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.
Friday, August 1, 2014
August
August is quite a month.
It is Makayla's birthday month.
It is Annabelle's birthday month.
It is SMA awareness month.
It's a month we're talking "off" from the world.
Before I disappear for awhile, I thought I'd leave a few comments on each of these things...
Makayla, sweet Makayla, will be 3 next week. I can't believe that I've had 3 whole years of the joy of motherhood. She has become quite independent, creative, and compassionate. I love her with my whole heart and I am so grateful to be her mom.
10 days after Makayla turns 3, Annabelle should have turned 1. This moment was so blissfully happy.
My heart is broken and I ache for her. I long for what could have been...and yet I am also reminded that, had Annabelle been with us today, there would be no walking, no crawling, no care-free happiness that I imagine. Annabelle had SMA. And she would have had it today, had she lived.
I have wavered back and forth over the idea of awareness. Awareness for what? Awareness' sake? What would have changed had we known about Spinal Muscular Atrophy before Annabelle was born? What would be different if the world knew about it? Even with all the support in the world, science is far from a cure. And besides, how many eyes is this little post reaching? Maybe a few people who, by now, have probably already heard (from me) those 3 seemingly benign letters: SMA...
But I don't think it really has much to do with finding a cure. Or even about SMA. We go about our daily lives, generally unaware of what others are personally struggling with. We may hear the news, scroll through the FB and Instagram feeds, get a surface understanding of what people are up to today, and wish people would stop sharing viral videos or sad stories and just post a pretty picture (maybe that's just me). But they're out there. Real, deep, weeping wounds. Not fleeting woes. Scars that last a lifetime.
Look around. You'll see them if you pay close attention. They might be hidden by smiles - have you ever noticed a family at Disneyland pushing a wheeled contraption containing a child who is propped up, hooked up, obviously disabled? Why are they smiling? It's outrageous. And yet there they are. Because that is their life. Don't pity them or avoid eye contact because it's weird. Lift them up in prayer and thank God above that they are willing to do what it takes to make a life. And it might even be hidden altogether. Go look at pictures of Annabelle on my FB page. Would you have any idea that she was dying?
Look at her beautiful face and remember her. And then be kind to people.
That leads me to the last point. We need a break. I need a break. We've been plugging along reasonably well. But in some ways we've acted like nothing has changed. Our family has changed. Our church community has changed. And we need to pause, acknowledge all that has happened, and take a breath.
So I'll leave you with the hymn that I've been humming all week.
It is Makayla's birthday month.
It is Annabelle's birthday month.
It is SMA awareness month.
It's a month we're talking "off" from the world.
Before I disappear for awhile, I thought I'd leave a few comments on each of these things...
Makayla, sweet Makayla, will be 3 next week. I can't believe that I've had 3 whole years of the joy of motherhood. She has become quite independent, creative, and compassionate. I love her with my whole heart and I am so grateful to be her mom.
10 days after Makayla turns 3, Annabelle should have turned 1. This moment was so blissfully happy.
My heart is broken and I ache for her. I long for what could have been...and yet I am also reminded that, had Annabelle been with us today, there would be no walking, no crawling, no care-free happiness that I imagine. Annabelle had SMA. And she would have had it today, had she lived.
I have wavered back and forth over the idea of awareness. Awareness for what? Awareness' sake? What would have changed had we known about Spinal Muscular Atrophy before Annabelle was born? What would be different if the world knew about it? Even with all the support in the world, science is far from a cure. And besides, how many eyes is this little post reaching? Maybe a few people who, by now, have probably already heard (from me) those 3 seemingly benign letters: SMA...
But I don't think it really has much to do with finding a cure. Or even about SMA. We go about our daily lives, generally unaware of what others are personally struggling with. We may hear the news, scroll through the FB and Instagram feeds, get a surface understanding of what people are up to today, and wish people would stop sharing viral videos or sad stories and just post a pretty picture (maybe that's just me). But they're out there. Real, deep, weeping wounds. Not fleeting woes. Scars that last a lifetime.
Look around. You'll see them if you pay close attention. They might be hidden by smiles - have you ever noticed a family at Disneyland pushing a wheeled contraption containing a child who is propped up, hooked up, obviously disabled? Why are they smiling? It's outrageous. And yet there they are. Because that is their life. Don't pity them or avoid eye contact because it's weird. Lift them up in prayer and thank God above that they are willing to do what it takes to make a life. And it might even be hidden altogether. Go look at pictures of Annabelle on my FB page. Would you have any idea that she was dying?
Look at her beautiful face and remember her. And then be kind to people.
That leads me to the last point. We need a break. I need a break. We've been plugging along reasonably well. But in some ways we've acted like nothing has changed. Our family has changed. Our church community has changed. And we need to pause, acknowledge all that has happened, and take a breath.
So I'll leave you with the hymn that I've been humming all week.
- Be Thou my Vision, O Lord of my heart;
- Naught be all else to me, save that Thou art;
Thou my best Thought, by day or by night,
Waking or sleeping, Thy presence my light. - Be Thou my Wisdom, and Thou my true Word;
I ever with Thee and Thou with me, Lord;
Thou my great Father, I Thy true son;
Thou in me dwelling, and I with Thee one. - Riches I heed not, nor man’s empty praise,
Thou mine Inheritance, now and always:
Thou and Thou only, first in my heart,
High King of Heaven, my Treasure Thou art. - High King of Heaven, my victory won,
May I reach Heaven’s joys, O bright Heav’n’s Sun!
Heart of my own heart, whate’er befall,
Still be my Vision, O Ruler of all.
Monday, July 14, 2014
Innocence Lost
The hardest pictures for me to look at are the ones before we knew about SMA. There is something about the innocence in our smiles, the carefree happiness, the joy without worry...I'm envious of our past selves.
Today at VBS we talked about Creation...It might seem silly, but I feel a little bit like Eve. One moment she was secure, content, innocent. And then she wasn't. There are obvious differences in our situations, but I can empathize with the ache she must have felt to turn back the clock, to start over. For us though, no decision could have changed Annabelle's fate. And my heart rips a little each time I look at pictures of my growing belly. She was so safe in there. And yet she wasn't. The disease that took her from us was already doing its terrible work, even from within.
I have wanted to write several times this month, but my thoughts are confused. I am pulled in different directions and I can't seem to quiet my mind long enough to organize the chaos.
As we approach August I am so terribly sad. We should be planning a 1st and 3rd birthday bash for my August girls. Makayla is so excited about her birthday - she declares her plans to all and is liberal with her invitations! I think about the little play date we had for her last year - it was a billion degrees and I was 40 weeks pregnant, but I was so happy. This year I don't feel much in the celebration mood, but my little girl is going to be 3. She wants a strawberry cake and games. And strawberry cake and games she will get.
8 days later we will remember the day Annabelle was born. But she won't be here for us to celebrate. And I am so very sad. I don't even know what else to say.
Ryan makes a video slide show every year - it's a big deal and he usually shows it on or around new years. 2013 remained half-completed for a long time. But this weekend he finished it and we were able to sit and watch it as a family. The hardest parts are still the pictures of before our innocence was lost. I remember the pukey weeks in winter, my growing belly in spring, and Makayla's growing excitement in summer. You know what she wanted most? For Sister to sit in the shopping cart next to her. But she never did. And that ridiculous little detail breaks my heart.
We have had many happy times since we learned about SMA. We had happy times with Annabelle, and we have had happy times since she died. But something struck me as I watched last year in review - something I hadn't felt before - a sense of guilt over the smiles that came after her death. Family "squish" pictures that should have 4 silly faces, but only have 3 grinning ones...and then there are times like now when I just can't imagine how we can smile without her here.
Right now is "nap time." Makayla is in her bed belting out "The Big God Story" and teaching her dollies to dance.
Jesus loves me,
made all I see,
wanted me to be
part of the Big God Story.
And I am thankful for the happy times, and for Makayla's sweet innocence.
Today at VBS we talked about Creation...It might seem silly, but I feel a little bit like Eve. One moment she was secure, content, innocent. And then she wasn't. There are obvious differences in our situations, but I can empathize with the ache she must have felt to turn back the clock, to start over. For us though, no decision could have changed Annabelle's fate. And my heart rips a little each time I look at pictures of my growing belly. She was so safe in there. And yet she wasn't. The disease that took her from us was already doing its terrible work, even from within.
I have wanted to write several times this month, but my thoughts are confused. I am pulled in different directions and I can't seem to quiet my mind long enough to organize the chaos.
As we approach August I am so terribly sad. We should be planning a 1st and 3rd birthday bash for my August girls. Makayla is so excited about her birthday - she declares her plans to all and is liberal with her invitations! I think about the little play date we had for her last year - it was a billion degrees and I was 40 weeks pregnant, but I was so happy. This year I don't feel much in the celebration mood, but my little girl is going to be 3. She wants a strawberry cake and games. And strawberry cake and games she will get.
8 days later we will remember the day Annabelle was born. But she won't be here for us to celebrate. And I am so very sad. I don't even know what else to say.
Ryan makes a video slide show every year - it's a big deal and he usually shows it on or around new years. 2013 remained half-completed for a long time. But this weekend he finished it and we were able to sit and watch it as a family. The hardest parts are still the pictures of before our innocence was lost. I remember the pukey weeks in winter, my growing belly in spring, and Makayla's growing excitement in summer. You know what she wanted most? For Sister to sit in the shopping cart next to her. But she never did. And that ridiculous little detail breaks my heart.
We have had many happy times since we learned about SMA. We had happy times with Annabelle, and we have had happy times since she died. But something struck me as I watched last year in review - something I hadn't felt before - a sense of guilt over the smiles that came after her death. Family "squish" pictures that should have 4 silly faces, but only have 3 grinning ones...and then there are times like now when I just can't imagine how we can smile without her here.
Right now is "nap time." Makayla is in her bed belting out "The Big God Story" and teaching her dollies to dance.
Jesus loves me,
made all I see,
wanted me to be
part of the Big God Story.
And I am thankful for the happy times, and for Makayla's sweet innocence.
Tuesday, June 10, 2014
There isn't a manual
You could say it about a lot of things, but it's true...there isn't a manual for this stuff. No one prepares for living with the death of their child. I have spent plenty of time fussing over what other people say (and should NOT say), but I've been struck with the fact that, often, I don't know what to say.
How many children do you have? Is Makayla your only child?
I've been asked these questions many times - it's just polite banter. The grocery clerk, the mom at the park, the server at a restaurant, even strangers just passing by - I never noticed how often people asked these kinds of questions until I realized I wasn't really sure how to respond.
Do I awkwardly avoid the question and redirect the conversation? Outright lying minimizes Annabelle's rightful place in our family and breaks my heart so I'd never do that. Do I tell the truth? Of course. Why would I lie? I have 2 daughters. Makayla is a big sister.
Oh, is the little one home with Grandma? or How old are they?
No one means a thing - just normal chit-chat. I can't lie...so do I enter the uncomfortable realm of the truth? It kills the atmosphere, no matter what. (For the record, I'm not the least bit afraid to share about my beautiful Annabelle, and I will discuss just about anything in the right time and right place...but these passing conversations with acquaintances are tricky to navigate.)
No, she passed away in October. or Makayla is almost 3 and Annabelle was 2 months old when she passed away.
There are a few ways people respond. Some people aren't really listening. It's true - I've gotten the strangest follow-up questions that make it abundantly clear my words have fallen on deaf, or perhaps just distracted ears. Just layering on the awkward...Some seem appalled by their own ignorance and apologize profusely for asking...ugh, now I feel guilty. Others launch into 2nd, 3rd, 4th-hand stories about friends (I've yet to encounter another stranger who has a similar story...perhaps we just know not to ask those innocent questions). On more than one occasion, I've been subjected to long stories about late pets...can I just say that this tests the limits of my composure? No. No. No. I don't care how long Brixie was in your family, it isn't the same.
Most of the time, it's awkward. One or the other becomes overly apologetic (can you picture that pity face?) or overly dismissive just to get through a few minutes of meaningless conversation, and both are relieved when it's over. I don't blame these people and I hope they don't blame me either - there just aren't 5 simple steps to follow. But - and it's a really big but - there are some out there who can handle such interactions with incredible grace. They can quietly share their condolences, and I can thank them for their kindness and experience relief in being able to share the truth.
I had one such interaction just last week. Let me just say that being able to talk with someone in passing (not the open heart conversations you have with your closest friends), but also honestly without destroying the day...that was such a huge gift. She wasn't appalled by my honesty. She was sorry, truly sorry, but also respectfully interested. It's ok to ask what happened. Do I want to pour out the details at the grocery store? No. However, if you want to know, it's ok to ask. I promise, I have the short version, too. It's not going to make me sadder. It's not going to re-open wounds. They're already open. And, frankly, if they've truly healed, then poking them won't hurt any more than usual. Tears are ok. They're not necessary, but they're ok. Sobbing in public - weird. Probably need to deal with something if there's weeping going on at random (this is why church is often SO hard for me). And the best way to respond when you don't know what to say is to say nothing at all.
The long and the short of it is, I don't expect anyone to know how to do it all. I just realized that I've learned quite a lot along the way and, rather than writing a scathing book about the ridiculous ways people do respond, it would be more productive to share the good examples. (I'm not saying I'm above writing that book though...) At the same time, maybe it would help the world to know that we don't know how to do it either.
How many children do you have? Is Makayla your only child?
I've been asked these questions many times - it's just polite banter. The grocery clerk, the mom at the park, the server at a restaurant, even strangers just passing by - I never noticed how often people asked these kinds of questions until I realized I wasn't really sure how to respond.
Do I awkwardly avoid the question and redirect the conversation? Outright lying minimizes Annabelle's rightful place in our family and breaks my heart so I'd never do that. Do I tell the truth? Of course. Why would I lie? I have 2 daughters. Makayla is a big sister.
Oh, is the little one home with Grandma? or How old are they?
No one means a thing - just normal chit-chat. I can't lie...so do I enter the uncomfortable realm of the truth? It kills the atmosphere, no matter what. (For the record, I'm not the least bit afraid to share about my beautiful Annabelle, and I will discuss just about anything in the right time and right place...but these passing conversations with acquaintances are tricky to navigate.)
No, she passed away in October. or Makayla is almost 3 and Annabelle was 2 months old when she passed away.
There are a few ways people respond. Some people aren't really listening. It's true - I've gotten the strangest follow-up questions that make it abundantly clear my words have fallen on deaf, or perhaps just distracted ears. Just layering on the awkward...Some seem appalled by their own ignorance and apologize profusely for asking...ugh, now I feel guilty. Others launch into 2nd, 3rd, 4th-hand stories about friends (I've yet to encounter another stranger who has a similar story...perhaps we just know not to ask those innocent questions). On more than one occasion, I've been subjected to long stories about late pets...can I just say that this tests the limits of my composure? No. No. No. I don't care how long Brixie was in your family, it isn't the same.
Most of the time, it's awkward. One or the other becomes overly apologetic (can you picture that pity face?) or overly dismissive just to get through a few minutes of meaningless conversation, and both are relieved when it's over. I don't blame these people and I hope they don't blame me either - there just aren't 5 simple steps to follow. But - and it's a really big but - there are some out there who can handle such interactions with incredible grace. They can quietly share their condolences, and I can thank them for their kindness and experience relief in being able to share the truth.
I had one such interaction just last week. Let me just say that being able to talk with someone in passing (not the open heart conversations you have with your closest friends), but also honestly without destroying the day...that was such a huge gift. She wasn't appalled by my honesty. She was sorry, truly sorry, but also respectfully interested. It's ok to ask what happened. Do I want to pour out the details at the grocery store? No. However, if you want to know, it's ok to ask. I promise, I have the short version, too. It's not going to make me sadder. It's not going to re-open wounds. They're already open. And, frankly, if they've truly healed, then poking them won't hurt any more than usual. Tears are ok. They're not necessary, but they're ok. Sobbing in public - weird. Probably need to deal with something if there's weeping going on at random (this is why church is often SO hard for me). And the best way to respond when you don't know what to say is to say nothing at all.
The long and the short of it is, I don't expect anyone to know how to do it all. I just realized that I've learned quite a lot along the way and, rather than writing a scathing book about the ridiculous ways people do respond, it would be more productive to share the good examples. (I'm not saying I'm above writing that book though...) At the same time, maybe it would help the world to know that we don't know how to do it either.
Monday, June 2, 2014
Not your average 5k
On Saturday I ran my first 5k. It wasn't glamorous. It wasn't impressive. But I ran the whole way, and I finished.
A couple months ago, Annabelle's nurse e-mailed me a flyer for a 5k event benefiting Trinity Kids Care. Considering that, while pregnant with Annabelle, I had declared my goal to run a 5k in her first year (and the fact that months had come and gone with no commitment to prove it), it seemed perfect. I began talking it up to family members and composing a support letter. I didn't give it that much thought, but I assumed I could raise a few hundred dollars for a great cause and complete a personal goal at the same time.
There were plenty of reasons NOT to participate in this event. Our grief is fresh - no one would expect us to do this. It's hard to balance the hooplah of an event with the tragic reality of why we know about children's hospice in the first place. It was emotionally and physically exhausting to coordinate, prepare, worry...just look back at that first picture of us crossing the finish line - I'm not beaming triumphantly, glowing with pride. I'm beet red and dripping with sweat. We didn't raise money to find a cure for SMA. We didn't provide hope for another family fighting SMA.
So why did I do it?
Just because there isn't a cure, doesn't mean there isn't healing.
In the group pictures above, there are family members, close friends, acquaintances. And they all came to show us that Annabelle is loved. We are loved. This event did not take away the pain of Annabelle's death. But it's ok to smile sometimes; to rally together and remember that she has left a significant impact on the world.
Look at that dreadful picture at the top again. See Gay in the background, cheering us on? She and her team give tirelessly to those who have nothing to offer. So we'll be back again next year...because this is part of our story.
A couple months ago, Annabelle's nurse e-mailed me a flyer for a 5k event benefiting Trinity Kids Care. Considering that, while pregnant with Annabelle, I had declared my goal to run a 5k in her first year (and the fact that months had come and gone with no commitment to prove it), it seemed perfect. I began talking it up to family members and composing a support letter. I didn't give it that much thought, but I assumed I could raise a few hundred dollars for a great cause and complete a personal goal at the same time.
It wasn't long before I had doubts. I had never asked for monetary support for anything like this before. Even scarier was asking people to join our team - and I blasted the support/invite to anyone and everyone. It is remarkably nerve-wracking to send out requests with no idea if there will be any response - I wavered between excitement and self-doubt. However, I didn't have to wonder long before I got a message from a dear friend...a message that turned into the donation of 65 custom shirts for our team and supporters.
I have to stop here and publicly thank Briana for coordinating the t-shirt project, Nate who donated his time and talents to design the shirt, SolidT who did the printing and gave us 15 extra shirts to make up for a slight delay, and the generous donor of the money for the shirts which meant 100% of the sales went to Trinity Kids.
Then I had new doubts - how was I supposed to sell so many shirts? Would people want the shirt even if they weren't going to participate? About the same time, we began getting donations...I had no idea how many would wish to give. Perhaps it gave people a tangible way to help. Whatever the reason, and in spite of my nerves, I knew from personal experience that this was a worthy organization - if any deserved me stepping out of my comfort zone, it was Trinity Kids.
While we're on the subject of comfort zone...can I list the things that required me to LEAP outside of mine in preparation for this event?
1. Running
2. Asking for money
3. Asking for people's time
4. Gathering people together from all areas of my life, and even some I hardly knew
5. Inviting people in to something very personal
6. Did I mention running?
I could probably think of more...the point is, it wasn't easy, but it was good.
The day we announced the shirt sales, I was floored by the response. The first 50 shirts were spoken for within 36 hours and we had requests for more. When the printing was delayed and SolidT offered us 15 extras, there were only 3 left by the next day. Wow.
On the morning of the race, Team Annabelle was unmistakable. I will treasure this memory.
There were plenty of reasons NOT to participate in this event. Our grief is fresh - no one would expect us to do this. It's hard to balance the hooplah of an event with the tragic reality of why we know about children's hospice in the first place. It was emotionally and physically exhausting to coordinate, prepare, worry...just look back at that first picture of us crossing the finish line - I'm not beaming triumphantly, glowing with pride. I'm beet red and dripping with sweat. We didn't raise money to find a cure for SMA. We didn't provide hope for another family fighting SMA.
So why did I do it?
Just because there isn't a cure, doesn't mean there isn't healing.
In the group pictures above, there are family members, close friends, acquaintances. And they all came to show us that Annabelle is loved. We are loved. This event did not take away the pain of Annabelle's death. But it's ok to smile sometimes; to rally together and remember that she has left a significant impact on the world.
Look at that dreadful picture at the top again. See Gay in the background, cheering us on? She and her team give tirelessly to those who have nothing to offer. So we'll be back again next year...because this is part of our story.
Monday, May 5, 2014
Annabelle's Story: God's Mercies
To family and close friends who walked with us through tragedy, God's mercies in Annabelle's life and death are now apparent.
To those on the outside - those who don't understand SMA, or perhaps those who don't understand God - they might be obscure.
I share these with you not to diminish the pain we experience, not to paint a silver lining on the storm we are still in, not even to give permission to anyone who might be anxious to say, "see, in all things He works for the good of those who love Him." Instead, I share them to point to a God who loves us, who has experienced the pain of loss, and who can walk along side us in our suffering.
We weren't alone::
When Ryan put together the slide show for Annabelle's service, one of the songs he used was "Never Once" - an amazing song which he chose to reflect that God was with us and that our family and friends were with us the whole time. We felt alone plenty of times - and still do. That is the nature of grief. But we know that we are not alone.
They were there to celebrate Annabelle with us, to clean our house and fold our laundry, to bring meals, to pray, to hold our hands, to smile for photos, to weep, simply to let us know that we weren't alone.
Last week at church, a friend pulled us aside to tell us - through tears and visible pain - that during service, he had felt the weight of what we had been through. But, in the midst of the sorrow, he saw Annabelle's face clearly and he saw her walking - yes walking - with Jesus.
(Now, if you don't have a lifelong relationship with Christ, this might sound a little too magical or even corny. But if you know with certainty that God is in Heaven and those who believe in Him will enter into His glory, then you just might be able to understand the beauty of this picture. Annabelle is whole, perfect, and strong in Heaven. Not sitting in puffy clouds with wings and a harp. In the presence of God. She must have so much to teach me.)
The miracle of nursing::
I prayed for the big miracle - that God would heal Annabelle. No one would fault me for a purely selfish desire to see my baby restored to perfect health, and able to live a full life here in our family; but I even tried to pull from the deepest places in my heart the pure desire for that miracle to be entirely about bringing glory to God - the doctors would be amazed, they would have to believe. But sometimes I just didn't have the words, the strength, and focus to pray for the big miracle. Sometimes I felt defeated by the knowledge that it would come to nothing - she would die and I couldn't stop it. (We can talk all day long about faith the size of a mustard seed and moving mountains, but this is what I experienced.) What I managed to have endless energy for was the prayer that she would continue to eat well.
The ability to suck and swallow is one of the first things that SMA babies lose. Eating is not the only thing affected by this, but it was the one I could most easily focus on. Nursing is infinitely important to me. And God granted me a miracle. Annabelle nursed just a few hours before she passed away. We had experienced a few difficult feedings, but she was 100% breastfed at home (she had 3-4 bottles of formula in the hospital) and that morning she ate like she meant it. The nurses said it was not supposed to happen that way. I suppose she was giving me one last gift.
Annabelle's life and death::
I've written some about living with our sweet one - the point is, we lived. We didn't know how long we would have her, but we knew that at some point we would be bound to the home with tubes and breathing treatments - minimal efforts to ensure her comfort.
I've not written much about her death, not because there is nothing to say (although, perhaps there is nothing to say), but because I don't want it to darken the story of her life. I don't include this in a post about God's mercies lightly. On October 24th, we woke up and had a routine morning. The girls played in the kitchen while I cleaned up breakfast. Makayla traced Annabelle's feet with markers and helped her clap her hands. I have video of them together at about 8:30. The nurse came over for her weekly checkup at 10. Annabelle died at 10:45. I tremble to write that God showed us great mercy in this; but He did. It wasn't supposed to happen that way. She decided she didn't want tubes or suctions or morphine. She never once had any medication.
Ryan and I::
So many things sought to pull us apart. The back and forth from the hospital, the lack of sleep, the differences in the way we process and respond, the fact that the condition is genetic (the implications of this are enormous)...I could list many more. We could have pushed each other away. We could have yelled and screamed and blamed. But we came together. Decisions - difficult, gut-wrenching ones - were made without argument. In the quiet times after Annabelle's service, when we could have just drifted apart, we grew even closer. We had grace for one another when we were on different pages of the same book - one deep in sorrow, the other finally coming up for air.
Grief highlights the negative aspects of individuals and relationships. If you know me at all, you know that I am impatient, demanding, pushy - so it is not with my own strength that I have managed to sit quietly, waiting. I have by no means been perfect in my grief - and I suppose I'm deserving of a little extra grace - but what could have caused me to explode, simply didn't.
Makayla::
Oh my goodness, Makayla. I can't even begin because there would be no end. Just look at her. Hear her sing. Observe as she sweetly mothers anyone and everyone around her. She is amazing.
We weren't alone::
When Ryan put together the slide show for Annabelle's service, one of the songs he used was "Never Once" - an amazing song which he chose to reflect that God was with us and that our family and friends were with us the whole time. We felt alone plenty of times - and still do. That is the nature of grief. But we know that we are not alone.
They were there to celebrate Annabelle with us, to clean our house and fold our laundry, to bring meals, to pray, to hold our hands, to smile for photos, to weep, simply to let us know that we weren't alone.
Last week at church, a friend pulled us aside to tell us - through tears and visible pain - that during service, he had felt the weight of what we had been through. But, in the midst of the sorrow, he saw Annabelle's face clearly and he saw her walking - yes walking - with Jesus.
(Now, if you don't have a lifelong relationship with Christ, this might sound a little too magical or even corny. But if you know with certainty that God is in Heaven and those who believe in Him will enter into His glory, then you just might be able to understand the beauty of this picture. Annabelle is whole, perfect, and strong in Heaven. Not sitting in puffy clouds with wings and a harp. In the presence of God. She must have so much to teach me.)
The miracle of nursing::
I prayed for the big miracle - that God would heal Annabelle. No one would fault me for a purely selfish desire to see my baby restored to perfect health, and able to live a full life here in our family; but I even tried to pull from the deepest places in my heart the pure desire for that miracle to be entirely about bringing glory to God - the doctors would be amazed, they would have to believe. But sometimes I just didn't have the words, the strength, and focus to pray for the big miracle. Sometimes I felt defeated by the knowledge that it would come to nothing - she would die and I couldn't stop it. (We can talk all day long about faith the size of a mustard seed and moving mountains, but this is what I experienced.) What I managed to have endless energy for was the prayer that she would continue to eat well.
The ability to suck and swallow is one of the first things that SMA babies lose. Eating is not the only thing affected by this, but it was the one I could most easily focus on. Nursing is infinitely important to me. And God granted me a miracle. Annabelle nursed just a few hours before she passed away. We had experienced a few difficult feedings, but she was 100% breastfed at home (she had 3-4 bottles of formula in the hospital) and that morning she ate like she meant it. The nurses said it was not supposed to happen that way. I suppose she was giving me one last gift.
Annabelle's life and death::
I've written some about living with our sweet one - the point is, we lived. We didn't know how long we would have her, but we knew that at some point we would be bound to the home with tubes and breathing treatments - minimal efforts to ensure her comfort.
I've not written much about her death, not because there is nothing to say (although, perhaps there is nothing to say), but because I don't want it to darken the story of her life. I don't include this in a post about God's mercies lightly. On October 24th, we woke up and had a routine morning. The girls played in the kitchen while I cleaned up breakfast. Makayla traced Annabelle's feet with markers and helped her clap her hands. I have video of them together at about 8:30. The nurse came over for her weekly checkup at 10. Annabelle died at 10:45. I tremble to write that God showed us great mercy in this; but He did. It wasn't supposed to happen that way. She decided she didn't want tubes or suctions or morphine. She never once had any medication.
Ryan and I::
So many things sought to pull us apart. The back and forth from the hospital, the lack of sleep, the differences in the way we process and respond, the fact that the condition is genetic (the implications of this are enormous)...I could list many more. We could have pushed each other away. We could have yelled and screamed and blamed. But we came together. Decisions - difficult, gut-wrenching ones - were made without argument. In the quiet times after Annabelle's service, when we could have just drifted apart, we grew even closer. We had grace for one another when we were on different pages of the same book - one deep in sorrow, the other finally coming up for air.
Grief highlights the negative aspects of individuals and relationships. If you know me at all, you know that I am impatient, demanding, pushy - so it is not with my own strength that I have managed to sit quietly, waiting. I have by no means been perfect in my grief - and I suppose I'm deserving of a little extra grace - but what could have caused me to explode, simply didn't.
Makayla::
Oh my goodness, Makayla. I can't even begin because there would be no end. Just look at her. Hear her sing. Observe as she sweetly mothers anyone and everyone around her. She is amazing.
Because of the Lord’s great love we are not consumed,
for his compassions never fail.
23
They are new every morning;
great is your faithfulness.
24
I say to myself, “The Lord is my portion;
therefore I will wait for him.
Lamentations 3:22-24
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