Tuesday, March 13, 2012

Becoming a Special Needs Mom

Welcome to the March 2012 Carnival of Natural Parenting: Parenting With Special Needs


This post was written for inclusion in the monthly Carnival of Natural Parenting hosted by http://www.hobomama.com/2012/03/march-carnival-of-natural-parenting.html" target="_blank">Hobo Mama and http://codenamemama.com/2012/03/13/march-2012-carnatpar/" target="_blank">Code Name: Mama. This month our participants have shared how we parent despite and because of challenges thrown our way. Please read to the end to find a list of links to the other carnival participants.










I never thought I would be one of them, the mother of a child with special needs. I thought that only special people were able to parent children with disabilities, and I was lacking a good measure of special. When my second daughter was born with Down syndrome, I assumed my life would be marked with the limitations brought on by a child that was less than perfect. I was so scared.

Because Nichole had low muscle tone as a result of Down syndrome, she was not able to nurse well. Eight times a day I pumped, and as freely as my milk would come, so would my tears as I grieved my baby’s diagnosis. The stereotypes of people with Down syndrome danced before me to the tune of the swishing sound from my Medela breast pump. I wondered, through my tears, if I would ever be able to truly love my own child.

But love her is exactly what I did.

The fear, the questions, and the sadness disappeared as I held my round faced, soft skinned, button nosed baby girl. I was captivated by her eyes. It was as if she had power over me, power to bring me in and inspire a love inside of me I had never experienced before. I felt joy and peace in new ways as I allowed my baby girl with Down syndrome to touch my life. She challenged some of the things I had held as meaningful in life. My priorities were rearranged. Maybe I was the one less than perfect after all. 

It is interesting that the path I would not have willingly chosen, is now a path that I would chose all over again. This life we do with Nichole is more abundant than I ever imagined. 

While there are difficult times, those are not the defining moments in our life. The defining moments are those in which we celebrate the accomplishment of reaching milestones. When hard work pays of and Nichole is able to accomplish new things. I see it as my oldest daughter has more compassion and acceptance toward other people because of her little sister. Or the times in which I stare at my child and I feel a love so intense that it brings me to tears.

Nichole is so much more than her diagnosis. She is more than any limitations she might have because of her Down syndrome. She is a little girl with unique talents, abilities, and strengths. Her life has meaning, it is valuable, and it is hers.

But most of all, our life is more normal than it is different. 
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Ellen Stumbo is a freelance writer and mom to 3 girls. The beautiful life of her daughter with Down syndrome led to the adoption of a little girl with Cerebral Palsy. Ellen blogs at These Broken Vases. Check out her "About Me" tab where she has a list to all her published articles.









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Carnival of Natural Parenting -- Hobo Mama and Code 
Name: MamaVisit Hobo Mama and Code Name: Mama to find out how you can participate in the next Carnival of Natural Parenting!


Please take time to read the submissions by the other carnival participants:


(This list will be live and updated by afternoon March 13 with all the carnival links.)







21 comments:

  1. This was so touching. Thank you for sharing your story! I've often wondered how I'd cope with being the mother of a baby with special needs, and I appreciate how honest you are about your journey. It's true that parenting special needs children isn't something that's demanded of some sort of super parents, but just parents like all the rest of us. Thanks for the inspiration, and thanks for participating in this carnival!

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    1. Oh Lauren, thank you! This is what I want people to know the most, we are just your average parent, we have no more love, patience, or gumption than our neighbor. So I appreciate your words and for seeing me as an "equal" in this parenting adventure.

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  2. What an honest and loving tribute. I can relate to the tears flowing with the milk and that unforgettable "swishing" sounds of the Medela pump. I am a part of this carnival, too. You can find me at www.whatiwouldtellyou.com
    I really enjoyed this post!

    Julie

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    1. Oh Julie, that Medela pump! Yes, I think there should be a book written about all that takes place when mother's are pumping! I will definitely stop by and check your blog!

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  3. It's the little joyous moments, when your child light up your heart, that are the real defining moments. Last night, my daughter took such joy in feeding a pretzel to me - her laugh lit up the whole room!

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    1. "The little joyous moments" I like that. You are right. Erma Bombeck wrote in one of her poems that we witness miracles and know it, we do not take them for granted. I think of those little joyous moments as being so present in the moment that nothing is ever taken for granted.

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  4. Thank you for sharing. When I was pregnant we had a discussion with a friend about what we would do if our ultrasound showed any signs of Down syndrome. I was 22 and panicked at the idea -- we weren't prepared for a baby, let alone one with special needs, and what about quality of life? He replied with something along the lines of, "I have a cousin with Downs, and he's one of the happiest people I know. It's not a bad quality of life just because we can't imagine picking it." It always stuck with me.

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    1. You know, there is an underlying sense in the Down syndrome community that contrary to our assumptions, our life is better than good :)
      But how I understand your fears, I actually lived them out until I got over it :)

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  5. I always wondered if I'd be able to be strong enough if we were to find ourselves in this position. It's so beautiful to realize that your story went from struggles to joy and continues to spread! Such a beautiful post!

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    1. Thanks Laura. I often do tell parents, that yes indeed, they will be strong enough because love conquers all things.

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  6. I'm so glad I found your blog - your writing is very moving. Thank you for sharing!

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    1. I am thankful I found you! This carnival has been incredible! What great posts I have been reading thanks to all your hard work!

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  7. I felt like I was reading my own story as I read yours. I also submitted mine for this carnival and our titles are almost identical! I am sooo blessed to know that there are others out there on this amazing journey! It is a beautiful to hear how God has transformed through our beautiful girls with Down syndrome! Blessings!
    http://www.thatmamagretchen.com/2012/03/blessings-in-unexpected-places.html

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    1. Yes! I find it fascinating that so many of us that have kids with Down syndrome come to the same discoveries using words such as gifts and unexpected beauty. There is something about the extra chromosome isn't there?

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  8. I am was so blessed reading your story as it parallels ours in so many ways! Thank you for sharing your heart, I remember those pumping cry fests all too well! It is amazing to see how God has used our beautiful daughters to transform and teach us so much about love and Himself. Bless you!
    I wrote my story for this carnival too!
    http://www.thatmamagretchen.com/2012/03/blessings-in-unexpected-places.html

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    1. More and more I think there needs to be a "medela pumping" stories carnival! Ha! I am off to read your post!

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  9. Thank you for sharing how her diagnosis isn't a sentence and doesn't define your family.

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    1. I know to many looking in it defines our family, and it appears as if it was a life sentence, but it really is not...which is why I love to share with people about what life is really like. Thanks for leaving a comment.

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  10. Can I get on the Medela pumping story bandwagon? I suspect, though I am DONE pumping forever, that I will always remember that sound - 4 different pumps across 2 kids, but the sound sticks in my head.

    I don't know that it's only special people who can parent a child with special needs, but having met people who would not step up and do the things we special needs parents must do, I suspect that it turns us into something special, if we let it.

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    1. Maybe there is potential for a book "Stories From the Medela Pump." Ha!
      I have often said that I have met the most incredible people thanks to my daughters. So I have said, if there is anything special in us, it is because of our children, they have made us into who we are.
      Thanks for leaving a comment.

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  11. What a wonderful post! I think it serves as a great intro to the world that is parenting a child with Down syndrome! You might enjoy my post: I did not Birth a Syndrome. I've written a few posts about our experience with Spencer and his diagnosis. He is just nearing 3 months old now.

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