Our daughter, Lily Grace, was born to heaven on June 6, 2010. She was diagnosed with alobar holoprosencephaly (HPE) and a rare arrangment of trisomy 18 (isochrome 18q). To learn more about our experience, you may want to start at the beginning. Read Lily's Story: from Beginning to End, which is one of the first blog entries on June 24, 2010.


He heals the brokenhearted and binds up their wounds. Psalm 147:3

Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. 2 Corinthians 4:16-18

He will cover you with his feathers, and under his wings you will find refuge; his faithfulness will be your shield and rampart. Psalm 46:1


Thursday, May 24, 2012

Memorial Day Memories

So, the hardest part about waiting so long between posts is not knowing where to start. This week marks the 2nd anniversary of that life changing sonogram and diagnosis. This anniversary certainly stirs up all of those feelings of grief that really have never gone away, but were residing quietly in my memory and in my heart. I can so clearly remember the denial and shock that I felt those days leading up to Memorial Day weekend 2 years ago as the unbelievable medical facts and statistics were thrown at me. Looking back on that time, I can vividly remember my tears all the way home from the first sonogram, during which we didn't really learn anything, but I had a suspicion that things were not as they should have been. I remember avoiding the texts and calls from my family who were excitedly waiting to hear if we were team pink or team blue. I remember waiting for the phone to ring to hear some confirmation that things really were just fine, that our sonogram tech was just having an off day and overreacted. I remember the uncontrollable sobs that shook me to my core and scared my then less than 2 year old son when that call finally came. I remember him looking at me with such confusion and fear. I remember the drive to Annapolis less than 24 hours later. We got pulled over for speeding, and the officer made some joke about the beach being in the opposite direction implying that we were going the wrong way. My husband told him that we were headed to a doctor's appointment, and when the officer looked over to see my swollen belly with a tissue box in my lap, and a sea of wet tissues covering the floor of the car, he looked at us with pity and graciously let us go with a warning. How I wish we were headed to the beach that day to enjoy some fun in the sun without a care in the world. I remember preparing myself to hear that our baby girl had Down Syndrome, as if that would be the worst news ever. I remember meeting with the genetic specialist who had on a pretty necklace and was so calm and nice. I very clearly remember seeing the framed pictures of her two beautiful children on her desk, wondering what my two children would look like posed next to each other for a picture since my daughter might have Down Syndrome. I still didn't get it. My two children would never meet. I remember using the last tissue from her box to soak up my neverending tears. I felt like the walls of the room were closing in on me as I looked at charts of chromosomes that took me back to high school biology. I remember wondering if maybe this was all a mistake. Maybe they got me mixed up with someone else. When I was growing up, there was another child who shared my same first and last name and even the same middle initial. My mother told me that our medical information had gotten mixed up once as we both had the same pediatrician. I think one of us even got the wrong immunization one time as a result of the mix up. Maybe the same thing was happening here. Maybe there was another Wendy in the waiting room carrying a baby who seemed likely to have Trisomy 13 or 18 because my baby was supposed to have Down Syndrome, which at least was compatible with life. I was in such denial about the reality of our situation that I thought we would still be leaving the next day for a weekend family getaway full of laughs and happy memories. I think amid my shock, I even asked the genetic specialist if we could still go, like she was my mom and I needed permission. She was so sweet. She didn't look at me like I had lost my mind, which clearly, she could have. She gently reminded me of some of the reasons why that may not be a good idea as I was expected to have severe cramping and discomfort from the amnio and was instructed to not do a lot of walking. The other obvious reason to not go was that we were planning to go to Sesame Place, which naturally, would have been filled with beautiful happy children, babies, and possibly, pregnant women. That would have been like torturing myself. Needless to say, we postponed our trip. I spent the weekend flooding myself with information, reading websites and blogs, emailing other Trisomy moms, crying more than I have ever cried, and waiting.... It's kind of crazy how vivid these memories and feelings still are 2 years later. Last year we planted Lily's memorial garden over the Memorial Day weekend. It's neat to see how her garden has grown and evolved over the last year. Some things have grown so much that I want to move a couple of things around and divide some plants that have really taken off. I'll probably spend some time doing that this weekend in preparation for her "birthday party". Last year, we celebrated Lily by hosting a balloon release and having birthday cake outside by her garden on June 6, the one year anniversary. It was a very touching evening for us. This is something we plan on doing each year. All three of our children have been born within 1 month of each other, so we are planning to spend some time this weekend preparing to celebrate each of them on their birthdays. Lily's birthday kicks off the summer birthday celebrations- we will celebrate her for the second year on June 6, our youngest, Ainsley, for the first year on June 18, and their older brother, Owen, for the fourth year on July 3. Just like most mothers, as we celebrate, I will be reminded of each of their birth stories as well as the precious time spent with each of them in my womb leading up to the first time I laid my eyes on them and held them in my arms, on the days of their births.

2 comments:

  1. Hi there, I landed on your blog after I googled for info on Holoprosencephaly..

    Actually my son was also diagnosed with HPE when I was pregnant to him.

    My prayer goes to all HPE children..

    ReplyDelete
  2. Thank you so much! I will pray for you and your son as well!!

    ReplyDelete