Tuesday, February 21, 2012


During what should be a quiet, intimate moment with my husband, I almost always find myself curled up in the fetal position and crying hysterically about our girl in his arms.  We are so busy with life.  We find ourselves running the race together of accomplishing day to day tasks; handing off children as we say hi in passing.  So when we finally get ten minutes to just lay together and talk- the overwhelming sadness that lies beneath escapes onto his shoulder, leaving proof behind in the black streaks that pour from my make up onto his shirts.  

This weekend was good.  This weekend was also overwhelming.  
Birthdays are starting again.  All of the 'babies' that were born within months of each other are turning two.  We celebrated this weekend with a couple of parties.  If I said that it wasn't hard I would be lying.  It is, of course hard for me.  Sometimes I don't want to hear that "Mabel is just Mabel and her party will be perfect for her."  Sometimes I just want to imagine what a normal party would look like for my normal child.  And that is what makes events like this weekend so p.difficult is that it draws out the reality and pulls me from a very safe, very comfortable denial.  

You see, I have isolated our family this winter.  Mainly because it has been flu season and we can't risk Mabel getting sick.  We've been so blessed that she has been well.  But I find that in my isolation, I get very comfortable with our situation and sometimes forget that outside of these 4 walls, other children are growing and progressing the way that they should be.  So when I, like a zombie, join the land of the living and growing I feel this powerful feeling of, "Oh crap."

It's great for me to see the other kids.  I am so unbelievably thankful that they are well and that they are growing!  I would never want anything different-not ever.  
But I forget how bad I still yearn for those things for Mabel.  And no matter how many times I hear that it will be worth it when Mabel finally does do certain things, I can't help but think that it might not be as elating as some people would like to think.  Because in reality, it will still be delayed.  It still won't be 'as it should.'  It's still very difficult.  Everything is peppered with a little bit of sadness.
I'm not sure that I have really felt the true despair that I did this weekend when I realized that I still really do long to see Mabel stand.  Crawl.  Walk.  
And to let go of those things is extremely difficult.  The realist in me has let it go [in my mind.]
The mommy in me still yearns and longs for those moments that are inevitably not happening...at least not for a very long time.
if ever.

Daniel saw photos of Braden wearing his pink leotard and head band around the house and I asked him to please just laugh.  Please just let yourself laugh and enjoy them being little.  The things that he is doing--they are normal, kid things.  I am desperate to just let the redheads do whatever it is that they need to do to express themselves while they are little and are able to do so.  


The truth is, they will grow up quickly and the reality of their life is that their baby sister is sick.  She has several complex medical issues and we have no idea why.  The reality is that these older children will only be little for so long and then they will have to be part of a really rough, confusing, hard life.  For now, they are little.  Braden has two sisters and loves to wear leotards when they do gymnastics.  
And that's ok.  It's all ok.

I cried into Daniel's chest and I find myself saying "who cares if our kids eat chips for breakfast and doughnuts for dinner?  At least they can eat!  I'd give anything to just give Mabel an oreo and see her enjoy it..."
"What does it matter if he's dressed like a girl?  At least he can express himself.  At least he can bend his body to do a somersault.  At least he can laugh and enjoy the little things in his life..."

I don't want to define everything in my parenting of the older children by Mabel's "disabilities" but I do want to keep the strong perspective that the Lord has worked so hard to show me this year.  Some things just aren't as important as we would like to think they are.  Sometimes it is not the outer things that need affirming as it is the things that we learn in our hearts and feel so deeply.  Sometimes it is not about birthday parties to celebrate another year in life as it is about celebrating life in general.

I know that when I look at  my girl and she burrows her head into my neck, I am feeling every part of that.  I know that I am not missing one smell, one giggle, one wink.  I am feeling every bit of the love that she exudes and the love that she brings me.  

That is the salt and pepper of this dance I am still part of with Mabel.
The salt is so much joy, growth and pure exhileration just by being her mom.
The pepper is the sadness that accompanies most of the things that also come just be being her mom.

So I am still learning-
learning to feel all that I feel in the journey and to be ok with it.  
learning to accept that in so much of the joy there will also be a little bit of sadness.
learning to let my kids be little [more now than ever.]
learning to let go of the way I thought I would think, live or parent [because it has all changed.]
And learning to taste the spices in all their goodness and know that they are both for a purpose.
For now.  And probably for always.


Debbie said...

Ramee, I laughed so hard seeing Braden in his leotard and headband.
He looked like he was having a great time. I miss seeing Nora, Braden and sweet Mabel at church. I hope they can come back soon.
Praying for you and your family always.
Miss Debbie

Andy and Jenni said...

Our daughter, Celia, died last month. She was four, and had Batten Disease. Much of what you write here resonates... the sadness that comes from looking at new dresses meant for healthy little girls to twirl in, the gratefulness for lessons on what matters (time to sit and soak in your kids) and what doesn't (donuts for dinner!), heartache and happiness that dwell together through each day.
We visited after the RARE e-mail introduced us to Mabel, and we'll look forward to coming back to keep up with her your family...