Policy

This past weekend was the last installment of the Early Intervention Partner's Training Program I'd been attending. I feel privileged to have attended, and while Emily is at such an early age.

So now the question is, how best to put what I've learned to use? I have a few ideas clinking around my head, one of which is to use part of this blog to share EI Policies, experiences. Educate. Not only those who stop by to read the posts, but to further educate myself on what my role is in life, as the mommy to a special needs daughter. So the bargain I've made with myself is, for every post I make about EI, be it a concept, definition, step, experience, I have do something more with the post. In other words, the blog post enough isn't enough. I have to convert it into an action.

My plan for this week to was write about policy, a term we discussed on Saturday's meeting. We spent time discussing public policy, but the idea of *policy* can be extended to a lot of things. Dictionary.com defines policy as "a definite course of action adopted for the sake of expediency, facility, etc"

Policy should benefit someone or something, such as the group, people, or philosophy the policy's organization represents. Sometimes that's not the case. For example, it was against our health insurance policy to cover out-of-network care...but after a long battle and a good fight, they adjusted their policy for our situation.

Sometimes a policy makes no sense. My sister Kathleen is a marathon runner. She contacted the National Spina Bifida Association to have them be a "Charitable Organization" through the New York Road Runners, which would allow for some runners to raise a minimum money for the SBA in order to run in the 2010 ING NYC Marathon. We have been anxiously awaiting the NYRR's response, which was almost a month overdue.

Yesterday, the SBA heard from NYRR: They were accepted!!!

UPDATE on Wed 5/19: SBA HAS DECIDED TO ACCEPT, AND WILL BE A CHARITY ORGANIZATION FOR THE 2010 ING NYC MARATHON!!!

!!What a wonderful success story of fighting for what you want! Details to come as we have just received word from Cindy Brownstein herself (umm, President and CEO of the National Spina Bifida Association!), and they are willing to make this happen.

This just goes to show that persistence and sharing your passion pay off. I cannot express how excited I am!!!

PS-This isn't to say I scrapping the foundation idea! I would love to see Spina Bifida awareness at the level of other major causes. We are limitless, and while it may be lofty, it's lofty to crawl when your legs don't move, stand when you can't bear weight, walk when your prognosis says otherwise, and SB kiddos are doing these things every day.

Mother's Day

Mothers day is fast approaching. Last year I was a nervous expectant mother counting days until we would be meeting Emily. I received many Mother's Day cards for the mom-to-be (those clever card companies!) and was so touched, and a tad bit overwhelmed at what path lay ahead.

Being a mom certainly encompasses so many things. It's a job that requires may talents. You have to be a giver, coach, doctor, teacher, chef, nutritionist, bartender, cleaning lady, repair lady, interior decorator, financial planner, psychic, referee, seamstress, musician, artist, gardener, chauffeur, camp counselor, nurse, research assistant, secretary, personal shopper, personal assistant, philanthropist, journalist. You have to be organized, thorough, responsible, vocal, determined. You have to be an advocate. You have to be the voice of your child when they can't be their own voice. You have to give and love unconditionally.

While you will not get a pay check for any of this, and much of your work may go unnoticed, you have the most important role ever as a mom. Your reward comes each time your child smiles at you, snuggles with you, cries to you, puts their arms around your neck, hold your hand, waives good bye, leans on you for support, calls you to chat, asks your advise, sends you a card, comes to visit, and thinks of you when you never even realize it.

Oh Moms, where would we be without you?

This year I'm excited to celebrate my first Mother's Day as a Mom. Two weekends ago we visited friends in their beautiful new home, and their almost 5-year old daughter had so many adorable and hilarious quips. And, many wise ones. She was oogling over Emily and while she was admiring her, she looked at me and said "You must be so proud to have such a cute baby!" Why, yes! yes I am! There are so many things to be proud of this year, this first Mother's Day. I'm proud of Emily's playful personality, her love of life, her love on snuggling, her beautiful features, every inch of her adorable, chubby body. I'm proud of her determination, hard work, perseverance, and enthusiasm. I'm proud at how far she has come this year. I'm proud of how relaxed and happy she is with such a busy medical and therapeutic life. I'm proud of her focus when she wants to do something, her vocalization and exploration of sounds. I'm proud of her smiles, her occasional shyness. I'm proud of everything single thing about her. But mostly I am proud that I was chosen to be her mom, and she was chosen to be my daughter.

This year I say thanks to Emily, for giving me a Mother's Day to celebrate.

The Breast Laid Plans

I've just finished reading Unbuttoned: Women Open up about the Pleasures, Pains, and Politics of Breastfeeding a collection of short non-fiction stories that covers every aspect of breastfeeding (latching, struggling, not nursing, weaning, just to name a few).

Nursing can be a touchy subject. Touchy, because it is a personal decision. It's one thing to discuss it among friends, family and the doctor, but when the gas station attendant or that stranger in the grocery store start weighing in on your decision to breastfeed/not breastfeed, it's a whole other story.

Our (mine and Chris') decision to breastfeed Emily wasn't really a "decision". It was an assumption: of course I'd nurse her. Like many of our other parenting practices, it was influenced by the realities of Spina Bifida/having medical concerns. If we have the opportunity to do something, we do it, because we know what it's like to not be able to do some things. For example, I like to hold her, or swaddle/sling her, because I remember what it was like to not be able to hold her while in the NICU.

After Emily was born I was in recovery and the doctors were busy stabilizing Em so the meylomenincogyle could be closed. She was not allowed to eat before surgery, nor during recovery. My job was to start making food. Since I couldn't nurse her yet, I pumped. I pumped and pumped and filled those little bottles full of...air. Ugh. It took 3 days of pumping virtually round the clock for the colostrum to come in. Why was this happening?? But we reasoned everything was okay, because Emily was on IV's. Once she was cleared to start eating, we went down to nurse. I pushed my wheelchair down to the NICU and got ready to do as nature intended.

Only it didn't work.

Emily had a "weak suck". It makes sense now, knowing that she has overall low muscle tone. The tongue is, after all, just a muscle mass. So she has some weakness. I figured we'd just work through it and somehow overnight everything would be okay. We'd take off her blankets and diapers, unplug her, move her to the scale, weight her, plug everything back in, put the diaper on, wrap her up, and nurse...and repeat the whole process with the scale again only to find she wasn't even eating close to an ounce. We did this over and over again.

Then a few days later we were told she wasn't thriving because she wasn't getting enough to eat. This was unbelievably heartbreaking to hear. All I could do was breastfeed. I couldn't do anything else for her. I couldn't have the operations for her, take the meds, I couldn't manage her recovery, I couldn't take her home, I couldn't meet most of her needs at that time, so of course I wanted to do the one thing I was supposed to do: provide her nutrition. But to hear I was failing at ensuring my child could thrive, well that was just heart-wrenching.

We battled with the doctor who told us we needed to start supplementing Emily with formula. We had an army of hospital lactation specialists behind us pointing out that she was eating...it wasn't that she didn't want the breast milk, it was the ability to suck that was the challenge. With he help of our favorite NICU nurse, we found the secret weapon: the perfect bottle. Everyone agreed to give Emily 24 hours to put on some weight before visiting the formula discussion again.

So I pumped, transferred the milk to the special bottle, and Emily drank. This bottle was like a sippy cup...it required virtually no sucking. So while this didn't fix the latch/suck issue, it did ensure I was providing her nutrition, and that was all that mattered to me. She gained several ounces by rounds the next morning. No one ever said "formula" to us again.

After we left the hospital it was a good two months before breastfeeding wasn't a huge production. During those two months I often felt inadequate, and defeated. It hurt, physically and emotionally. Breastfeeding was waayyyy harder than what I had thought. This image that the baby just migrates to the boob and viola! starts eating was just not our reality. I felt isolated, like I was the only mother ever to face breastfeeding challenges.

Now, of course all these months later it's effortless, and I can nurse and multitask...Emily nurses and multitasks, and it doesn't take three pairs of hands, a boppy, soothing music, lanolin, and a whole set of prayers to get the job done. For us, it was a process. We had to really work at it, and I'm glad we did. And now I know that other people face the same challenges...after all, Hallmark wouldn't make a "Here to Support you while you Breastfeed" line of cards if it wasn't so darn hard.

This collection of stories in Unbuttoned resonated with me because it offers an array of breastfeeding realities. It highlights experiences with examples of decisions to nurse, decisions to bottle feed, use formula, stop nursing at a certain point, nurse for a while. It reminds me that everyone has a unique, individual experience with motherhood. It also reminds me that everyone has bumps along the road, and motherhood is a unique learning process for each mom.

Welcome to the First Post: Poo-Poo Holland

If you have a child who has special needs-medical, physical, behavioral, developmental, learning-then you've probably read "Welcome to Holland". Maybe a family member gave it to you, or another mom on your journey shared it. Maybe a well-meaning friend sent it to you as a Christmas card. Maybe you saw it online.

I first read it when I was about 6 months pregnant. We were 2 months into the Spina Bifida diagnosis. I read it and cried. I identified with it. I thought "Yes! This is where I am. Holland! Finally, a place I fit in." I turned to this poem throughout the pregnancy, and for several months of Emily's life.

I had a copy of this poem on my cork board at work. I had a copy on my fridge. When I felt isolated I turned to it and felt embraced by an invisible group of moms out there having the same feelings. We were all together, over in Holland.

But a few months ago this poem started irking me. Bothering me. And I didn't really know why. So I just threw out my copies, and forgot about it.

On Friday I was attending Session II of the Early Intervention Partner's Training Program. They opened by reading this poem. A chance for all 50 of us in the room to look at each other and say "Hi there, my neighbor in Holland!". It was obvious most everyone recognized this poem. By the end of it I was misty-eyed, but not for the reasons I used to be.

In reflecting back on this bothersome feeling that I had with hearing it again, I finally know why I don't enjoy this poem any more.

See, the stewardess is in charge of my destiny. She looks a lot like doctors we've seen, like the ones who told us Emily would never be independent, or self-sufficient. Like the ones who pushed their value system that kids with special needs don't belong in society. She looks like people in society who are scared of special needs kids because they may appear "different". She looks like people who *say* they accept everyone, but who can't make eye contact with someone in a wheelchair, or with delays, or with learning disabilities. She looks like the mommy group that wouldn't allow us to join. She looks like someone who pities us. And I can see beyond her facade of pleasantries and condescending kindness as she tries to tell me what my destination is.

In the poem, I am heading to Italy. But the stewardess TELLS me I no longer belong in Italy. That my place, my child's place, is somewhere else, in Holland. And in the poem, I resist going to Holland, I am sad...but I go because I am lead to believe I don't have any other choice. I must go to Holland, because I can't do any of the things I dreamed I'd do, that my child would do, in Italy. In the poem I secretly long for Italy, but I accept that in Italy I can never be.

Not because I don't want to be in Italy, but because Italy doesn't want me.

This is the fundamental problem I have with this poem. I used to have comfort in knowing there was a place like Holland where we "belonged", but now I see we should "belong" in Italy.

So, we are going back to Italy. I think we've actually been there for a few months already. And, I'm sorry if that makes some people in Italy upset. I'm sorry if they feel uncomfortable with us. But Chris and I belong here, Emily belongs here, every child, with or without special needs, belongs here, or anywhere else they desire to be. I'm tired of Italy excluding people.

To the stewardess who told to us we have to live in Holland: back off. It's 2010. No one should be segregated, singled out, or forbidden from going to the destination of their choosing. Maybe you like Holland, or maybe you wanted to go to France, or Spain. Go!! Don't let anyone tell you otherwise. What's important is you choose. We decide for ourselves where we belong.

For us, we are taking in the sights of Italy. We are going to the Coliseum. We always dreamed of taking Em there. It might take us longer to make the trip, and we might need a stander, walker, or wheelchair. Maybe the Coliseum needs to make upgrades so we can access it. We might walk slower in the Coliseum, using braces, or wearing orthopedics. We might even have to explain the history of the Coliseum a few times.

But we'll enjoy the site, and that's all that matters. That right now we are in a place we choose, a place we enjoy.

No matter where that is.

So watch out. Here we are.