Saturday, February 12, 2011

Sophia and Lily

As I've been blogging, I keep finding more and more blogs that I love reading. There are two blogs that I have been reading lately that have really impacted me and I thought I'd share them with you. They are both a bit heart-breaking as both of them have lost little ones in the past few weeks, so go on over and offer them a bit of your support.

The first blog, "The Dinkel Family", I found about a month or so ago. At the time, the couple were expecting their first child, a little girl Sophia diagnosed in the womb with Skeletal Dysplasia (the same diagnosis as Maddy). Towards the end of their pregnancy, the doctors told them that Sophia had a lethal form of Skeletal Dysplasia - and I was hoping and praying so hard that little Sophia would defeat the odds. I know MANY little babies with skeletal dysplasia who were given lethal diagnoses but when they were born, it was obvious that they would be able to survive. But this was not the case for Sophia. She was born and passed away soon after her delivery. This was my worst fear during my pregnancy with Maddy and reading Sophia's story has brought back some of our dark times but also reminded me of how blessed we are that Maddy has a non-lethal form. Please go over to the Dinkel's blog and give them a bit of love and support.

The second blog that has been impacting me lately is called "Booferd". This family has just lost their daughter, Lily, to the same chromosomal disorder that their eldest daughter had. The older sister, Charlotte, lived for nearly four years but Lily lived just a few months. One reason why this blog has really impacted me lately is because like this family, we have the possibility of our future children having the same condition that Maddy has. But unlike this family, the consequences of Maddy's disability are comparatively soooo small and insignificant. Yet for me, the decision to have more children is now a much more difficult one now that DD is in the picture.

Another reason that I love this family is because of Lily's name. Quoting from the blog, When we chose Lily's name it was to remind us that Lily was in God's hands and He would care for her, just as He clothes the lilies of the field. Again, this morning I was enjoying all the beautiful flowers--especially the Lilies we have received, and I thought that Heavenly Father doesn't let the lilies stay long on earth, but that doesn't make them any less special. In fact in some ways it makes them more special. He lets them bloom on earth for a short time and their beauty is not wasted. Lily's life was not wasted. Lily was worth it. 

Our girls both have similar names, their Chinese names were named after the same verse in the bible. Lana's Chinese name, "Si-Lan" literally means "Contemplating Orchids" (orchids are my favourite flower and were the flowers we used for my wedding bouquet, six years ago today!) and Maddy's name, "Si-Hei" means "Contemplating Buttercups" ("Hei" is also very similar to the Chinese word for "Hope", kind of like a "Hope flower"). They are based on the verse which says "Consider the lilies", and both of their names are a reminder to us of God's care and protection towards us, and how if He looks after the beautiful flowers, how much more so will He look after us! When we named Lana, I had no idea that our parenting journey would take us on such highs and lows, and just how deeply this scripture would speak to us. But through it all, I realise just how much He HAS been looking after us and how blessed we are to have two beautiful girls.

Please check out the blogs of Sophia and Lily's families and give them a bit of support during this difficult time. And while you're at it, remember to thank God for the ways He has blessed you and looked after you too :)


  1. Thank you so much for following our story and offering your prayers and support. thank you also for telling sophia's story, it means alot to me to know that other people thought of her and know her story. your little girls are so precious! i began following your story as a way to see other families living with children with Skeletal Dysplasia and making it work. your story with Maddy gave me hope that no matter what obstacles physically Sophia had that we could do it and take good care of her. God has blessed Maddy and Lana with a wonderful mommy. They are both so absolutely adorable and beautiful! i will continue to have your family in my prayers as well- for complete healing of Maddy! thank you- tristen dinkel

  2. happy wedding anniversary! Orchids are my favourite flowers too, and were in my wedding bouquet. I am thinking of you and Bernard as you approach the 1 year anniversary of Maddy's diagnosis. It is a very emotional and stressful time, but reflecting on the past year can also be healing. Every day I find at least one thing to be grateful for. And I realise how blessed I am to have what I have.

  3. I didn't know you were following us as I was following you! Thank you so much for sharing our story and for your kind words. Beautiful girls, beautiful names. I just read your post on exaggerating kids abilities and laughed, that is me with ella, and I had my special needs child first! (and last.) Thank you again.