Our situation is a compound one. We lost our beautiful daughter to an ugly disease. Nightmare. That ugly disease is genetic. Nightmare. What many don't consider is the impact this has on our future.
In reality, what I'm going to share is private. I am comfortable talking about it, but posting it on a blog makes it so very public. I don't know who will read this or how it will be taken. I wouldn't normally share the details of our family planning...but for some reason, it's part of our story, and in order to begin the next chapter, I have to finish the one we're in.
When we learned of Annabelle's diagnosis, we were quick to be tested for the SMA mutation ourselves. The doctors told us Makayla should be fine (I choose never to relive the week we had to wait for those results), and, praise the Lord, she is healthy. She is likely a carrier, but she will have to decide if she wishes to be tested in the future. The chance that Ryan and I were both carriers was great, but we had to be certain because it would affect the future of our family. The results confirmed what logic told us - we both carry the recessive trait for SMA. We will not be physically affected by the disease, but Ryan and I can pass it to our children.
Once the results were in, there was only one viable option in our minds. However, to explain our decision, here are the options we had.
1. Continue having children naturally. Any child we conceive has a 25% chance of expressing SMA. The 75% chance that future children could be healthy is enormously tempting; but when you have lived through the consequences, 25% is a huge risk; and it is a risk we are unwilling to take. We were ignorant of SMA before Annabelle was born and can't blame ourselves for her condition or her death. Now we have knowledge. To choose the risk would have dire consequences on us, our unborn children, Makayla, and on the rest of our family. Ryan and I stand firm in this decision, but it is one of the hardest decisions I can imagine making.
2. Not have any more children. We do not believe that our family is done growing and therefore we are not choosing this option for now.
3. In Vitro Fertilization (IVF) with Preimplantation Genetic Diagnosis (PGD). Let me explain as simply as I can...IVF is a process of extracting eggs and sperm, fertilizing them in a lab, thereby creating embryos that are then transferred back into the mother's womb. PGD is a test done to determine the embryos' genetic makeup. It does not harm the embryos and would give definitive results regarding genetic abnormalities such as SMA. This sounds ideal. However, the test can only be done after the embryos are created. The presumption is that embryos with genetic abnormalities would be destroyed. To us, life begins at conception and to discard children simply to save ourselves the pain of enduring their lives is unthinkable. We would not have aborted Annabelle had we known she had SMA. Her life was so short, yet she impacted many. We have experienced great pain, but would never trade a day of her life to be free of that heartache.
4. Adoption. Something we had never considered before suddenly came to the forefront of our attention. We hadn't been researching long when we discovered Embryo Adoption...it's where the world of IVF meets the world of adoption and they come crashing together into a pretty amazing opportunity.
We don't know exactly where God is leading us, but He's made a clear path in a direction we had never looked before. With faith, leaning on the prayers of many, we are putting one foot in front of the other.
For I am about to do something new.
See, I have already begun! Do you not see it?
I will make a pathway through the wilderness.
I will create rivers in the dry wasteland.
Isaiah 43:19
Wednesday, September 24, 2014
Monday, September 1, 2014
Why did Jesus say no?
August was many things. Empty. Full. Joyful. Heartbreaking.
But every month is those things, really. I knew, logically, that taking a break from the "world" was just that - a little break from which we would return and not much would have changed. Yet, secretly, if I am not too ashamed to admit it, I hoped that it really would make a difference. That maybe things would be easier after we survived THE month. But, in most ways, it was just August. I suppose that's ok. A lesson learned, if nothing else.
Don't get me wrong, I think we got a lot from turning inward this month. We had many good family moments and it really was refreshing not to worry about what anyone else was doing or thinking. This may sound selfish, but for me it's part of moving forward.
There was a lot of anxiety as the days approached Annabelle's birthday. August 16th was difficult, but not in ways I assumed it would be. We chose not to celebrate corporately. Instead, we took a family bike ride, picked up some flowers (M picked a large, pink bouquet), and took Annabelle's photo album to her grave to sit and remember quietly for a time.
On our way there, Makayla said with straightforward innocence: "Mommy, you just need to ask Jesus for Annabelle back."
It's one of those statements that makes time stand still.
"We did, sweetie. He said no."
Oh how very imperfect and ignorant we are. The thing that rocked me the most is that she's really right. He could deliver her back just as easy as that. I don't have a clue how it all works, I just know that we begged and the answer was no. Not here. Not now. So instead, we sat at a tiny grave and remembered her. Makayla hugged me, patted my back, and said, "it's okay, I miss her too." I cried for Annabelle. I cried for myself. I cried for Makayla.
The next day time stopped again. "Why did Jesus say no, Mommy?"
"I don't know." And so we continue to learn how little we really know. How little we control. How little we can even imagine. I pray that Makayla maintains her faith - not just hope, but real faith, knowing that Jesus can heal, can perform miracles, even when His answer is sometimes no.
There are times when it's hard to see past the difficulties. But there are other times characterized by smiles. New memories for new photo books...This month also held many fun adventures and a lot of hope for the future of our family.
But every month is those things, really. I knew, logically, that taking a break from the "world" was just that - a little break from which we would return and not much would have changed. Yet, secretly, if I am not too ashamed to admit it, I hoped that it really would make a difference. That maybe things would be easier after we survived THE month. But, in most ways, it was just August. I suppose that's ok. A lesson learned, if nothing else.
Don't get me wrong, I think we got a lot from turning inward this month. We had many good family moments and it really was refreshing not to worry about what anyone else was doing or thinking. This may sound selfish, but for me it's part of moving forward.
There was a lot of anxiety as the days approached Annabelle's birthday. August 16th was difficult, but not in ways I assumed it would be. We chose not to celebrate corporately. Instead, we took a family bike ride, picked up some flowers (M picked a large, pink bouquet), and took Annabelle's photo album to her grave to sit and remember quietly for a time.
On our way there, Makayla said with straightforward innocence: "Mommy, you just need to ask Jesus for Annabelle back."
It's one of those statements that makes time stand still.
"We did, sweetie. He said no."
Oh how very imperfect and ignorant we are. The thing that rocked me the most is that she's really right. He could deliver her back just as easy as that. I don't have a clue how it all works, I just know that we begged and the answer was no. Not here. Not now. So instead, we sat at a tiny grave and remembered her. Makayla hugged me, patted my back, and said, "it's okay, I miss her too." I cried for Annabelle. I cried for myself. I cried for Makayla.
The next day time stopped again. "Why did Jesus say no, Mommy?"
"I don't know." And so we continue to learn how little we really know. How little we control. How little we can even imagine. I pray that Makayla maintains her faith - not just hope, but real faith, knowing that Jesus can heal, can perform miracles, even when His answer is sometimes no.
There are times when it's hard to see past the difficulties. But there are other times characterized by smiles. New memories for new photo books...This month also held many fun adventures and a lot of hope for the future of our family.
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