Random Thoughts a Good Ways In

About a year ago I wrote two posts that I still think about quite frequently: this one and this one. Today, a year later, in re-reading these two posts, I'm struck by a few things:

* Man did I have more energy (or youthful enthusiasm) a year ago to write stuff that elaborate. If anyone reading this is just beginning a journey with a special needs / terminally ill child, nothing and no one can prepare you for the exhaustion that will steadily creep and creep in. Our good friends from Minnesota who lost their boy to I-Cell a year ago told us it can take up to 3-4 years to fully restore your energy levels (that is, after the heart-wrenching passing you hope never comes, so it's not like you look forward to it). In re-reading those posts, it was obvious that a year ago we were still tapping into youthful (normal life) energy reserves. A year later ... ha ha.

* Inevitably, people can't relate, or they forget. There's a lot of truth behind the saying, "Out of sight, out of mind." When you don't see things, why would you continually think about them? That's why we pray, set goals, etc... to remind us of what's important and to work against our cognitive short-comings. I definitely feel like I'm writing this for people afflicted by ill health (their own or someone in their family's), and you folks know what I mean when I say that the realities of our situations prevent us from getting involved in normal things. The doubly bad thing is that the situation further decreases opportunities to connect with normal people (i.e. doing "the usual with old friends and family). And the triply bad thing is that when you do re-connect with them, you realize you're living different realities, and you can't catch up like you would after a normal break.

* I can't read at night anymore like I used to pride myself in doing (too exhausted), but I can usually stay awake to watch 10-15 minutes of a Youtube video/documentary so that at least I'm learning some things. Last night I watched the 15-30 minute range from this documentary about Buddha, who – let's be honest – was one of the most positively influential human beings to ever walk the earth (seriously watch it, it's good). Anyway, I've long been acquainted with his story, but watching it last night I realized that people facing terminal or life-altering illness (either themselves or those caring for those who are) are super Buddha's all on their own ... and maybe it was the actor in the documentary or my impatience for the tens of millions of princes and princesses I see on TV, the streets, online (etc), but I thought, "My god ... seriously!? You founded a religion based on overcoming naivety?! Like that's cool and all, but if it worked so well for you, does that mean we need a cataclysmic world event to snap everyone out of the fog?" And then I thought, "How much fog do I have left to clear," and tried to shift back to humble observer ... like Buddha.

* Lastly, my little girl is still with us, and I'm so happy. A year ago, I really didn't think she would be here this long. Amy's last post about the poem was amazing, really. I know it's just a contrived dialogue, but I can say, one year later, after meditating and studying and learning as much as I can about I-cell (which leads to DNA, which leads to molecules, atoms, quarks, galaxies, multiverses, infinity, etc.), my spiritual conviction is stronger than ever. Will we ever know what it is? No. Will we ever know that there is a god? No. Will we ever know that there isn't a god? No. Faith is all we have, baby. And my gut and heart of hearts tells me that Gabrielle has always been with us, and will be after she passes.

One year later, so much has changed. Our little angel. So much of everything, all at once, in large and usually painful doses, and so much better for it.

The Chosen Mothers

This poem was posted by one of the mom's in our Support Group for I-cell families and I just had to share it on our blog.  If it doesn't leave me crying, it leaves me completely breathless.  

The Chosen Mothers

By Erma Bombeck

Most women become mothers by accident, some by choice, a few by social pressures, and a couple by habit. 

Did you ever wonder how mothers of children with life threatening illnesses are chosen?

Somehow, I visualize God hovering over Earth selecting His instruments for propagation with great care and deliberation.

As He observes, He instructs His angels to make notes in a giant ledger.

"Armstrong, Beth, son, patron saint Matthew. Forrest, Marjorie, daughter, patron saint Cecilia. Rutledge, Carrie, twins, patron saint Gerard."

Finally, He passes a name to an angel and says, "Give her a child with an incurable disease."

The angel is curious. "Why this one God? She's so happy."

"Exactly" smiles God, "Could I give a child with an incurable disease to a mother who does not know laughter? That would be cruel."

"But, does she have patience?" asks the angel.

"I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she will handle it."

"I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I'm going to give her has it's own world. She has to make it live in her world an that's not going to be easy."

"But, Lord, I don't think she believes in you." 


"No matter, I can fix that. This one is perfect. She has just enough selfishness."

The angel gasps -"Selfishness? is that a virtue?"

God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take anything her child does for granted. She will never consider a single step ordinary. I will permit her to see clearly the things I see...ignorance, cruelty, prejudice...and allow her to rise above them." She will never be alone. I will be at her side every minute of every day of her life, because she is doing My work as surely as if she is here by My side."

"And what about her patron Saint?" asks the angel. His pen poised in mid-air. 


God smiles, "A mirror will suffice."

Happy Mother's Day Amy

You are the best mom a man could ever want for his kids. You are dedicated, loving, playful, and wonderful.

Dedicated.
You always make our kids your number one priority, and Gabrielle is the most incredible example. You have her oxygen sat machine by your bedside table and respond to it all night and every night. You dutifully ensure her meds are given every morning and every night, her central line thoroughly cared for to prevent infection, and tirelessly work with doctors, nurses, and health professionals to make sure she is happy and as comfortable as she can be. You go to bed every night wishing you could have done more, especially for the boys ... who love you to bits. When the hockey game is on, with 5 minutes left in the third period, you're thinking about how you can be a better mom for your kids, and can't understand why I'm not. You are the most dedicated mother I have ever met.

Loving.
Every mother loves their kids, but not every mother is loving. Your heart is so big and so wide-open for our children that I sometimes wonder how you do it. Sure you need your down time here and there, but you always come out of it wanting to cuddle, kiss, and care for all of your kids. Your heart has no bounds, and you have filled this house full of love with it.

Playful.
It's one thing to see your kids being cared for by their mommy, it's a complete other to see them playing with you, with belly-jiggling laughs that ripple through the house like a sunny day, even when there's not much sunny about the day or the circumstance. From random giggles to silly voices and sports games, you make our kids laugh and smile and feel good about themselves, and there's no way you can quantify that. It lightens life, and makes us all feel like a million bucks.

Wonderful.
You are just that: absolutely wonderful, and the best mommy our kids could have. No one could replace you and have the same amazing combination of strength, beauty, loyalty, and everything else. We love you Amy. You are wonderful. Thanks for being you.

A Brave Face

Well I've managed to do it.  I've managed to fool most of the people in my life and the latest one was my doctor this week.  A brave face.  I've managed to put on an incredibly brave face for 18 months.

I think I'm ready to start making sense of this. I think I'm ready to focus on healing.  I think I'm ready to slowly peel this brave face away and explore the pain and grief.  I think I can explore what caring for, loving, and one day losing a terminally ill daughter means.  Or can I?  Maybe this will never make sense to me.  Maybe losing a daughter or son doesn't ever make sense.

I'm sure I will look back on this in years to come and my pain will make sense to me.  Maybe it won't.  I don't now.

A special request and plea for help from other Moms in a similar situations:  How else do you do it?  I am exhausted.  I am grieving.  I am lonely.  I have a brave face, but I'm wondering if it's the best way to be?

Gabby Talk

 Gabrielle and James catching up on the day's events before bedtime.