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Wednesday, July 31, 2013

Guest Blogging At What To Expect Dot Com

Can you believe it!?

Check out my first post in the Word of Mom content area.  Click here to read my post.

There is so much great content on this site and including writing about diverse experiences like mine - which I think is very cool.

Here is the content of that post:

What I Learned by Being Mom to My Beautiful Warrior Princess Daughter

Me and a 5 year old Ellie on a beach in California.
My challenge when I was asked to write for was to decide what to write.What do I have to offer when my parenting journey has been so different?If I write about my actual experiences will it resonate with this community?
In attempting to write for a new community of people, far more diverse than the family, friends, special needs parents, and differently abled people who read my blog, I had many starts and stops. Finally, frustrated I gave up. A day later, while blow-drying my hair, when I do my best thinking, I realized that the "expected/traditional path" is not so commonplace anymore — nor has it ever been. I define "traditional path" as a. getting pregnant, b. having a baby, c. taking baby home, and d. living happily ever after. (Yes, I did read all the fairy tale books my local library had to offer before I was 10.)
So here goes.
I have gained some perspective from getting to be the mother of my beautiful 10-year-old warrior princess, who happens to use a wheel chair, contend with quadriplegic cerebral palsy (CP), feeding and speech issues, reflux, but who also loves life, Fijits, dancing, and school.
When Ellie was born three months early, things went differently than I expected. I spent the first few years of her life worrying and fearing how she might turn out. Not that any parent has ever worried like this before... I did wonder if her CP would get worse, would she ever walk or talk or laugh? I worried, am I parenting her well, am I doing things right, can I handle this? Again, questions no other parent ever asks...
Time is a wonderful thing in that it heals all wounds and addresses all fears through the crucible of experience and the lens of perspective. Now that she is 10, I have a lot of answers to my questions as well as a decade of experience under my belt in dealing with complex situations and making really tough choices. Here are some things I learned:
It's relative. Anything deviating from the expected path of have baby/take baby home is hard. During Ellie's long stay in the Neonatal Intensive Care Unit (NICU), full-term babies would come in for a day or two because they had jaundice. Their parents were just as upset as we were to find themselves peering at their baby, rocking Lady Gaga worthy shades, tanning under the bili lights. The key is to honor your experience and that of other parents. Here's a silver lining for parents of jaundice babies: Our doctors in the NICU said their research shows that such babes have higher IQs.
Parenting muscles strengthen over time slowly as you build up to what you can deal with or find someone to help. I don't subscribe to the credo that life never gives you more than you can handle. In my experience, life has often given me way more than I could handle. I think a more accurate sentiment is that life will always give you more than you can handle because as a species we live in communities versus being nomads. We are meant to work together and receive and give help. Over the last 10 years our family has had loads of help from doctors, nurses, teachers, and other parents who could handle the situations we were facing and either taught us what to do or got someone else to do things beyond our reach. I think when the unexpected happens it's important to remember that you are not alone because it's easy and reasonable to get very overwhelmed. Having a baby is overwhelming.
When I was pregnant with Ellie, she and I had this ongoing conversation. Dave composed songs for her and sang to my belly. We were so overjoyed we didn't worry about the future. Then when she was born three months early we suddenly had a lot to worry about and no prior experience to rely on — like most first-time parents with some added complexities. Today we have parenting muscles that are still being toned by Ellie. But we have help in each other and in our community. It's all worked out into a life filled with love, laughter, and meaning.
You are the expert on your child because you are paying the closest attention — don't forget that. We were very luck to have a great neonatologist who told us right from the start to "watch the baby" versus the monitors. This became a habit and as all parents know — you are observing your baby and small child 24/7. We have had to make a million between a rock and a hard place style decisions and heard very scary prognoses. If I had believed what the doctors told us (basically that Ellie would be a vegetable), I would not have done a lot of the things I did that have been vital to Ellie's development.
No neurologist has the final word, as the brain is still the ultimate black box of medicine. If anything, the doctors as a rule predict the worse — which was their way of trying to prepare parents. In my case it made me fight all the harder for Ellie.
Bottom line is you can't always believe what the doctors say about outcomes because sometimes they are guessing about a future they cannot always predict. More importantly, all children with challenges benefit greatly when they have someone who will make an investment in them. Look at Temple Grandin or Helen Keller or Ellie. The key is not to give up or be devastated by a prognosis so that you lose your connection with your child and your hope and creativity.
Ask each important question three timesto three different experts in order to come to your own best conclusion. We learned from Wry, a fellow NICU parent. When you have to make tough decisions about the health of your child, it's always an exercise in weighing two evils. Which one will help the most with the least side effects? We learned that if you ask the same question of three different experts, you often get three different variations of one answer or three different answers. This really helped us think for ourselves but also weigh our options with different perspectives. This can also be time consuming but for medical interventions that will be life changing for your child, if you have the time, this is not a bad use of it.
Let your love lead you. Your love for and bond with your child is a mystical thing of mythic proportions. My heart opened up all the way when Ellie came into my world. It's the best love I have ever felt (and I love my husband dearly). This love for her has carried me through it all — and continues to. This love makes any challenge I have to go through worth it. Love has many, many expressions. Some expressions of love are subtler than others but if you are paying attention you will find a huge bounty no matter what differences you are facing.