I came across a shared photo on my Facebook Newsfeed a few weeks ago. A mother who had suffered many losses had written a poem that spoke to me. ( I would post the link, but it seems to have disappeared.) I resonated with her 100%. As the anniversary of Rachel’s birth and passing quickly approach next week, this month, just like every December for the past 4 years, is a nervous wreck for me. Filled with anxiety, depression and post traumatic stress, I find it really hard to function normally and happily for my family. I want to spend December and January curled up in a hole, hidden from the world and from the reality of my life- the one reality I hate the most- I have a child in heaven that I will never see growing up.
Reading this woman’s poem really helped me remember the things I’ve been through and how far I’ve come in my grief process. It has motivated me to write my own rendition of her poem in hopes that I can have a good day today.
Here is my story:
I am strong because in August of 2009, my husband and I found out we were pregnant for the first time.
I am strong because I was determined to keep my exercise level up as much as possible during that pregnancy. (ran 2 half marathons and a 4 mile race)
I am strong because in late September, we heard that our baby had a 1/24 chance of having Down’s Syndrome.
I am strong because through much encouragement from my OB, we decided not to do an amnio for confirmation and carry this baby to term, no matter it’s condition.
I am strong because in mid October, we found out we were having a girl.
I am strong because in mid-November 2009, we found out our daughter showed some markers for Down’s Syndrome and got confirmation that we would be having a child with special needs.
I am strong because even though my OB again strongly expressed the importance of an amnio because I still had the opportunity to abort her, we decided to continue with our pregnancy.
I am strong because at 22 weeks, I ran (jogged) my last race with our daughter in my belly.
I am strong because at 23 weeks I felt decreased movement, but was assured that frequency of movement wasn’t important at this stage.
I am strong because at 24 weeks, I spend Christmas day moving boxes and cleaning our new apartment to begin preparing for our daughter’s arrival in the next few months.
I am strong because on December 26, 2009, I booked a plane ticket to fly home for my baby shower.
I am strong because on December 31, 2009, I woke up with back pain on my right side, thinking I had pulled a muscle while moving.
I am strong because on that same day, I walked 2 miles in a snow storm to return the keys to our old apartment.( The buses were not running)
I am strong because on January 1, 2010, I called my OB to get some muscle relaxers for my back pain.
I am strong because the call service refused to let me talk to my OB because I was sure I wasn’t in labor.
I am strong because at 25 weeks, I never once thought I was in labor, that I just pulled a muscle.
I am strong because on January 2nd, 2010, I started feeling a tad better and decided not to visit my OB in his office.
I am strong because on January 3rd, 2010, I woke up with my back pain virtually gone and headed off to church on only 1 hour of sleep.
I am strong because on January 3rd, 2010, just before church service was to begin, I made my usual trip to the restroom.
I am strong because once I sat down to pee, I felt a pop and realized my water had broken.
I am strong because my best friend, an OBGYN, was there with me to help me make fast and quick decisions.
I am strong because upon arriving at the hospital, our daughter was breech, heart rate decelerating, and halfway down my birth canal. A emergency c-section was declared.
I am strong because the last moments I remember before being put to sleep was screaming for my husband and him not being able to join me in the OR.
I am strong because on January 3rd, at 12:50pm, Rachel Grace Lee was born at 25 weeks, 2 days.
I am strong because we were assured Rachel did not have Down Syndrome and that she was doing well, just a little bruised on her legs from being in my birth canal.
I am strong because in the next 48 hours, Rachel went from strong and healthy to experiencing cardiac arrest 3 times.
I am strong because Rachel was given another diagnosis: Juene’s Syndrome.
I am strong because for us, that meant we had a 25% chance of having a child with this disorder each time we get pregnant.
I am strong because on the evening of January 4th, we were told Rachel had significant bleeding in the brain and her prognosis for life was grim.
I am strong because on that same evening, my husband and I decided to sign a DNR order for Rachel.
I am strong because on the morning of January 5th, 2010, the nurse caring for Rachel informed me that she found a minute amount of urine in Rachel’s diaper. (her kidneys were not functioning at birth so this was a great sign of progress)
I am strong because at 12:30pm, I decided to leave Rachel’s side to each lunch in my room with our pastor.
I am strong because at 12:40pm, I received a call from the NICU that we were needed immediately.
I am strong because upon arrival, I saw all shaded drawn, and visiting parents standing in the hallway.
I am strong because upon being wheeled into Rachel’s room, I witnessed the nurses swaddling Rachel’s tiny body, and turning her machines off.
I am strong because as I held my first born for the first time, her heartbeat slowly came to a stop.
I am strong because some how, I have been able to function since that traumatic day.
I am strong because 3 months later, we received word that Rachel did not have Juene’s Syndrome, but Paternal Uni-parental Disomy #14. Meaning her condition was completely random and rare.
I am strong because in early August 2010, I found out I was pregnant again and suffered a miscarriage a week later.
I am strong because on September 1st, 2010, I found out I was pregnant for the third time, and felt numb, disconnected, and sure this one was not going to work out either.
I am strong because at 15 weeks, I was having some bleeding and cramping. After an ER visit, we found our baby to be fine.
I am strong because at 17 weeks, I started experiencing the exact same back pain I had with Rachel. I was sure I was in labor. Another visit to the ER confirmed I had in fact just pulled a muscle.
I am strong because in mid December, we found out everything was normal with our baby and we were having another girl.
I am strong because I refused to have a baby shower until after our baby was born and home from the hospital.
I am strong because everyday of my pregnancy, I was convinced it would be the last.
I am strong because at 24.5 weeks, I started feeling some back pain again. My OB allowed me to come in and assured me I was fine. Upon the anxiety of my pregnancy, she allowed me to come on a weekly basis for assurance and close monitoring.
I am strong because at 27 weeks, upon a routine OB appointment, we found out I was having contractions every two minutes (I could feel them) and were sent directly to labor and delivery.
I am strong because the next 3 days were spend in the hospital after a shot to stop my contractions and steroid shots were given in case our daughter decided to arrive.
I am strong because the next 10 weeks consisted of bed rest.
I am strong because at 31 weeks, I was having contractions again.
I am strong because at 36 weeks, we welcomed the arrival of our daughter, Erin Rachel, during a planned c-section.
I am strong because I a few days post partum, I became very depressed and was eventually diagnosed with post partum depression.
I am strong because although I felt I didn’t have a right to have PPD since I had lost a child before, I learned to own my feelings and deal with them in a mature way over the next year and a half.
I am strong because each December, my depression returns for a time, until a few weeks after Rachel’s anniversary.
I am strong because 2 years ago, I decided to start volunteering for a pregnancy loss support program through the National Council of Jewish Women.
I am strong because once a month, I listen and help women on the phone cope with the recent loss of their own child.
I am strong because through my client’s tears and my own, I am able to give her hope and comfort in the newness of her loss and use my story to encourage others.