Next to Normal

There have been many triggers in my life lately.  Hannah had an allergic reaction to her antibiotic.  Valentines and the super-bowl (which  both happened while my twins were in the NICU), ran into a friend who had twins at the same time as us (but hers both survived), many friends having babies, upcoming anniversaries.  I was so grateful that my support group met the other day so I could talk about all of this without fear, knowing they would understand the grief and pain these seemingly small events cause under my exterior togetherness.
Last night I went and saw a musical which that grief organization My Healing Place, invited us to.  It was about a woman whose baby died and triggered her into bi-polar disorder including delusions.  It was definitely a moving and effective piece with beautiful music.
I still can't decide if I'm really glad I went or not.  There were a few times where I almost lost it and started bawling uncontrollably.  However there was also much beauty and humor.  I often feel that "there but by the grace of God go I" in the sense that this character could have been me.  I could see myself spiraling that way.  Delusions can make the pain more bearable.
Some things I really related to were the feeling that you just remembered that your baby is dead.  They portray it very well.  The first part of the musical you think the son is alive- he is to the main character.  The way you suddenly find out that it's his birthday but he isnt there, is just how it feels when a birthday comes up.  It's as if you suddenly realize that because they are dead they won't be there this year either.  It was a very powerful moment.
Another thing that hit me was that they don't use the son's name.  The father won't say his name and we don't find it out until another beautiful moment when the father finally utters his name.  As you know, because of the title of this blog, this is a very important concept to me.  I can't imagine how much pain it would cause not to hear my baby's name for 18 years.
The hardest part of watching the play was that what happened to her makes great theater.  But it really happened to me.  All the actors got to go home and leave that terrible pain on the stage.  I took mine home with me.  Thier imaginary world which was a challenge and fascination to create is my actuality.
I used to tell myself "it's just a movie" if it was too sad or too violent.  But last night when I thought "It's just a play" so that I wouldn't start sobbing, I realized it wasn't  just a play to me.
I am glad I went.  I think I am going to buy the music because there were many songs that were so real and spoke to how I feel or have felt.  However it was hard. It wasn't a real loss but like a two way mirror, when I look at it I see my own loss.  And it's always hard to look your loss in the face.  Somehow hearing the words in music brings a small comfort that I am not alone in my pain.

Twin-less Twin Two Year Well Check Up

Many times when I take Hannah to the doctor I am taken back to a time when I was full of hope.  I had my tiny little Hannah home with me, and we talked to the doctor about bringing Samantha the next week. Bringing her back for checkups without Samantha was almost debilitating.  My feet were lead and I felt disconnected from reality.  What am I doing here with one baby?  One particularly difficult incident was seeing someone I recognized from the NICU.  her two little boys were across the room from my two little girls.  She had two car seats with her.  I had only one.
I can walk easily in now, I have been in many times since then.  But I cried bitterly in the car, wishing I had my two girls to celebrate.  I imagined how my double stroller would have helped me navigate the twin two year old girls through the parking lot and waiting room.  I imagined how I would have sit in grateful wonder at how my tiny preemies had grown.  I still sat in grateful wonder, but also in sorrow.

Missing my Samantha.  Grateful for each moment I got to spend with her, and get to spend with her sisters.

What a Blessing - I heard her name today

Today was Hannah's family birthday party.  I had such a lovely time, the truth is I had not really been feeling very sad although I did think about Samantha and how I missed her.  My father in law took some "Samantha" balloons to be filled with helium.  We had her lilies and her scrapbook displayed.  When we were opening presents I got a beautiful gift.

My brothers and sister and parents got Hannah a necklace with her initials on it.  They gave me one with Samantha's!  They wanted it to remind me that they have never forgotten her and never will.  My brother and sister in law to be also got us a beautiful Willow Remembrance ornament.  It was such a lovely gesture- and a card saying how they love me and think of Samantha.  I can't tell you what a blessing it was.

Then as I was cleaning up I found a card addressed to Samantha Lily.  It was from Hannah and Samantha's Godparents.  They just letting her know they celebrate her birth and always pray for her.  We are so blessed to have family that not only don't mind if we talk about our baby but also talk about her because they know I need to hear her name.  The day was definitely about Hannah.  But Samantha was right there with us in our hearts and minds.  

Actually this morning I started out feeling sad trying to decide if I would write about the day Samantha had surgery.  It's amazing that we got through all of that unscathed only to lose her weeks later.  However the rest of the day the joy of having Hannah and being surrounded by my family, filled my heart and mind.  It is such a pleasure to plan and throw a party like that so that my loved ones can all be together.  

I felt Samantha there with us in spirit.  I knew she was praying for all of us in the presence of God in total peace and joy.  I believe God answered her prayer for Him to send me comfort today through my family.

Remembering Samantha's First Transfer

The Transfer
Today I can't help thinking about the day Samantha was transfered.  I'll be honest.  I wasn't that scared.  I was in such a numb mode already from leaving my babies at the hospital when I was discharged the day before, that it hardly registered.  I was glad that my Dad went with me to the hospital to visit the babies, since he could help me stay sane and even thought to snap a few pictures.  When the doctor told me Samantha needed to be transfered, she touched my shoulder with compassion, but I just didn't feel anything.  Maybe I was just so optimistic that I couldn't let myself consider the worst.
http://losjuanhijos.blogspot.com/2010/02/baby-prayer-request.html
It made me feel a little better when they didn't immediately rush her to surgery.  I was assuming that meant there was still hope that everything was fine.  Having her at another hospital complicated things in a way I never could have imagined.  It was like having my heart stretched across the city.
http://losjuanhijos.blogspot.com/2010/02/samantha-at-st-davids-medical-center.html
I was so sleep deprived and uncomfortable.  I was functioning just enough to pump every three hours and be with my babies as much as possible.  I remember the first time I did kangaroo care I cried because Samantha was finally back where she belonged.  It was hard enough leaving her at RRMC just down the street and next to Hannah.  Leaving her at St. David's was even harder because we knew she wasn't doing well and they didn't know what was wrong.  Holding her was all I could do to help and I wished I could do it all day long, but I had two other daughters who needed me and I was recovering from surgery myself.
I have so many things I wish I had done.  I wish I 'd gained more weight when I was pregnant (to 32 weeks I had only gained 30 lb.)  I wish I had eaten more protein (I was counting grams of protein but only enough for one baby) I wish I hadn't gone to the gym that week before the babies came, I wish I hadn't taken any medicine for anything.
But since Hannah is healthy I can't assume that anything I did caused her condition.  It does make me crazy that she had intestinal problems then died of an intestinal disease and they couldn't give me any information about how they were related.  Surely that's not a coincidence.
Sometimes I look at pictures of Samantha and I can hardly believe she was real.  Other times when I remember these early days, I can't believe she isn't here.

The Hallway of Hope
There is a really amazing series of pictures in the hallway of St. David's Medical Center which leads to the level III NICU.  There are triplets and micro-preemies who are now healthy normal children enjoying life.  There are picture of children swimming, dressed up for Halloween and just playing on playgrounds.  These pictures gave me such hope.  I set my eyes on the future and held my breath until the moment I would have a complete heart again.
After Samantha passed away I often thought of that place and how I fantasized about Alexandra standing in the hallway, since children were not allowed even in the waiting room.  And I would bring Samantha out to meet her and she would squeal with delight and I would finally have my family together.  Now for me it was a hallway of lies instead of hope.  How could those pictures promise me a future?  How could they get my hopes up when in reality it was all still so fragile?
Now of course I realize that we need that hope.  And that it isn't a lie but hope is also not a promise.  It is only a possibility that we must believe in for life to be possible.

Breast milk Success
One thing I am grateful for and that went well was pumping milk.  From the moment the babies were born nurses were bringing a pump and waking me up to pump.  I have a pile of logs from when I recorded just about every ounce of milk I pumped.  I wish Samantha could have gotten some of the colostrum.  But we did everything we could to keep them supplied with plenty of mamas milk.  The hospitals and nurses made it about as easy as humanly possible.  And there were lactation consultants there to help every step of the way.  I was very anxious about getting the babies to nurse since they would be using a bottle first.  It was very confusing that they needed to use pacifiers to strengthen thier sucking and I was also worried about how to nurse them together eventually.  In the end they were both pretty good nursers and Hannah is still nursing before bed (okay, and when she wakes up too).

Today
David's grandparents are here for Hannah's birthday.  It is such a blessing to have them- but that also reminds me of then they came for the funeral.  I couldn't believe I only had one baby to introduce to them.  I knew she felt my pain because she had twins. I'm sure she couldn't imagine life without both her twins.
Hopefully Hannah's second birthday party will be a celebration of Hannah's life as well as acknowledgment of our never ending love for Samantha.

Happy Second Birthday Samantha!

We simply couldn't get Hannah to smile for the camera while at the cemetery.  We guessed that maybe she felt our grief and sadness as well as excitement being that she hardly slept 3-4 hours in a row the night before.  Two years ago I had two sweet little babies in the NICU.
http://losjuanhijos.blogspot.com/2010/01/babies.html

I held them for the first time two years ago yesterday.

 But today was a really special day because they were both awake and alert. (And I was a little more back to reality)

It was so amazing to see their little eyes and old thier hands and hear them cry- I just had a beautiful grace given to me- I found a video of Samantha crying and one of me holding her little hand- that I had never seen before. I found a few to pictures too that arent in her scrap book. (That will make a nice birthday gift.) If Samantha hadn't passed away I imagine I would have spent a fleeting moment or two at the wonder of how far my little girls had come. Now I can still be amazed at my little Hannah but I am just shocked still at the fact that the hopes and dreams I had this day would never come true.
I feel we sucessfully honored Samantha with a trip to the cemetery and a balloon release. I even got to share my scrapbook with a few friends. Some old ones that had just never seen it and some new ones that hadnt heard the whole story.
A friend of mine called to wish Hannah and Samantha a Happy Birthday. It was so nice to hear her name. I really wish she was here.
Happy Birthday, my little saint.