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
