Wednesday, October 3, 2012

{31 for 21} Meet Melissa.

Today, please welcome our first guest: Melissa from Garden of My Heart.

I started reading Melissa's blog when I was pregnant, and I loved seeing her daughter.  I've mentioned often that I was drawn to photos of little girls a bit older than Ellie, because they made me feel like Ellie would be okay.  Rowenna is two, and she's adorable.

I sent Melissa the following list of questions.  Enjoy getting to know her, her faith, and Miss Rowenna.  Then pop on over to Melissa's blog and say hi.  I bet you'll learn something; I usually do.

The Questions...

1. What is your faith background (pre-child with Down syndrome)?

2. How was your faith impacted by your child's diagnosis?  How did your faith impact how you viewed the diagnosis?
3. Has your faith shaped the way you see your child with Down syndrome?  How is it impacting the way you raise your child?
4. If you're part of a faith community, how have they embraced your child?  

Photo of Rowenna from Garden of My Heart.

Here are Melissa's responses.

1. I am Baha'i, as is my husband. We are choosing to raise our daughter in the Baha'i faith. My husband and I were both raised Catholic, and chose the Baha'i faith later in life.

2. The Baha'i faith places an emphasis on tests, and says that tests make us stronger in faith and stronger as people. So when Rowenna was born our first thought was along those lines - this is a test, gold is hardened by the fire, we will be stronger, etc. This was the first time in a long time I had to sit down and really think about my beliefs. I have a very hard time believing God is up there making a decision for my child to go through some difficult things (like heart surgery and all the related medical care before and after) just to teach someone (likely myself or my husband) a lesson to make us stronger.

The conclusion I've come to is that Rowenna's diagnosis (and related diagnoses) are just that - just diagnoses. They happened because they happened. There was no divine intervention, God did not hand-select this egg and this sperm to join up and make Rowenna. (I could go on and on about how I don't believe God is in the room every time a baby is conceived, but I'll spare you. :P)

Where faith ties in is in the journey toward acceptance, and in the joy of Rowenna's creation. My faith's beautiful words got me through dark days when I didn't understand what it meant to be Rowenna's mother.

I know this seems like a razor thin line, but to me it's important. God didn't give a special baby to special people, but His words, through our religion, have helped us to love our child even more deeply, and has given us hope for the future. 

3. The Baha'i faith has something pretty spectacular to say about ability:

"Know thou that the soul of man is exalted above, and is independent of all infirmities of body or mind. That a sick person showeth signs of weakness is due to the hindrances that interpose themselves between his soul and his body, for the soul itself remaineth unaffected by any bodily ailments. Consider the light of the lamp. Though an external object may interfere with its radiance, the light itself continueth to shine with undiminished power. In like manner, every malady afflicting the body of man is an impediment that preventeth the soul from manifesting its inherent might and power. When it leaveth the body, however, it will evince such ascendancy, and reveal such influence as no force on earth can equal. Every pure, every refined and sanctified soul will be endowed with tremendous power, and shall rejoice with exceeding gladness."

In other words, Rowenna is just Rowenna - regardless of ability. Her soul is there, and that's the part that matters. Our soul is the great equalizer - we all shine, and our bodies don't change that. I just wish the world saw it that way. I see Rowenna's soul, not her diagnosis, and I would love for her to live in a world where everyone sees that.

I think this is a conclusion the vast majority of parents raising a child with a disability come to on their own, but I do love that myfaith backs it up, and teaches it to others.

On a day-to-day level, we use the tenets of our faith to guide Rowenna. (as much as you can guide a 2 year old - lol) Our faith teaches equality of men and women, the necessary relationship between science and religion, and the acceptance of all of God's religions. My husband and I share household and childcare tasks equally - and intentionally - in accordance with this belief. We offer Rowenna a world of wonder, and when she's a little older, we will add in the discussions of how and why things in our world work the way they do. (It helps to be married to a physics teacher!) She has already been exposed to several different types of worship services and we plan to continue to allow her to explore faith in a way that suits her. If she expresses an interest in a faith outside our own, we plan to nurture that. 

The faith also places emphasis on being a good steward to our fellow human beings and to our earth. We have already participated in service projects, and plan to continue that, and we have strong ties to the earth through our large garden, visits to the family farm, and frequent outdoor/camping trips. Rowenna is already helping with animal care tasks (like brushing the cat) and with any luck we'll have some backyard chickens this spring and she will grow up learning how to care for them. 

4. Baha'is don't worship in a traditional Judeo-Christian sense. We are loosely affiliated with a "local" community (it's about 20 miles away) and they have been fine with Rowenna attending gatherings and treat her like the other kids.

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  1. I would love to participate in 31 for 21. I don't know how to. Advice? My daughter is 19 months going on 20.

    1. Tricia, if you or anyone else missed this link in my first 31 for 21 post, here's the link to all the blogs participating. No requirements, just blog 31 times (or as close as you can) in October to raise DS awareness!


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