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.
Monday, July 14, 2014
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
Tuesday, April 29, 2014
Annabelle's Story: Living
"Cherish every moment."
We hear this all the time. Since I had Makayla I have heard this advice from strangers weekly. It's a really nice thought. Of course, we hope to live in such a way that doesn't minimize the simple beauty of the day-to-day, particularly with your children.
Can I be real though? I wanted to spend a lifetime with Annabelle, not celebrate her weeks and months because I knew there would not be many.
Oh we made the most of it - we threw a family party for her 1 month birthday and Ryan's 31st combined. And we had a house full of friends for her 2 months. It was wonderful and I am forever grateful that we made special moments and celebrated the time she was with us. But part of me hated it. It was one more reminder that we were losing her.
But what can you do? We settled into routines. We went on family adventures. We did our best to live our lives and to love what we had rather than focus on what we were losing. But we grieved.
We did all the things that we would have done had Annabelle been healthy, and probably even more. Erin came to visit as often as she could. We took a billion pictures.
Annabelle didn't do well in the car. She was the sweetest, calmest baby, but the car seat positioned her in such a way that pressure on her lungs and restriction of her airway made it hard for her to breathe. Sometimes she was just fine, other times she was not. It was hard.
A nurse came each week to check on Annabelle - her weight was steady, she seemed the same, so there was no more to be said. When she was about 9 weeks old, we had a suction machine delivered to the house. SMA causes respiratory issues and often babies have a difficult time clearing their mouths and throats of normal secretions. Similar to what dental hygienists use, the machine could help us clear her mouth and throat if necessary. We were comforted to have something there if we needed it...at first. It didn't take long for the truth to set in. The machine is small, hardly intimidating. But it represented the huge, daunting reality that she was so weak, she could even choke on her own saliva. We tried using it once. We thanked God that she didn't need it again.
At home, we did all the things that families of 4 do...I would wrap Annabelle up in the Moby* and we would join Makayla in her many activities. We colored, read, went for walks...and the girls bonded. Sometimes I wanted to "protect" Makayla from bonding with her sister. It might have made things easier in some ways. But it would have been terribly short sighted and entirely unfair to each one of us. Annabelle received all the love and attention a little sister could possibly ask for (and probably a lot more). Makayla got to pour out her love on her sweet sister and forever has those memories...and we have the memories of seeing our girls together. The social workers, the nurses, the people who are supposed to know - they all told us that Makayla wouldn't remember. She would have a vague imprint of loss. She would probably act out at some point in confusion over something missing. But she wouldn't really remember details. But she does. There is no way I can describe to you the simultaneous beauty and heartbreak of watching Makayla take her dolls and act out times she spent with her sister. She asks about her daily. And she grieves with a maturity no one could have anticipated. Our advisers were not misinformed. They have years of experience to tell them how it should be. But Makayla is different.
*The Moby - you may or may not have any experience with this mile-long piece of unimpressive fabric. With Makayla, I disliked it - it was hot and awkward and required far too much effort. I used it here and there because it served its purpose, but my overall impression was "eh." With Annabelle it was a necessity. Because Annabelle could not support her head at all, anything I carried her in needed to be entirely supportive of her neck - no structured carriers could accomplish this without significant modification. In addition, her neck needed to be in a position that didn't block her airway, so even modifications were insufficient. With the Moby, I could wrap her up in the exact position she liked best, cover just the back of her head to keep it secure, and thus she could go about the daily routines with Mom and Sister. I can't say enough about how important it was. In fact, after Annabelle passed, I tried to collect wraps to donate to other families with infants in hospice care - our nurse was glad to pass them on directly to families who needed them. Unfortunately, the mom sale and trade sites on FB didn't seem to believe that I was really going to donate them, and took down my requests. I got a couple from friends and cleared the wrap section at the local second-hand store. It felt good to pass along a tool that I knew would benefit other families in similar situations.
For all the talk of wraps, however, Annabelle was really Daddy's girl. No matter what her disposition, he could scoop her up and she would be perfectly content. He carried her in what looked to be the most awkward position: draped over his forearm with his hand supporting her neck and covering her chin. No matter how awkward it looked, she loved it, and only Daddy could really do it. He was often a hero, careening around the house with both girls - one content, the other giggling wildly.
What more can I say about living while your child is dying? We did our best. That is all.
We hear this all the time. Since I had Makayla I have heard this advice from strangers weekly. It's a really nice thought. Of course, we hope to live in such a way that doesn't minimize the simple beauty of the day-to-day, particularly with your children.
Can I be real though? I wanted to spend a lifetime with Annabelle, not celebrate her weeks and months because I knew there would not be many.
Oh we made the most of it - we threw a family party for her 1 month birthday and Ryan's 31st combined. And we had a house full of friends for her 2 months. It was wonderful and I am forever grateful that we made special moments and celebrated the time she was with us. But part of me hated it. It was one more reminder that we were losing her.
 |
| Annabelle 1 month, Ryan 31. Great-Grandpa Jack (seated) passed away 2 days after Annabelle did. This was the last time the family was together. |
But what can you do? We settled into routines. We went on family adventures. We did our best to live our lives and to love what we had rather than focus on what we were losing. But we grieved.
We did all the things that we would have done had Annabelle been healthy, and probably even more. Erin came to visit as often as she could. We took a billion pictures.
Annabelle didn't do well in the car. She was the sweetest, calmest baby, but the car seat positioned her in such a way that pressure on her lungs and restriction of her airway made it hard for her to breathe. Sometimes she was just fine, other times she was not. It was hard.
A nurse came each week to check on Annabelle - her weight was steady, she seemed the same, so there was no more to be said. When she was about 9 weeks old, we had a suction machine delivered to the house. SMA causes respiratory issues and often babies have a difficult time clearing their mouths and throats of normal secretions. Similar to what dental hygienists use, the machine could help us clear her mouth and throat if necessary. We were comforted to have something there if we needed it...at first. It didn't take long for the truth to set in. The machine is small, hardly intimidating. But it represented the huge, daunting reality that she was so weak, she could even choke on her own saliva. We tried using it once. We thanked God that she didn't need it again.
At home, we did all the things that families of 4 do...I would wrap Annabelle up in the Moby* and we would join Makayla in her many activities. We colored, read, went for walks...and the girls bonded. Sometimes I wanted to "protect" Makayla from bonding with her sister. It might have made things easier in some ways. But it would have been terribly short sighted and entirely unfair to each one of us. Annabelle received all the love and attention a little sister could possibly ask for (and probably a lot more). Makayla got to pour out her love on her sweet sister and forever has those memories...and we have the memories of seeing our girls together. The social workers, the nurses, the people who are supposed to know - they all told us that Makayla wouldn't remember. She would have a vague imprint of loss. She would probably act out at some point in confusion over something missing. But she wouldn't really remember details. But she does. There is no way I can describe to you the simultaneous beauty and heartbreak of watching Makayla take her dolls and act out times she spent with her sister. She asks about her daily. And she grieves with a maturity no one could have anticipated. Our advisers were not misinformed. They have years of experience to tell them how it should be. But Makayla is different.
*The Moby - you may or may not have any experience with this mile-long piece of unimpressive fabric. With Makayla, I disliked it - it was hot and awkward and required far too much effort. I used it here and there because it served its purpose, but my overall impression was "eh." With Annabelle it was a necessity. Because Annabelle could not support her head at all, anything I carried her in needed to be entirely supportive of her neck - no structured carriers could accomplish this without significant modification. In addition, her neck needed to be in a position that didn't block her airway, so even modifications were insufficient. With the Moby, I could wrap her up in the exact position she liked best, cover just the back of her head to keep it secure, and thus she could go about the daily routines with Mom and Sister. I can't say enough about how important it was. In fact, after Annabelle passed, I tried to collect wraps to donate to other families with infants in hospice care - our nurse was glad to pass them on directly to families who needed them. Unfortunately, the mom sale and trade sites on FB didn't seem to believe that I was really going to donate them, and took down my requests. I got a couple from friends and cleared the wrap section at the local second-hand store. It felt good to pass along a tool that I knew would benefit other families in similar situations. For all the talk of wraps, however, Annabelle was really Daddy's girl. No matter what her disposition, he could scoop her up and she would be perfectly content. He carried her in what looked to be the most awkward position: draped over his forearm with his hand supporting her neck and covering her chin. No matter how awkward it looked, she loved it, and only Daddy could really do it. He was often a hero, careening around the house with both girls - one content, the other giggling wildly.
 |
| Don't let his expression take away from his amazing composure and confidence as hero to 2 princesses. |
What more can I say about living while your child is dying? We did our best. That is all.
Sunday, April 27, 2014
What is SMA?
Spinal Muscular Atrophy
We had never heard of SMA before Annabelle was diagnosed. The research is unpleasant to put it nicely, but I've listed some basic information that will help explain her condition.
SMA is a motor neuron disease which causes weakness and atrophy of the muscles. Those with SMA are grouped into four types (I, II, III, IV) based on the highest level of motor function they express at the time of diagnosis.
Outwardly, it affects muscle tone of the neck, arms, and legs. Breathing and swallowing are also accomplished with muscles which puts SMA patients at huge risk for respiratory problems.
Annabelle's hypotonia (low muscle tone; weakness) was what concerned the doctors. Very few conditions cause distinct, prolonged hypotonia in infants, so there was a short list of disorders to test for. The fact that she ate so well confused the doctors - in patients her age, weak suck and swallow reflex is one of the key indicators.
SMA does not affect cognitive functions or touch or pain receptors.
Annabelle could feel our caresses and cuddles as much as any other baby. She was a very happy girl which is good indication that she didn't experience excessive pain.
It is a rare disorder occurring in approximately 8/100,000 live births. It is one of the most common rare diseases and the #1 genetic killer of infants. It is caused by a missing or mutated SMN1 gene.
Surprisingly, 1/40 people are genetic carriers of the recessive trait that causes SMA. When 2 carriers of the recessive trait conceive a child, there is a 25% chance of that child expressing SMA, and a 50% chance of that child being a carrier. Carriers are not physically affected by the trait.
Ryan and I are both carriers of the recessive gene mutation. We have no family history of SMA and there was no way we could have known that we were carriers until we were genetically tested. Even amniocentesis done during pregnancy does not routinely screen for SMA (although we didn't have this testing done) so nothing could have warned us about what was to come. Now, however, we are aware and this knowledge decisively impacts our decisions regarding future children (you can read about Our Options soon when I reestablish that link).
Let me take this moment to say that, despite the pain and sorrow we have experienced, I am so grateful we walked into parenthood ignorant of our genetic propensity to pass on SMA. Had we been tested prior to having children (some advocate this), we may never have taken the risk which blessed us with 2 beautiful daughters. Yes, knowing has changed us, but I would not advocate diving into your genetic makeup unless you have reason to believe there could be a significant risk.
Find More Information:
Families of SMA
Fight SMA
We had never heard of SMA before Annabelle was diagnosed. The research is unpleasant to put it nicely, but I've listed some basic information that will help explain her condition.
SMA is a motor neuron disease which causes weakness and atrophy of the muscles. Those with SMA are grouped into four types (I, II, III, IV) based on the highest level of motor function they express at the time of diagnosis.
Outwardly, it affects muscle tone of the neck, arms, and legs. Breathing and swallowing are also accomplished with muscles which puts SMA patients at huge risk for respiratory problems.
Annabelle's hypotonia (low muscle tone; weakness) was what concerned the doctors. Very few conditions cause distinct, prolonged hypotonia in infants, so there was a short list of disorders to test for. The fact that she ate so well confused the doctors - in patients her age, weak suck and swallow reflex is one of the key indicators.
SMA does not affect cognitive functions or touch or pain receptors.
Annabelle could feel our caresses and cuddles as much as any other baby. She was a very happy girl which is good indication that she didn't experience excessive pain.
It is a rare disorder occurring in approximately 8/100,000 live births. It is one of the most common rare diseases and the #1 genetic killer of infants. It is caused by a missing or mutated SMN1 gene.
Surprisingly, 1/40 people are genetic carriers of the recessive trait that causes SMA. When 2 carriers of the recessive trait conceive a child, there is a 25% chance of that child expressing SMA, and a 50% chance of that child being a carrier. Carriers are not physically affected by the trait.
Ryan and I are both carriers of the recessive gene mutation. We have no family history of SMA and there was no way we could have known that we were carriers until we were genetically tested. Even amniocentesis done during pregnancy does not routinely screen for SMA (although we didn't have this testing done) so nothing could have warned us about what was to come. Now, however, we are aware and this knowledge decisively impacts our decisions regarding future children (you can read about Our Options soon when I reestablish that link).
Let me take this moment to say that, despite the pain and sorrow we have experienced, I am so grateful we walked into parenthood ignorant of our genetic propensity to pass on SMA. Had we been tested prior to having children (some advocate this), we may never have taken the risk which blessed us with 2 beautiful daughters. Yes, knowing has changed us, but I would not advocate diving into your genetic makeup unless you have reason to believe there could be a significant risk.
Find More Information:
Families of SMA
Fight SMA
Friday, April 25, 2014
Annabelle's Story: Home at Last
The relief of being released from the hospital was quickly diminished by the terror of sharing horrible news with our families. My parents were home with Makayla, excited to hear that Annabelle was coming home. They had made a Welcome Home sign for the door.
It is impossible to detail the heartbreak we brought with us. "She has a terrible disease" we repeated to those who needed to know.
The onset of grief is much quieter and far less cathartic than how it is portrayed in the movies. There was no yelling. There was no throwing or crashing or outbursts of any kind - these all provide release; we experienced none. There were tears and there were questions; the kind without answers. Oh God, have mercy on us.
But Annabelle was there with us. She was alive and beautiful, and so we lived. We had a family party for her 1-week birthday. We didn't talk about her like someone already gone. We took pictures and everyone smiled. And the smiles were genuine.
Gay Walker from Trinity Kids Care - who had heard my desperate rejection of hospice care the day before - came to see that we were settled in. She would take our case and provide the support we needed in order to continue living even in the shadow of death.
What we never got was the answers to the questions that plagued us - when? how? You can pretend it doesn't matter. You can say that you're just going to enjoy every moment and live in the now. But you can't; you always want to know. I'm sure knowing would not have made it any easier, and since there was nothing anyone could tell us, we just did the best we could.
When Makayla came home from the hospital, she slept next to my bed for a month before "graduating" into her own room. Annabelle spent the first night home in her own bed, in her own room - not because I didn't want to be beside her every moment (I so desperately did, and spent many nights in her room), but because we wanted her to get to use her room for as long as she could.
Annabelle’s condition caused muscle weakness, so she didn't move very much, but then most newborns don’t. In so many ways, she was a typical baby, and if you didn't know, you wouldn't guess that she was dying.
We went to the beach, Disneyland, and Oak Glen.
Makayla was over the moon to have a sister. She held her hands, taught her signs, traced her feet with crayons, sang to her when she cried, sat with us while she nursed, and helped me change her diapers. The girls bonded instantly, and I feared the day I would have to explain why they couldn't play anymore.
Between visits from hospice nurses, we played at the park, did crafts, and spent time with family. From the outside, things looked wonderful. Our hearts were breaking, but Annabelle deserved a full life.
When we dedicated her at church, we fretted over what to say - how could we share such news with our church family without casting a shadow over the sweet life she was here to live? So after much thought and prayer, we kept it very short and very simple. And we shared her life verse from 1 Peter 2:
Therefore, rid yourselves of all malice and all deceit, hypocrisy, envy, and slander of every kind. 2 Like newborn babies, crave pure spiritual milk, so that by it you may grow up in your salvation, 3 now that you have tasted that the Lord is good.
The Lord is good. He MUST be good. I do not say this lightly, or thoughtlessly. I do not say this because I've always gone to church so I guess I better believe in God. We have seen what it means to fear the Lord. He is mighty and powerful and capable of anything. We have looked into the face of death and know that Christ overcame it. God did not give us the miracle we hoped for. I don't know if I'll ever know why. There are all sorts of canned answers, but none of them are helpful. He chose not to. That's the only answer that makes sense. That doesn't mean He wasn't merciful.
It is impossible to detail the heartbreak we brought with us. "She has a terrible disease" we repeated to those who needed to know.
The onset of grief is much quieter and far less cathartic than how it is portrayed in the movies. There was no yelling. There was no throwing or crashing or outbursts of any kind - these all provide release; we experienced none. There were tears and there were questions; the kind without answers. Oh God, have mercy on us.
But Annabelle was there with us. She was alive and beautiful, and so we lived. We had a family party for her 1-week birthday. We didn't talk about her like someone already gone. We took pictures and everyone smiled. And the smiles were genuine.
Gay Walker from Trinity Kids Care - who had heard my desperate rejection of hospice care the day before - came to see that we were settled in. She would take our case and provide the support we needed in order to continue living even in the shadow of death.
What we never got was the answers to the questions that plagued us - when? how? You can pretend it doesn't matter. You can say that you're just going to enjoy every moment and live in the now. But you can't; you always want to know. I'm sure knowing would not have made it any easier, and since there was nothing anyone could tell us, we just did the best we could.
When Makayla came home from the hospital, she slept next to my bed for a month before "graduating" into her own room. Annabelle spent the first night home in her own bed, in her own room - not because I didn't want to be beside her every moment (I so desperately did, and spent many nights in her room), but because we wanted her to get to use her room for as long as she could.
Annabelle’s condition caused muscle weakness, so she didn't move very much, but then most newborns don’t. In so many ways, she was a typical baby, and if you didn't know, you wouldn't guess that she was dying.
We went to the beach, Disneyland, and Oak Glen.
Makayla was over the moon to have a sister. She held her hands, taught her signs, traced her feet with crayons, sang to her when she cried, sat with us while she nursed, and helped me change her diapers. The girls bonded instantly, and I feared the day I would have to explain why they couldn't play anymore.
Between visits from hospice nurses, we played at the park, did crafts, and spent time with family. From the outside, things looked wonderful. Our hearts were breaking, but Annabelle deserved a full life.
When we dedicated her at church, we fretted over what to say - how could we share such news with our church family without casting a shadow over the sweet life she was here to live? So after much thought and prayer, we kept it very short and very simple. And we shared her life verse from 1 Peter 2:
Therefore, rid yourselves of all malice and all deceit, hypocrisy, envy, and slander of every kind. 2 Like newborn babies, crave pure spiritual milk, so that by it you may grow up in your salvation, 3 now that you have tasted that the Lord is good.
The Lord is good. He MUST be good. I do not say this lightly, or thoughtlessly. I do not say this because I've always gone to church so I guess I better believe in God. We have seen what it means to fear the Lord. He is mighty and powerful and capable of anything. We have looked into the face of death and know that Christ overcame it. God did not give us the miracle we hoped for. I don't know if I'll ever know why. There are all sorts of canned answers, but none of them are helpful. He chose not to. That's the only answer that makes sense. That doesn't mean He wasn't merciful.
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