Wednesday, July 24, 2013

Life and Death: Revisiting Asiri

Faithful readers may remember that I took the time 2 days before I delivered my son to write a blog post about the efforts being made to finish the maternity clinic in Asiri (a village in Ghana). I said that I would keep you all informed as the campaign moved along.

The campaign has been moving along, 
but it has stalled and Asiri needs your help!

In my last post regarding Asiri, I quoted my friend Jasmine Staff. Jasmine is in Asiri and sees the need for this maternity clinic firsthand every day. My words cannot bring the light that this campaign needs; not the way hers can. So forgive me, but the bulk of this post will be her words. 

"Two days ago there was a funeral in the village for a 22 year old Asiri girl who died from a botched abortion. The same day I helped deliver a healthy baby girl - Ama - in the dark on the floor of the TBA's home.

Both of these situations can be prevented or changed for the better. The girl could have employed family planning methods, thus preventing pregnancy and her death. The baby could have been born in a clean, well-lit, stocked clinic under the supervision of a doctor and trained midwife. This is the reality that Asiri's maternity clinic will create once it's built." 

I cannot ignore this. My plan had been to avoid writing and publishing this post until we were down to 4 or 5 days remaining - believing that the urgency at that point would help convince people to make their pledge to the campaign immediately. After all, how many times do we see a Kickstarter or Indigogo campaign and tell ourselves, "I'll do it later. It's still got 20 days.", right? But I can't do that. People are dying. 

Please visit the campaign and pledge what you can. There is just one week left and they still need almost $9000 in pledges. Think ahead: What about that friend or loved one who is IMPOSSIBLE to shop for? They're going to have a birthday at some point over the next 12 months. What about Christmas or any other gift giving occasion? Plan ahead and buy a killer gift from this campaign. Write a note about how this gift made a big difference in the lives of others and include it when you give the gift. It'll mean so much to the person receiving it. Charity is definitely the best gift for the person who already has everything. 

Of Autism and Earrings

What's the point of blogging if you can't expose your weaknesses on the days when your victories are buried beneath them? May as well let it all hang out...

I'm a confident mother, but if there's one thing that shakes my faith in my parenting skills, it's my eldest daughter's Autism. It brings out the things I have yet to learn; it showcases my impatience and my frustrations. Recently, a couple of friends were over at the house and the discussion turned to rites of passage and ear piercing. Zoey said that she wanted her ears pierced; she just wasn't keen to "all that pain". This did not sit well with me. My guests and I went out of our way to explain how temporary and slight the pain would be - that if she wanted her ears pierced, she should do it and accept that the pain would pass quickly. Our friends even went so far as to promise to go with her and to support her through it. She lit up and her decision was made.

Within a week, we found ourselves at the mall with my mother. I walked into Icing (which is like Claire's) looking for a hair accessory and Zoe saw the "Free Ear Piercing" sign. I told her that we could do it now if she wanted. She agreed. I asked her if she was certain; she was.

Or, at least, she was until we had everything set up and it was too late to turn back without forfeiting both the $50 for the sapphire earrings she'd selected and, much worse, sacrificing the tiny bit of bravery she's worked so hard to find within herself.

I had to beg, plead, and generally make a devil of myself in order to work our way through it, but we survived. I know that poor sales girl had thoughts of calling mall security to report me. I must have sounded like a mad woman. By the end, I was cradling Zoe's head in my hand with my face pressed hard against hers, whispering in a near yell, "Don't you let it make your decisions for you. You're so close. Don't let it take this from you." while she cried back at me, "I'm not brave. I'm not brave at all."

It broke my heart.

If she weren't an exceptional child and an exceptionally brave one, to boot, I doubt I would mind. But she is. She is so many wonderful things and the bravery she has shown when facing adversity? Oh forget about it! If I ever manage to grow up, I want to be just like my Zoey. We lose pieces of her life to Autism. It's unavoidable. There are things we must grieve. There are days when I'm reminded that she might never move away from home. I love having her near, but I mourn the life that she will miss by hanging on to us. In that moment at the mall, I experienced my own fears. I could not let her fail. It wasn't my battle to win or lose, but I could not accept the loss. I broke. I started making threats. They were empty and we both knew it. "I'll just have to hold you down and force it. You know I can.", "You don't want to have to tell people that you chickened out.", "You'll have to work off the money we wasted on those earrings by scrubbing the bathrooms clean with a toothbrush." I became an ugly person. As much as I wasn't myself, I have to admit that the ugly person I became is a part of who I am. Sometimes it's all too much and I can't just let it be. I struggle to identify with the girl my daughter is when she struggles.

9 days have passed and the pain has subsided. She loves having her ears pierced and looks forward to wearing matching earring and necklace sets. She's forgiven me. I have yet to forgive myself. I will find a way to work through it and accept my own apology, but it will take time. In the meantime, I will go out of my way at every opportunity to let her know how proud I am of her. 9 days ago I told her that bravery is not the absence of fear, but rather the decision to succeed in the face of fear. It's my task now to remind her of that and to remind her that she did show bravery; that she is brave.

There are so many things that Autism can take from us, but it can't take the bravery she has already shown. It's a small, dirty victory, but it's a victory. I'll take it.


I'm willing to accept whatever judgements people may have for me. I've been facing them for 12 years. I know that I'm doing my best and that as much as people may think they know what this struggle is like, unless they've raised a child on the spectrum themselves, they don't know. They can't. And that's good. I wouldn't wish it on anyone.

All I ask is this: Before you post a hateful or angry comment, please go to THIS LINK and try to understand that Autism has many faces and almost none of them are what you may think. Thank you.

Tuesday, July 23, 2013

Milking the Bear

July 11, 2013

This morning I had a conversation with a good friend about whether or not I needed to obtain a state ID for my infant before we travel. She assured me that his birth certificate would be plenty of ID and I replied that this was a relief because the idea of taking an infant to the DMV sounds like about as much fun as trying to milk a bear. At the time, the imagery was a touch amusing and incredible appropriate. As the day as developed, however, it’s become more of a tragic summary of the rest of my morning.

Doing anything during a flare up of a neurological disorder: Difficulty: Milking a Bear.

First bear of the day came when I went to my doctor’s appointment to address the aforementioned neurological disorder. The short version: Over the past couple of days, my entire body has been in excruciating pain that does not respond to pain medication at all. Imagine sticking a fork in an electrical outlet... all day... while exclusively breastfeeding a ravenous 4 month old... and trying to relaunch your business... while you’re dieting. I had good reason to want a solution for the pain. Unfortunately, because I’m exclusively breastfeeding, my options are few. Temporary plan: Draw blood. Test urine. Pray surgery isn’t needed. Okay. Fine. Let’s do this.

Having blood drawn by a new (and nervous) phlebotomist when you have a rare blood disorder: Pain Level: Milking an Angry Bear.

The line for the blood lab was long, but not new to me. Having a rare blood disorder means getting used to lines for labs. It’s pretty common. I called my mother (who was kind enough to watch my children - thus saving me from having to wrangle monkeys while dealing with bears) to tell her to go ahead and use some of the frozen breastmilk in the freezer because I was going to be stuck waiting for awhile. When I was called back, I sat down, exposed my arm, explained that the largest vein rolls to the right and the details of my blood disorder. The poor girl almost started crying. I could tell it wasn’t just me - her day had been full of bears, too. Cranky, hungry bears. I told her I was used to needles and I’d be fine. No worries. Except that her nerves led her to jab a needle into two of my nerves and then to push through the vein, miss the vein, and dig around before finally finding a vein that would work. I didn’t want to make her day worse, so I tried to meditate my way through it. I think I would have been convincing if tears hadn’t started silently running down my face after she hit the second nerve.

Accidentally driving past a major PTSD trigger: Stress Level: Trying not to Remember a Previous Day Full of Bears.

Someday I’ll elaborate on this. Not today. Someday. For today, I’ve already thought about it too much.

Picking up restricted medication without your ID: Difficulty: Trying to Find an Invisible Bear.

I got to the grocery and dropped off my prescription. I set about picking up a few groceries while I waited for it to be filled and felt like death as someone else’s baby screamed for 15 minutes in the check out. Let me be clear: I have no problems with babies crying. But when you’re breastfeeding and you should have been home an hour ago for a feeding? Not good. Any baby cries and BOOM. You’ve got a shirt covered in milk and a small amount of pain while you try to make it stop. After checkout, I thought I was home free. Got to the rx pick up window and... no drivers license. I realized my husband has been holding it for me since Tuesday.

Driving home during a PTSD-related anxiety attack without the medication you were supposed to pick up and without your drivers license: Difficulty: Trying to Avoid Police (or, as truckers tend to call them over the CB, Bears).

Long story short, I made it. I nearly burst into tears upon entering my house, but I made it.

On days like this, I miss Xanax and weekly therapy.

Long Live Motherhood! (I wouldn’t trade it for anything in the world.)