Several of you have written, "Where are you?" you ask.
"You aren't blogging," you say.
"Is everything ok?" you ask.
And my answers are as follows: I'm really good. And you want to be where I have been.
I have been tucked under quilts with babes. I have been sitting outside while the redheads play. I have been reading a new book. I have been out to dinner with girlfriends.
I have been disconnected from life online and tapped in to life as it's happening. Real, intentional life. It has been refreshing. It is so needed.
The kids got a safety and karate lesson from Stevie's dad, (my mom's cousin, Steve) and we so enjoyed their company. Val and I had a continuing hard talk about decisions and choices that we have to make as moms to 'terminally ill' children. It's difficult to even come back around to that reality sometimes but when I'm with her, I feel energized and strengthened for the very difficult task ahead of me.
Strength is gained from time and experience, I believe. It's much like wisdom in that you can yearn for it and even seek it out but until you are handed a situation where you must use it, it's presence is irrelevant.
Now more than ever before, I need both like a daily prescribed medicine. I wake up and I swallow my strength pill followed by my wisdom enema. It's necessary or else I will not thrive.
I believe I will perish.
Strength and wisdom...must have more.
In the balance of strength and wisdom there also needs to be some serenity and comfort. A place where we can escape and realize that it is ok to be vulnerable as well. In the vulnerability we find there is room for even more growth, and even more flexibility within ourselves. It's a divine gift, really. This week I have tapped into the latter mechanism and flourished in the land of serenity.
There is nothing like seeing your kids carefree in the middle of the country; heads thrown back in laughter and innocence. There is nothing like wanting that for yourself and pleading to find it-somehow, someway.
They're magical, these little people.
Maddening, frustrating, difficult and often impossible but absolutely magical. I watch them in total awe and am amazed at what they are able to accomplish and experience in just a few moments of total freedom. They aren't bound by expectations or insecurities. They aren't afraid or limited. They are free and wiling to learn and be taught.
I am captivated. I mean what if we were all so willing?
Many times I forget that these two (shawn & harper) are Mabel's age. Many times I forget the differences and merge only the love and acceptance that all of the children show Mabel. God has gifted each of them with such an intricate and wonderful knowing. Each of them love her delicately and take care of her fiercely. They are too young to understand the concept of "no" yet I absolutely feel like they understand the concept of "unique." They have bridged the gap for me; the gap between sad and lonely to vibrant and living.
Many nights I forget that Mabel is sick. I don't think about it much anymore. She cries 10 hours a day and I have sickening dreams about how I will plan her funeral and yet while I'm holding her I forget. She is just my baby.
But tonight I swaddled her tightly and held her against me as she nestled and cried in my arms. We were in her room and I looked over at her crib as the realization hit me-- I don't believe she has ever even sat up in it. Not once.
And then I remembered.
And yesterday as I spoke with my mom on the phone and we talked about ways we could help Nora and Braden with their grief in the future, I realized that most other parents aren't doing this. They are not talking about this. They are planning family vacations and saving money for those trips. They are thinking about college funds and future weddings. We are thinking about the kind of debt we will be in after we bury our child and the kind of therapy our other children will need to even be a hint of emotionally stable as they grow.
Then I remember.
I sometimes remember when I get a silly and self-righteous email from an old friend still trying to debate the Bible and plead it's scripture to me.
I wonder to myself as I read through it if she forgets that I am a Christian and if she is still living on the same planet that I am? Did I behave this way at one time also?
I know I did. Shame on me.
What a true freedom I have found in Christ. What a gift I have been given because of this precious Mabel girl. It is completely worth it to be as close to my King as I am today.
[I hope you've been changed as well. That would make it doubly worth it to me.]
But let me say it again: Day to day, I don't remember she's sick.
I am living. I am completely and totally in love with these moments that come and go so quickly. I feel myself deeply enchanted by their beauty. I find myself overwhelmed that I get to step into the lives of these children and help mold them. I am humbled and honored that their mommy's love me enough to do so.
So where have I been?
Around a campfire. Seeing a 2 day old baby alpaca. Seeing a very pregnant [and very beautiful/graceful] friend. At spin class (my new favorite). Wrestling/flirting with my husband on the couch.
I've been doing laundry and dishes and taking lots of pictures (of my kids and everyone else's). I've been bike riding and walking. I've been staying up late and sleeping in later. I've been homeschooling with Nora and snuggling with Braden. I've been dancing with Mabel and talking with Jeni.
I've been living. Really, truly enjoying each day and just flat out living them as they come.
There are moments when my heart is broken. Sadness creeps in and I think about the reality that looms. Everyone says it, "none of us know how long we have to live. something could happen to us at any time." And that is true.
But what is also true is that I have to live every single day knowing that unless some other tragic event happens to take her first, NCL will take the life of my daughter.
That is why I wish it were possible to overdose on strength. But it doesn't happen that way. It comes slowly, gently, steadily.
So in the meantime, I curse this & every rare disease in my head and I pray that I can really enjoy the way Mabel's feet smell in her 12 month winter jammies instead of feeling sad that she's still in them. I pray that I will always love to kiss her tongue as it hangs from her mouth and I thank God that I have grown to love the smell of her g-tube and her formula. I try really hard to live every day as normally as possible not only for the other kids, but for Mabel too.
While she is here and I am the mom that God chose for her, I want to be the most authentic mom I can be.
And this is me.
I want to be able to share life with the people around me and I want that for Mabel and each of my children as well. So when adjustments have to be made because Mabel's disease calls for that to happen, we will adjust accordingly. But for now, I still want to make sure that she and I do this thing the only way I know how and that is by living.
There is nothing like it.
This life is the only shot we get to be great. It's a roller coaster that is upsetting and exhilarating all at once which is all the reason to want to strap in tightly and take the loop with courage.
Most of my friends have strapped in beside me and I am incredibly grateful to not be in it alone.
We all have a little more strength, wisdom, grace and courage when the people that love us are surrounding us, dont you know?
So be around someone that you love tomorrow. Whether they need you or they don't is not even a question. Just go where they are and be with them. It changes everything.
I hope I answered your question.
I am alive and have been living.
Tonight I'm blogging from a dark, cold house that feels unbelievably warm and cozy. I am tucked in the little nook that is my room on a new bed frame under my favorite quilt. Nora just finished her last bit of school work because I let her play outside today if she promised to work hard tonight. She did and I'm so proud of her. Mabel just woke up and screamed the entire time that I wrote this. I took a break to rock her and sing a song but came back to writing so she could try to get back to sleep. Braden's hair is still growing, although we did get a trim in around the ears.
All is well.
Sometimes it's messy. Sometimes there are tears.
But it's true and real and ours.
Where have you been?