mini "ceremony."  I took Rachel out of my purse (again, felt odd carrying her there with so many other kids in strollers), and we each took turns placing them in the lake.  The only outside party member that watched and stared the entire time was a turtle.  I'm sure he/she didn't mind as long as we didn't disturb it from sun bathing. 

 Next, we each wrote a note to Rachel on a pink balloon before sending them off into the sky.  There were moments where I felt my eyes well up with tears, but overall, it was a healing experience for us. 

Psychologists say that the worst loss anyone can experience is the loss of their own child.  Studies show that the depth of the grieve one person goes through does not vary in intensity regardless of the age of the child.  Grieving can take just a short time (like it has for Ping), months or years for some.  Through my support group at the hospital, I've seen the steps I've taken in my grief and am glad that I am progressing, but I also know that I am no where near the end of this grieving process.  I have learned that I can't push it, deny it, or erase it.  All I can do is, like a disease infiltrating the body,  just let it run its course.

Good-Bye Rachel.  You will always be loved and missed.  And you will never be forgotten.

I'm back in the Saddle Again!

No!  I'm not trying to have another baby right now!  Are you crazy!?!  I lost Rachel only 3 months ago!  I'm talking about racing.  Last Saturday, April 17th, I rant he Garden City Race for a Cure 5K.  It was such a different feel from all the other races I've done in NYC.  This was my first small town race and non-NYRR race (not counting the World Vision 5K).  It was so nice to wake up at 7am (instead of 5am), get in my car (instead of walk to the subway) and drive for 35 minutes (instead of ride the train for 1-2 hours) to run for under half an hour.  In January, I made a goal for myself to run more non-NYRR races (in NYC that means, races in Long Island).  I was getting tired of the large crowds (2,000-5,000) and wanted to experience a more small town, local feel.  Besides the moments of disorganization from the race directors, I had so much fun, I even stayed to watch the awards ceremony! I've never done that with NYRR!  There were just under 300 runners.  The course was flat and fast and I was excited to actually race a race (something I hadn't done in almost a year).  Mile 1 was great....had a medium to difficult effort.  My split was shouted out by someone on the street with a stopwatch, "7:34!"  Mile 2 was tougher, I was trying to keep my pace and started to feel fatigue set in.  I was doubting if I could keep up this pace, but quickly erased from my mind and kept pushing it harder.  The split times via stopwatch at Mile 2 was, "13:33!"  Could that really be?  I did a 6 minute mile?  That's got to be off.    I round a few more corners pushing harder to keep my pace up.  I reached the final stretch of the course, could see the finish line in the distance and felt the wind start to blow against me.  I pushed even harder to fight it.  I'm sure glad that the last mile of my training route is uphill against the wind.  That practice paid off!  I crossed the finish line in 20:26.  What that heck!?!  That's not possible!  I soon found out that the course was changed last minute and ended up being short (2.8 miles instead of 3.1).  When results were posted I was really proud of myself!  I finished 89th overall and 6th in my age group!  I did the math afterward to determine was my time would be at the actual 5K distance: 22:25.  A new PR!  I'm back!

Genetic Jargon

Yesterday was a day of peace for us.  Dr. Bialer, our Geneticist, called with the results on the "Lee Family genes."  Dr. Bialer was able to confirm that Rachel did in fact have Uni-parental Disomy, paternal, 14 (pat UPD 14).  What does this mean?  It means that Rachel received 2 #14 chromosomes for Ping and none from me.  Research suggests that what initially happens is that a trisomy occurs (2 chromosomes of Ping's and one of mine), the embryo tries to correct itself, but ends up getting rid of the wrong chromosome, thus ending up with both of Ping's and none of mine.  Pat UPD 14 is extremely rare, there are only about a dozen recorded cases in the world.  Most of these cases are translocation or mosaic UPD14.  This means that the broken chromosome has reattached to another chromosome such as #13 or #15.  We know that Rachel did not have translocation or mosaic as her chromosome count was normal.  This makes her case even more rare.  We were told that UPD14 does have a high miscarriage rate. However, Dr. Bialer cannot confirm that this was the cause of my preterm labor.  We have to take into account that her heart muscles were week and her kidneys stopped working.  Why?  We will never know the answer to that.  The good news....the recurrence rate for UPD 14 is extremely low.  Our chances of conceiving another child with this genetic disorder is slim to none.  This statistic doesn't put my heart at ease though.  The rare happened to us, and that makes the rare a reality.

More Photos

Just to let you all know, I added more photos to my album from the race.  The photos are courtesy of Jennifer Chung, Sunny's mom.  Thank you Jennifer!  You can view them by clicking on "view my gallery" to the right.

World Vision 13.1 Race

Yesterday, I took part in the Inaugural 13.1 Marathon and 5K benefiting World Vision.  It took place in Flushing Meadows Corona Park- a nice flat and fast course.  Due to my previous heel injury, I dropped from the half marathon to the 5K  Sunny, who is in middle school from church, and Stan signed up for the 5K as well.  This was Sunny's first race. Sunny just started running and had not trained well.  We walked a majority of the race. Per doctor's orders, I was not allowed to run the race for time, so I stuck with her to keep her company.  Kat, Philip, Tracy and Veronica all ran the half marathon.  This was Philip and Veronica's first attempts at this distance.  The weather was nice and sunny. Audrey, a friend of mine ran the half with my timing chip (I was not able to use it in the 5K) and got me a PR of 1:51!  I really hope I can run that time someday soon.  Audrey wore her shirt in memorial of Liz Duncan.  Liz is a friend of ours who was struck by a car and killed while running in April of 2007.  Liz's memorial race took place yesterday as well in Washington State. Ellen ran the half marathon too.  She finished with a PR of 2:06!  Ellen, her boyfriend Charlie, Ping and I all got together afterward for lunch.  Given it's first year of this race, it was well organized and I would definitely do it again.  Here is a picture of Stan, Veronica, Sunny and Philip before the start.  You can view more pictures here.

Tips

I read a helpful message back in January when Rachel first passed:

When women experience the loss of a child, one of the first things they discover they have in common is a list of things they wish no one had ever said to them. The lists tend to be remarkably similar. The comments are rarely malicious - just misguided attempts to soothe.

This list was compiled as a way of helping other people understand pregnancy loss. While generated by mothers for mothers, it may also apply similarly to the fathers who have endured this loss.
When trying to help a woman who has lost a baby, the best rule of thumb is a matter of manners: don't offer your personal opinion of her life, her choices, her prospects for children. No woman is looking to poll her acquaintances for their opinions on why it happened or how she should cope.

-Don't say, "It's God's Will." Even if we are members of the same congregation, unless you are a cleric AND I am seeking your spiritual counseling, please don't presume to tell me what God wants for me. Besides, many terrible things are God's Will, that doesn't make them less terrible.

-Don't say, "It was for the best - there was probably something wrong with your baby." The fact that something was wrong with the baby is what is making me so sad. My poor baby never had a chance. Please don't try to comfort me by pointing that out.

-Don't say, "You can always have another one." This baby was never disposable. If had been given the choice between loosing this child or stabbing my eye out with a fork, I would have said, "Where's the fork?" I would have died for this baby, just as you would die for your children.

-Don't say, "Be grateful for the children you have." If your mother died in a terrible wreck and you grieved, would that make you less grateful to have your father?

-Don't say, "Thank God you lost the baby before you really loved it." I loved my daughter. Whether I lost the baby after two weeks of pregnancy or just after birth, I loved him or her.

-Don't say, "Isn't it time you got over this and moved on?" It's not something I enjoy, being grief-stricken. I wish it had never happened. But it did and it's a part of me forever. The grief will ease on its own timeline, not mine - or yours.

-Don't say, "Now you have an angel watching over you." I didn't want her to be my angel. I wanted her to bury me in my old age.

-Don't say, "I understand how you feel." Unless you've lost a child, you really don't understand how I feel. And even if you have lost a child, everyone experiences grief differently.

-Don't tell me horror stories of your neighbor or cousin or mother who had it worse. The last thing I need to hear right now is that it is possible to have this happen six times, or that I could carry until two days before my due-date and labor 20 hours for a dead baby. These stories frighten and horrify me and leave me up at night weeping in despair. Even if they have a happy ending, do not share these stories with me.

-Don't pretend it didn't happen and don't change the subject when I bring it up. If I say, "Before the baby died..." or "when I was pregnant..." don't get scared. If I'm talking about it, it means I want to. Let me. Pretending it didn't happen will only make me feel utterly alone.

- Don't say, "It's not your fault." It may not have been my fault, but it was my responsibility and I failed. The fact that I never stood a chance of succeeding only makes me feel worse. This tiny little being depended upon me to bring her safely into the world and I couldn't do it. I was supposed to care for her for a lifetime, but I couldn't even give her a childhood. I am so angry at my body and my actions you just can't imagine.

-Don't say, "Well, you weren't too sure about this baby, anyway." I already feel so guilty about ever having complained about morning sickness, or a child I wasn't prepared for, or another mouth to feed that we couldn't afford. I already fear that this baby died because I didn't take the vitamins, or drank too much coffee, or had alcohol in the first few weeks when I didn't know I was pregnant. I hate myself for any minute that I had reservations about this baby. Being unsure of my pregnancy isn't the same as wanting my child to die - I never would have chosen for this to happen.

-Do say, "I am so sorry." That's enough. You don't need to be eloquent. Say it and mean it and it will matter.

-Do say, "You're going to be wonderful parents some day," or "You're wonderful parents and that baby was lucky to have you." We both need to hear that.

-Do send flowers or a kind note - every one I receive makes me feel as though my baby was loved. Don't resent it if I don't respond. 
 
-Don't call more than once and don't be angry if the machine is on and I don't return your call. If we're close friends and I am not responding to your attempts to help me, please don't resent that, either. Help me by not needing anything from me for a while. 
 

If you're my boss or my co-worker: 

-Do recognize that I have suffered a death in my family - not a medical condition. 

-Do recognize that in addition to the physical after effects I may experience, I'm going to be grieving for quite some time. Please treat me as you would any person who has endured the tragic death of a loved one - I need time and space.

-DO understand if I do not attend baby showers/christening/birthday parties etc. And DON'T ask why I can't come. 

Please don't bring your baby or toddler into the workplace. If your niece is pregnant, or your daughter just had a baby, please don't share that with me right now. It's not that I can't be happy for anyone else, it's that every smiling, cooing baby, every glowing new mother makes me ache so deep in my heart I can barely stand it. I may look okay to you, but there's a good chance that I'm still crying every day. It may be weeks before I can go a whole hour without thinking about it. You'll know when I'm ready - I'll be the one to say, "Did your daughter have her baby?" or, "How is that precious little boy of yours? I haven't seen him around the office in a while." 


Do NOT say, "Please allow yourself time to grieve." Every time I speak in sadness about my daughter.  What does that really mean anyway?!?  You want me to go and hide until I'm all better?!?  All I need is an ear to hear, nothing else. 

Above all, please remember that this is the worst thing that ever happened to me. The word "miscarriage" is small and easy. But my baby's death is monolithic and awful. It's going to take me a while to figure out how to live with it. Bear with me.

They Say Running is Therapeutic.....

I agree tremendously!  During the month of January while I was recovering from my surgery, I couldn't wait to bust out and start running again.  The last day I ran was Christmas morning with Rachel.  That first run February 3rd was such a great moment and humbling too!  In just 5 weeks, I had gone from waddling pretty well 3 miles a day to barely being able to run 3 blocks!  This is horrible! I thought. I signed up for a half marathon that is in 8 weeks and I can't even run a 1/2 mile! I decided I would get my butt in gear and ramp up my mileage so I would be in shape for this next race.  Running also gave me an outlet to escape from this world.  All that came crashing down about 3 weeks ago when I finished a 7 mile run.  My heel hurt.  I had a day of rest the next day and would run again on Monday so I didn't think anything of it.  But when Monday came, my 3 mile run was extremely painful.  That's when it hit me....I had my first running injury.  I was angry to have to take some time off.  Our stationary bike at home helped substitute my cardio, but every runner will tell you that a bike just doesn't do it for a runner when needing to exercise. I tested my heel a week later with a 3 mile run, but the pain was still there.  Even walking was painful.  I decided to see a sports medicine doc.  I made an appointment for the following week.  Meanwhile, I kept biking until, a week ago, my darn bike BROKE!  Now I was really devastated!  What was I supposed to do for cardio!  I'm addicted to cardio!  Finally, Wednesday comes around and I see my doc.  A very easy run/walk the morning prior showed me that I was pain free, but I wanted to make sure nothing was still wrong before I really got back into running.  Dr. King was amazing.  He check not only my feet but my legs, knees, hips and back.  Since I was pain free he cleared me to run....SLOWLY  recover.  So what happened that made me get injured?  I did too much too fast.  The simplest rule a runner is NEVER supposed to break.  I did it because it was my escape, it felt good and helped me get through my day.  Yes, running IS my therapy.

Back to the Beginning

We got the complete autopsy results yesterday and it showed nothing more than the fact that Rachel died due to complications of her condition. Neither us or Dr. Koppell had heard from UCLA yet so he called them since it had been 8 weeks. Apparently their results were in the mail so he had them fax a copy to him. He called in the afternoon with their report. UCLA's Cedar Sinai has a preliminary diagnosis of Uniparental Disomy 14 (UPD 14). They want tissue samples sent to them to confirm the diagnosis. I thought tissues had already been sent when she passed, but apparently it was just her x-rays. Ironically, it seems that UPD 14 has pretty much the same presentation at Jeune's Syndrome, small rib cage, widened iliac bone and short limbs.   The only thing I haven't been able to see about UPD 14 is Kidney problems, which Rachel had at birth. She also didn't show a short stature which UPD 14 can show, she just had short limbs.  She also didn't have any cranial abnormalities in her bones nor did she have any hernias which is consistent with UPD 14.  I know in the end it doesn't matter what she had because it doesn't change the fact that she is not here anymore, but I am bothered by this possible diagnosis, I guess it just puts me back at square one with everything.

It took me a while to write this...

I can't rewrite this again, so I just copied and pasted it (I wrote it shortly after all events took place):
I gave birth to little Rachel Grace on 1/3/10 at 25 weeks gestation.  Rachel was diagnosed after birth with Jeune's Syndrome.  A rare genetic disorder (affects 1:130,000 live births a year) that affects the long bones, especially the rib cage.  Rachel was in the NICU and passed away on 1/5/10.  This is the hardest thing in life that I have ever had to endure.  I miss Rachel so much.  I wasn't ready to see her yet, and when I did I wasn't ready to let her go.  We moved to a new apartment 4 days before she was born.  The reason why we moved, so Rachel could have her own room.  I look at the empty room and just don't want to live here anymore.  Too bad we are stuck in a lease.  We chose this place specifically for her...the room, the washer/dryer in the unit (Difficult to find in NYC), the large roof top terrace for her to play on in the summer/warm days.  Now, you walk in, our place smells like a flower shop, a huge pile of cards sit next the flowers that all are riddled with "we're sorry for your loss" and random bible verses that are supposed to give you strength in times of trial. Those words in the Bible right now, make me angry and don't give me comfort.  My faith in God has been totally dumped upside down.  Rachel got her first piece of mail- her social security card.  I had no idea what to do with it.  It was totally weird to see her name printed on an envelope.  Rachel's memory box given to us by the NICU sits amongst the flowers.  All I want to do is stare at it all day.  I wake up every morning and wonder what am I supposed to do now?  How am I supposed to go on in life when I've spent the last 6 months preparing for our daughter to join us 3 months from now?  I dread facing the world- going back to work, answering questions from my students who loved Rachel just as much as Ping and I.  I also think,  What can I do to raise awareness regarding Jeune's Syndrome?  A few of my friends did donate in Rachel's name to the tiny foundation that exists.  My older sister is doing a book drive for the NICU that Rachel stayed at since when I was there I was not allowed to hold her (until she passed away in my arms) and they only had 3 children's books for me to read to her (which they had to spend a few hours hunting down).  A strong part of me wants to get pregnant again right away, but I know that part is just trying to fill the void.  I feel like I have lost the purpose in my life.  How do I go one from here?  How do I heal.  I'm not crying as much anymore, about every few days.  I blame myself for Rachel's death.  I keep thinking, if I had just been more in tune with my body, called the doctor about the UPPER back pain I had a few days before, Rachel would still be with us.  Everyone is telling me that it's not my fault.  My doctor even says it's not.  "That back pain I would have never pegged as labor, your cervix and uterus were just fine.  It wasn't you that brought her here early."  I still blame myself though.  I know that if she had made it through she would have had 30+ surgeries ahead of her in life, one every 4-6 months to expand her tiny rib cage.  And even then her potential of living until adulthood is grim.  On top of that, the bleeding in the brain, who knows how that would have affected her quality of life.  All I want is my baby back and that none of this ever happened.  Here is a picture of our sweet Rachel as she passed away in my arms.