Wednesday, June 19, 2013

Holding onto Hope - again

In this pregnancy, although Bernard and I had come to accept the possibility of having another baby with dwarfism, we were of course hoping that this child would not have dwarfism. For one, having a baby with dwarfism is a lot of extra work. Doctors visits. Therapists. Working a lot harder to do things that come naturally for other kids. Secondly, dwarfism (particularly diastrophic dysplasia) is debilitating. While people with this condition are usually mobile to some extent, they have restrictions on that mobility. They can't walk as fast or as far, and mobility can decrease as they age. Thirdly, particularly with this condition, people often suffer from chronic pain as their joints deteriorate. In many ways, this is the worst thing about diastrophic dwarfism. And who would want to choose that, if we could pick? Finally, for myself, I thought that after the trauma of the last pregnancy, having a "normal" pregnancy would be healing for me. I never appreciated so many things with Lana. I didn't appreciate being able to breastfeed. Or to bring her home from the hospital with me. Or being able to do whatever we wanted without multiple appointments a week throughout her first year. I was wanting to have another "run-of-the-mill" baby that I could really appreciate every single thing that we missed with Maddy. 

On the other hand, I've recognised that so many positives have come into our lives because of Maddy's dwarfism, and that although we didn't choose it, it is a part of who Maddy is and I wouldn't change her for the world. I also know that there could be benefits for Maddy in having a sibling with the same condition as her - camaraderie, support, understanding... things that we as "average height" parents cannot fully give her in the same way that someone who shares a diagnosis can give her. 

Despite all of that, I have not prayed for "my will" to be done. Just like the gender of children is (usually) out of the parents' control, so it was in our situation. And I've prayed that God will complete our family (as this will likely be our last child) with the child that He knows is right for us. 

This week, we found out that our third (probably) daughter also has diastrophic dysplasia.

There are mixed emotions of course - Disappointment? a little. Fear? not really. Acceptance? a lot. 

Is there a chance that the doctors are wrong? Simply - no. The limbs are already off the charts. The hitch-hikers thumbs are exactly the same as Maddy's hands. The feet are slightly clubbed. Small jaw. Bell-shaped torso. All things we have seen before and recognise very clearly. For "average babies", these issues do not exist at this stage.

It's only been in the last few days that I've realised that this pregnancy can be healing too. The worst thing when I was pregnant with Maddy was that fear of the unknown. The searching for a diagnosis. Not knowing if it was lethal or not. This time, that fear is completely gone. There's no need for "prenatal diagnostics" because we know the diagnosis already. Is there still unknowns? A little - there is a range of severity with diastrophic dwarfism, even with between siblings. So this baby could be less severely affected than Maddy, or she could be more severely affected. We don't know until she is born.

I've chosen not to register yet at the public hospital where Maddy was born simply because I don't need the extra stress. I have a wonderful doctor who is happy to support me through the rest of my pregnancy, although we both know where this baby needs to be born. We both agree that technically, my pregnancy is not "high risk" to me, I'm not at risk of premature labour, there's no extra care that I need (other than frequent ultrasounds just to make sure the little one is growing). So I can at least have a "normal" pregnancy. That in itself is healing.

Please continue to keep our family in your thoughts and prayers - I'm sure that we will have ups and downs, even though this was not a completely unexpected outcome. Also please pray for our child - that she will grow stronger, particularly her ribs, lungs and airways. Pray for the doctors who will care for us during the pregnancy and for her after she is born. And for our family as we will possibly be spending this Christmas in NICU (although it would be really nice not to!)

We are all older and wiser, and a lot more educated, than we were this time three years ago. "It's not our first time at the rodeo", they say. This time, we're holding onto hope - again :) And with a whole lot more confidence, and a lot less fear this time too.


  1. I understand mixed emotions 100% we also have two kids with DD.I wish you the best and will keep you and your family in my prayers.

  2. Oh, WOW! I honestly didn't expect to read this.
    Of course, I will keep you in my thoughts! You will have another beautiful baby no matter what! Hugs!

  3. You are most definitely in our family's prayers. Though we have very different situations, I had some of the exact thoughts this morning that you wrote in the first part of this post, and I so appreciated what you wrote. Love to you and your family.

  4. Congratulations on another special little one coming your way. Although it may seem mixed for you right now, I have no doubt in my heart that this angel will be the perfect addition to your family. Maddy ( like you said) will have a best friend who is just like her. To me this is a blessing!!! They can lean on each other through good times and difficult times. They will have each other for support and they will be the only ones who can relate to one another. In addition they will have Lana and you guys (her parents) for extra love and support and to me you can't get any better than that.
    I will keep you in my prayers but I know everything will be fine. You are a strong mommy and your daughters are lucky to have you. You will get through this pregnancy less stressed because you know what to expect with DD. the best part is that Maddy will become a big sister! She will be amazing! Xoxo

  5. I'm very excited to read your story .. keep writing and I will always follow your story. God choose you to face this situation. Of course you are wonderful person. Whatever all this is God's plan and is the best plan for us. I believe you will see the benefits later.
    I would love to meet you and your family especially Maddy ..may be one day, Insya Allah...