Not Everyone Has An Easy Start

I have to admit that both of my girls had a fairly easy time with birth. Cordy was a scheduled c-section during the 38th week because she was determined to never come out and had arranged herself in such a way to guarantee that. She was unaware that doctors could forcibly remove her by surgery. I still remember how pissed off she was at being dragged out into the cold air, and I’m not sure she’s ever completely forgiven us for that.

Mira was an extremely uncomplicated birth, other than the fact that she waited a full week past the due date to make her appearance.

I’m lucky that both of my girls were born healthy, requiring no assistance in breathing or feeding. Some aren’t so lucky, though, and have to fight much harder for their place in this world.

If you haven’t met Mama Spohr (Heather) yet, you should really take the time to go read her blog. She has a beautiful little girl named Maddie who had a very rough start to life. Maddie was born at 28 weeks after Heather had been on bedrest for 19 weeks because of pregnancy complications.

Heather had PPROM, which is an acronym for Preterm Premature Rupture of Membranes, which is medical-speak for premature baby coming now – NOT GOOD. Maddie was rushed to the NICU when she was born, where the medical team fought to keep her alive. At times her lungs would rupture with tiny holes, forcing air into her chest cavity. The slightest touch could overstimulate her and send her heart rate plummeting downward. (Note: I’ve seen this happen in the NICU – it’s amazing how strong yet delicate preemies are!)

More than once Heather was told her daughter would not survive. But thanks to a well-trained team, a state-of-the-art NICU, and of course Maddie’s strong-willed spirit, she’s here today.

One reason I agreed to be a March of Dimes Mom is that I stand firmly behind the research and advances they have helped make happen. There was a time when nothing could be done to save a baby when the mom suffered a PPROM, and preemies under 32 weeks had a small chance at survival. Now NICU doctors and nurses are saving babies born at 23 weeks gestation. As the technology improves, outcomes will improve also, and hopefully fewer babies will be born too soon.

Heather is participating in the March of Dimes March for Babies on April 25 in Los Angeles. She’s already done an amazing amount of fundraising, and at this very moment is only $140 away from her $2000 goal. To help get more donations, she’s giving away an all-in-one printer and Kodak digital camera – every dollar donated counts as one entry. Her contest ends tonight, but you can still donate beyond today, too.

I want to see her surpass her goal. This money goes directly to help fund research so children like Maddie get that help they need to survive. And even if you don’t have the money to spare, check out her blog and cheer her on, OK?



Give 30 Seconds for Gwendolyn

I get a lot of e-mail each day. Please don’t think I’m bragging, because in no way am I proud of the spam I have to delete from my Inbox continuously. Some of the legitimate e-mail includes PR pitches (some of which also end up as spam), asking me to review a product or post a press release. My favorite e-mails are from blog friends or even complete strangers who took the time to say hi.

And then I get an e-mail like the one below. A complete stranger, asking so little, with so much to gain from our effortless act of signing a petition. How could I not help? Please read Victoria’s e-mail and sign the petition to help promote Spinal Muscular Atrophy awareness and accelerate research to find a cure.

From Victoria:
———————
Dear Christina,

I recently found your blog via a mother who follows mine. I immediately bookmarked you and am thrilled to now have your website at my fingertips. Although it may seem random, I am writing to you because I feel drawn to your writing voice and I thought perhaps I may find a advocate in you. And, frankly, I am desperate.

I have a beautiful 16-month-old little girl. She is a happy baby with a fighting spirit — and it is a good thing because she has already been through enormous challenges. My daughter, Gwendolyn, has a degenerative and terminal disease. Over the last eight months, I have grown accustomed to feeding tubes and medical machines filling her nursery. I have even come to terms with the knowledge that I will most likely lose my baby before she reaches the age of two…well, some days any way. I am hoping that you will consider helping me raise awareness about her little known but all too common disease and highlight a petition my husband and I started.

My daughter, Gwendolyn, was born perfectly healthy October 2007. Unfortunately, at 9 weeks old she became very ill and was eventually diagnosed with Spinal Muscular Atrophy or SMA, the #1 genetic killer of infants. In fact, 1 in 40 people unknowingly carry the gene responsible for SMA. It is terminal. It is degenerative. It is cruel. Gwendolyn will never walk, never sit up unassisted, and spends most time completely flat where she is most comfortable. Some days I can not pick her up or snuggle her because the movement is too much for her. She may never speak, although we are hopeful. And while she currently has some arm movement, it seems to weaken every day. She needs help to breathe and even to swallow her own saliva. However, her mind is perfectly fine and already she wants so desperately to do all the things that her failing body hinders.

Although, Gwendolyn’s disease currently has no treatment and no cure, the National Institutes of Health (NIH) has described SMA as the disease “closest to treatment” and researchers claim they are just a few years away from finding a cure. And, there is landmark legislation, the SMA Treatment Acceleration Act, currently sitting in Congress that, if passed, would provide researchers the resources needed to make that last crucial step. In addition, SMA research has already benefited the research of other diseases, such as ALS/Lou Gehrig’s, Parkinson’s, Alzheimer’s, Duchenne Muscular Dystrophy, Tay Sachs, and many others. In fact, it is because so much is known about SMA that the national organizations consider it a “model” disease from which so much can be learned and put toward saving countless lives.

Having been initially told that there was nothing we could do but go home and love our baby, it is empowering to know we are so close to changing this outlook…and, perhaps, saving our daughter’s life. Thus, this summer my husband and I joined the battle being waged by the SMA community nationwide and created an online petition – www.PetitionToCureSMA.com – as a grassroots effort to drum up broad national support for the SMA Treatment Acceleration Act. Our petition has received backing from the SMA community – FightSMA and Families of SMA – and to date has over 49,000 signatures from all 50 states and many countries. The petition has also been a useful tool in raising much needed awareness of this infant killer.

We are just one family fighting to end this cruel disease, but with the support of others it is within our reach. So please, as a parent, I am asking you to consider signing the petition: www.PetitionToCureSMA.com (it takes 30 seconds) and helping us promote SMA awareness. With your support, thousands of children can have the future they so deserve.

You can learn more about Gwendolyn on our blog: www.GwendolynStrong.com. Here is a petition promotional video you are welcome to post: http://www.youtube.com/watch?v=U_pL0kMvlcg

Thank you for your time and consideration.

Sincerely,
Victoria — Gwendolyn’s Mommy
www.GwendolynStrong.com

—————–
Here is a bit more about SMA:

  • SMA is #1 genetic killer of children under two.
  • SMA is estimated to occur in nearly 1 out of every 6,000 births.
  • The gene that causes SMA is unknowingly carried by 1 in every 40 people or nearly 7.5 million Americans.
  • The life expectancy for infants with SMA Type 1 is two years.
  • SMA is a degenerative disease that destroys the nerves controlling voluntary muscle movement, including breathing and even swallowing — these children are otherwise perfectly healthy and “normal” — making them trapped in their own failing body.
  • There is currently no cure, but the National Institutes of Health (NIH) and the National Institute of Neurological Disorders and Stroke (NINDS) have selected SMA as the disease closest to treatment of more than 600 neurological disorders.
  • Researchers estimate that we are as close as only a few years away from finding a treatment and/or cure.


I’m Famous! Well, Sorta…

I’d like to welcome everyone who is visiting me from CNN today. And for my regular readers, go check out the CNN article – it’s got useful information for nearly anyone who isn’t self-employed. Of course, I thought that someday I might be featured on CNN for something I’d accomplished, and not because I have no health insurance. But hey, gotta gobble up those 15 minutes of fame somehow, and it’s better than being that guy on TV in his undershirt, holding a beer and talking about how the tornado tossed his trailer around like a tin can.

As a follow-up to that article, I’ll add that we tried to buy private health insurance when Aaron began his contract job in November. I researched, got advice from those who buy their own insurance, and then settled on a provider. After filling out the mile-long application, where I had to list every stuffy nose we’ve ever had, including full dates of illness and symptom, we then endured weeks of back-and-forth with the insurance company.

They insisted on bloodwork for Aaron because it had been too long since his last routine tests. The CNN article recommends not having tests run when you have a limited time on insurance, because it could hurt your chances of getting private insurance. However, I can tell you from experience that it doesn’t matter – they’ll get the information one way or another.

Apparently they found something in his tests, but wouldn’t give us the details. (Nice, right? You’d think we have the right to know about our own health.) Instead, we were told that he was denied any prescription drug coverage. He takes no prescription meds currently, and only took one for a short time in the 11 years I’ve known him. There were also several “pre-existing conditions” based on everything we reported to them, none of which were covered for the first six months. Seeing how I was planning to need this insurance for a year at the absolute most, I thought paying that much for next to nothing wasn’t worth it.

So at the moment our family has no health insurance, and unless we can find another job by the end of the month, we’ll be unemployed again. I’ve been saving anything we can spare from each paycheck to help us pay bills the next few months. Cordy and Mira can go back onto the SCHIP health insurance plan next month, too. I graduate from nursing school in June and will hopefully find a job with full benefits quickly. Then we’ll be back to where we were before Aaron was laid off last June. I can’t wait for that point – I’ve never been without health insurance before this, and this has been one of the most stressful times in my life.

I hope the layoffs across the nation begin to slow soon. No one should have to go through this stress, and no one should be without basic access to health insurance in this country.



I Will Never Survive Elementary School (Alternate Title: Kids Are Cruel)

With the layer of snow still covering the ground, and two little girls with pent-up energy from being cooped up for days, we ventured out to the mall playground yesterday. (OK, so it was also so I could do a little shopping, but that’s beside the point.)

Aaron watched the girls play for about 45 minutes, and then I took over for the last bit. Not long after I sat down, Cordy came up to me and sat on my lap. “Can we go home now?”

Surprised by this request, I said, “Yes, we can go home as soon as daddy comes back.”

At this point a little girl walked up to us and said to Cordy, “Come on! Your red car is back! Come play!” At first I wondered what red car? She doesn’t have a red car with her…

Then Cordy’s face brightened. “OK!” she exclaimed, taking the little girl’s hand as she led Cordy to the other side of the play area. It was such a sweet scene to witness – this little girl was asking Cordy to come play! My heart grew three sizes in that moment as I imagined Cordy someday having lots of friends and charming other kids.

I watched them go up to an older boy in a brown shirt (he looked about 7), and he then produced a shiny red toy car from behind his back. He took off running, holding the car up high. The group of 4 or 5 kids around him ran after him, including Cordy. The other kids looked around 5 or 6, so I wasn’t concerned that an older kid was with the group.

The thought crossed my mind that this older boy might be teasing the other kids a bit, but I quickly let that thought fall away when Mira climbed onto my lap for some attention. Cordy was having fun with friends, so I was happy.

A minute or so later, I checked to see where Cordy was in the play area. At first I didn’t see her, but I saw the group of kids she was with. They all seemed to be leaning in towards something up against a play structure, crowded together and laughing. I saw the older boy lower his hand, with the red car in it, towards the kid I couldn’t see, saying “Here, you want this?” and then yank it back quickly, shouting “NO!” at the kid and laughing. The other kids roared in laughter in response.

I started to get a sinking feeling, which was then confirmed when I heard Cordy’s high-pitched shriek. I shifted my position and across the play area saw Cordy, sitting on the floor and cornered by this group of kids, reaching up and pleading to play with the car as the boy again thrust it in her face, only to pull it away as she touched it, shouting “NO! It’s MINE, dummy!” in her face and laughing at her as she shrieked again, half-covering her face and looking confused. The other kids were egging him on, saying, “Do it again!” and shouting at Cordy, “It’s not your car!”

At that moment my heart shattered into a million pieces.

A moment later, sensing my heart was no longer in any state to put up a fight, my rage began rising from my gut on a conquering march to my brain.

I stormed over there, with what little logic I still had in my head repeating a mantra of Don’t kill the kids…don’t kill the kids… Not trusting myself to say anything to these little monsters, I simply walked past them and scooped Cordy into my arms, saying, “C’mon, let’s go play over there. You don’t need to play with kids who are mean to you.”

The older kid, realizing the jig was up, and thinking himself smooth and savvy with adults, tried to act like nothing was wrong. “She kept asking for her car, but it’s mine. She thought it was hers.”

Again, I didn’t know what to say in that moment. I didn’t want to tell the kids she has autism – they probably have no clue what that means, and I didn’t need to further alienate her from them. In a pinch, I came up with, “Well, she doesn’t always understand that a toy isn’t hers. She’s not as old as you might think she is.”

“Well how old is she?” the little girl who brought her back to the bullying asked me. “Is she six?”

Apparently my Amazon child had fooled people once again. “No, she’s four.”

The little girl seemed unimpressed. “Well, my little sister is four. And she knows that some toys aren’t hers.”

OK, engaging these kids has clearly failed. Time to just make an exit, I thought. But then the older boy – that same chubby little ringleader who thought he was so much older and wiser than other kids, yet was teasing my daughter mercilessly – had to add one more statement to prove that he understood child psychology.

“Oh, I understand!” he cooed at me. “Little kids and babies don’t get that there are toys that don’t belong to them. You know…like dogs! She’s just like a dog – doesn’t know what is hers and what isn’t.”

At that point my rage was screaming in my head One swing! Just let me have one swing at him!! Meanwhile, I had ceased to breathe or move as I stood there and stared at him wide-eyed, as if he had two heads, one of which was a barking dog. Even my logic had given in, pointing out, Someday that kid is going to get his chubby little head knocked into a wall, and he will completely deserve it.

Finally wrestling my voluntary muscles back to my own control, I turned away from the mean kids and carried Cordy back to the other side of the play area. She buried her head in my neck, asking to go home. Aaron wasn’t back yet, so I checked to make sure Mira was still OK and sat Cordy down next to me.

“I want my red car,” she whined.

“Cordy, that car wasn’t yours.” I reminded her.

“It wasn’t? I want to go play with my friends.”

Damn, she didn’t even realize they were teasing her. “Cordy, those kids weren’t your friends. They were being mean to you.”

Cordy looked confused. “They were?”

“Yes, sweetie. They were teasing you and laughing at you. They weren’t being nice.”

“Oh.”

We’re not even to kindergarten yet and I’m already stressed out about bullies. I want Cordy to have friends and be happy, but as it stands her social skills aren’t very strong and kids, who pick up on any weakness, are quick to exploit hers. The only comfort at the moment is that she has no awareness that people are being mean to her – she is spared the hurt and the pain of being rejected by others. (While I currently bear the brunt of it.)

I know I can’t protect her forever, but the social world of children is a harsh and cruel one, often shaping a person for a lifetime. I should know – I was a misfit child who endured being the outcast, and the scars still burn. It’s probably because of my past that I worry so much about my daughter who isn’t always on the same plane of reality as the rest of us. Winning popularity contests isn’t my goal for her, but I do want her to have friends and know how to handle situations where other kids try to hurt her.

At this point in parenting, I feel lost. We’re entering a phase of her life that I didn’t do particularly well with, and she has additional challenges to make it even more difficult. I can’t be there to pull her out of these situations all the time, and I can’t even think of how scenes like this would end without me stepping in.

(And before anyone asks: No, I don’t know where their parents were. A group of parents sitting right by the gang looked on without any concern. The mall play areas lean towards a Lord of the Flies atmosphere on weekends when older kids aren’t in school. The majority of concerned parents have very young children, and hover over them continuously.)



We’re All In This Together

With the inauguration just two days away, I’ve been thinking a lot about what this new administration will bring, and how it will affect me. One thing I really admire about Obama is his continual message of unity and the need to work together. His Renew America Together initiative is especially impressive. The message is simple: things are hard right now for much of this country, and if we’re going to have better days, we need to find a way to work together again to improve our communities.

It makes sense to me. Our sense of community isn’t what it used to be. I know very little about my neighbors. Trying to pull them all together to fight a development behind us is hard to do. And someone who used to live in our community was the one breaking into our homes and stealing our things. No one watches out for their neighbors, and no one cares about their neighbors’ hardships.

As a kid, I knew everyone on my block. Most of the neighbors knew each other and spent time talking as friends would do. They visited each other all the time. If someone had a tragedy in their family, neighbors would bring them food and offer words of comfort. Our school collected good-condition used clothing each fall to distribute to other kids in our town who needed them.

I want my daughters to know the importance of helping others, too. We’ve received help from friends and family ever since Aaron was laid off, and we’ve done our best to help others with what we have. Boxes of old clothing recently went to Goodwill, serving the dual functions of making more room in our home as well as providing income for a great charity.

Right before Christmas I also brought a large donation of diapers, formula, a dollhouse and Johnson & Johnson baby products to our local YWCA family shelter. Just this past week I received a very nice letter from them, thanking us for providing items they so desperately need.

We’re going to continue all of this in 2009. In re-organizing Mira’s room yesterday, I found more clothing that we no longer need. Continuing to give items we no longer use or need to Goodwill or other charities helps others, but also simplify our lives as well. I’ll also continue giving to the YWCA family shelter – with the recession tightening its hold more each day, I know this organization will need any assistance we can offer to provide for the increasing numbers of families seeking out their help.

I do believe that if we all made some effort to better our towns and cities, we’d see some amazing changes. It’s about time we all came together for something other than a national tragedy.

What about you? What will you do in 2009 to help your community?

This post was written for Parent Bloggers Network as part of a sweepstakes sponsored by The Quaker Oats Company.

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