Thursday, May 7, 2015


Dear Nora & Braden,
These past couple of weeks have been hard on us.  All of us. 
Your sister has been violently screaming non-stop and though it's not unusual and you're used to it, I can see the stress in all of us vividly.  Braden, when you plug your ears and Nora, when you whisk yourself away to your room where you can escape, alone.  This is very telling of you both:
Braden finds a way, whatever it is, to trudge through a situation.  Nora retreats. 
It's intricate and beautiful to see really, the way you both cope with life and stress and pain and fear and sadness. 

The two of you have known since I have known that your sister is dying.  Though, we don't live as if she is.  Up until these last several weeks- Mabel, screaming or not screaming, seizing or not seizing, puking or not puking, has always gone where we go.  She is part of the life that we live in every way.  This has made our life both fulfilling and frustrating in most situations.  Our normal is all you know.  You do not notice when other kids seem sad or conflicted over the way your sister looks.  To you, she's just yours.  And that is the greatest gift I have learned in this entire journey.  To love the way that the two of you love. 
Unconditionally, without restraint, or restriction.  She is ours and that is that. 
We love her. 
I have always promised to be honest with you in this journey.  With every change, I have taken the time to explain it to you in a way that you both understand and accept.  We have walked it all together, no matter how difficult or hard it has been.  When Mabel stopped drinking a bottle, I explained that to you.  When she has new seizures, typically you recognize them before I have to tell you what's happening.  This week I had to explain to you that Mabel's tummy isn't working exactly the way it should be working and in stride, you gracefully understood and we moved on. 
It's a beautiful relationship that we have, guys, to be able to talk about life and death in an open dialogue.  Most families are not comfortable enough with their ideas about either to do so.  We are really lucky to have that with each other.  I have thought from the beginning and maintain to this day that it will be our honesty that will bind us together in these very hard times.  When you can be honest and real through life's most gritty and painful situations, you can walk through anything.  Feeling is key.  Expressing is a close second.  And any and everything that you feel or express is perfect and safe with me. 
Nora and Braden, your sister isn't well. 
She is living out the exact definition of 'suffering,' day after day.  That is horrific for me to have to write.  But I know you already know because again, you're living it with me. 
Watching, listening, Helping. 
We are doing everything that we can do to help make her comfortable.  Some days it works and sometimes it doesn't even come close.  It's incredibly painful; the ups and the downs.  It's also confusing for all of us, including you, because there are days when your sister looks really 'well.'  She appears beautiful and 'normal.'  But we have to try hard to remember that her normal is still not our normal.  There's still seizing and crying, biting and choking.  It's still awful even though we've grown used to it.  And sadly, over the last several weeks, even on the days when she looks remarkably well, her body has started showing signs of contradiction.  Inside doesn't match the outside sometimes. 
And I know that's going to be hard for you to understand.  I know that when she is smiling or laughing you can't possibly grasp that her body is slowly shutting down.  I know because I can't grasp it either.  My intellect fails me. 
One day, ultimately, I can only pray that you will look back on this and see the refining that is happening in our hearts.  I hope that you see my unwavering love and trust in God.  I pray that you understand mercy in a way that only we can because we are daily receiving it.  Mercy isn't at all how it's defined on this earth.  It shows up differently in our hearts.  There's no explaining it but I know you feel it.  I look at you, and I know.  I hope that one day you will reach out to God, not with resentment or bitterness, but instead with total and full surrender.  Total and full gratefulness. 
He is good. 
He has a place for your sister, waiting.  An eternal home where she will be well and rested.  I believe she will be whole in Heaven; whatever that means for her.  Because I think she is perfect now, just the way she is.  Not flawed or sick.  But perfect. 
So whatever perfection looks like in Heaven, that is what I believe she will be. 
There are many ideas of life and there are many ideas about death, kids.  And that is ok.  In more recent years I have started to be more curious and inquisitive about those things.  About people's ideas surrounding death and life.  I just read a quote today, in fact, by a young mother and author that simply says,
"There are as many ways to be dead as there are to be alive."
I just want you to know that you will encounter many people in your life that believe differently about life.  About death.  About life after death. 
Please be kind enough to listen and curious enough to explore that thinking for yourself.  No one is going to have walked in your shoes or shared your experience.  They will have walked their own path and lived their own life, leading them to their own conclusions.  Along the way it is likely that your hearts will hurt for people who do not share your own ideas or beliefs because you will want them to know of the peace and the love that you know.  You will want them to have a richness and joy about both life and death.  I pray you will at least. 
And if I do my job, as your mother, correctly, then you will feel those exact emotions about both.  So I pray that God helps me to help you right now and always in this journey with your sister that is so entangled in life (being alive on earth,) and death (being alive in Heaven, away from us.)
 During the week leading up to what could potentially be the last Mother's Day I share with all three of my children, I want you both to know:
 I have never been more proud or more grateful to be your mom.  And even with all the sadness and difficulty, I have never been more thankful to be able to care for and love your sister. 
She has always and continues to teach us so much. 
There are times when she is screaming, bub, that she stops and looks right up at you, knowing the noises that only her brother makes.  In the midst of her agony, you can bring a smile to her face.  That is a gift that God gave you Braden!  He equipped you to bring joy in sorrow.  Happiness in suffering.  I know that he will use you to do remarkable things one day because your spirit is rooted in Him.  I see the calm that washes over Mabel when you enter a room and I feel forever thankful that she has you as a brother!
And Nora, Mabel feels most safe in your arms. 
She adores you and calms for you.  I watch the two of you together and my heart literally beats out of my chest for the love you share.  It is everything I wanted for your life; the kind of devoted and secretive connection that only sister's have.   Though, if I'm being honest, sometimes I feel the most sad for you.  But I do pray that you never feel that way.  I pray that Mabel fulfills in you all that you desired from a sister.  You're absolutely perfect together. 
Nora, just yesterday you looked at me and said you just wanted Mabel to be safe and sound with me while you're at school.  I could see in your eyes the worry that you must carry every day.  You aren't alone in how you feel baby, in fact, a couple of days ago I walked into your brother's bedroom to wake him and tell him something,  he let out a sigh of relief followed by, "I thought you were going to tell me that Mabel had died."
My heart sank hard and fast but all I could do in that moment was reassure him, like I'm reassuring you now, that I will always be honest with you.  If I think that God is going to take Mabel to Heaven, you will know it.  We will be together.  You will never have to wake up without her.  You will not have to go to school worried that when you get home she will not be here.  I will make sure that we are all together and you are with her right up until we just no longer can be.
I promise, baby.  
I love you both more than I could every elegantly write. 
You are the heartbeat of my life.  Everything I have ever done or will ever do is because of you.  Though our load is sometimes heavy I want you to always remember that we don't have to carry it alone.  Two days ago, I laid my head on the shoulder of my mom and wept as she prayed over me.  I am a grown woman but I am thankful for the respite I have in my own mom, your nanny, even now.  I will always be with you to comfort you, strengthen you, pray with you and over you, and encourage you.  You don't have to walk any part of this life alone. 
I'm trusting in God. 
I'm leaning into Him.
 I'm here for you, always. 
We aren't ever alone. 
With Love,


L330 said...

Just. BEAUTIFUL. Your words pour from your heart. <3

God bless you all and surround you all and comfort you all.

Heather said...

I think I have been following your blog since you were pregnant with Mabel. While I hardly ever comment, I do pray for your sweet family after reading your posts. Praying for grace and comfort for you all now, and for your precious Mabel.
Your sister in Christ,