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.
______________________________________________________________
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.
***
Visit 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.)
- Parenting A Child With Neutropenia — Jennifer at Hybrid Rasta Mama discusses the challenge of parenting a young child who cannot produce enough neutrophils to fight off bacterial infections.
- How I Love My High Need Baby — Shannon at GrowingSlower was shocked to find she is parenting a high-needs baby, but she's surviving thanks to attachment parenting.
- We're a Lot Like You — kaidera at Our Little Acorn talks about how her family is similar to others, even with all their special needs
- The Emotional Components of Bonding with Preemies — Having a premature baby can bring on many unexpected emotions for parents, but working through those emotions can bring about a wonderful bonding experience. Adrienne at Natural Parents Network shares.
- Raising a babe with IUGR: from birth through the toddler years — Rachel at Lautaret Bohemiet shares the story of how her son’s post-birth IUGR diagnosis affected his first days of life and gave her an unexpected tutorial in advocating for their rights as a family.
- When a grandparent has a disability — Shannon at Pineapples & Artichokes shares how she has approached explaining her mother's disability to her young child.
- Taking The Time To Really See Our Children — Sam at Love Parenting writes about her experiences working with children with various disabilities and how it has affected her parenting style.
- Natural Parenting In An Unnatural Environment — Julie at What I Would Tell You gives us a glimpse into how she improvised to be a natural parent against all odds.
- Getting Through the NICU — Laura at Authentic Parenting gives a few pointers on how to deal with your newborn's stay in the NICU.
- Living With Sensory Processing Disorder — Christy at Adventures in Mommyhood talks about the challenges that can come from living with a child who has SPD.
- Our rules for NICU - March Carnival — Hannabert's Mom shares her family's rules for family and friends of a NICU baby.
- Letter from Mineral's Service Dog — Erika at Cinco de Mommy imagines the letter that accompanies her special needs son's Service Dog.
- Blessings in Unexpected Places — That Mama Gretchen welcomes an inspiring guest post from a dear friend who shares about the blessings that come from a child with Down syndrome.
- Tube Feeding with a Blenderized Diet of Whole Foods — Erica at ChildOrganics shares her experiences with using real food when feeding her daughter who was unable to feed herself and needed a feeding tube.
- Abbey and Evan — Amyables at Toddler In Tow writes about watching her preschooler play with her friend who is autistic and deaf, and wonders how she can explain his special needs better.
- How to Minimise the Chance of a {Genetically Prone} Child Being Diagnosed with ADHD — Christine at African Babies Don’t Cry shares her tips on keeping a child who is genetically prone to ADHD from suffering the effects.
- Tough Decisions: Parenting With Special Needs — Brenna at Almost All The Truth shares what has been keeping her up at night worrying, while spending her days discovering just what her options are for her precocious child.
- Life with my son — For Dr. Sarah at Good Enough Mum, life with an autistic child is just another variation on the parenting experience.
- Dear Special Needs Mama — Sylvia at MaMammalia writes a letter of encouragement to herself and other mamas of special needs children.
- His Voice — Laura at WaldenMommy relives the day her son said his first sentence.
- What is 'wrong' with you' The challenge of raising a spirited child — Tara at MUMmedia discusses the challenges of raising a child who is 'more' intense, stubborn, and strong willed than your average child.
- Tips for Parenting a Child With Special Medical Needs — Jorje of Momma Jorje shares her shortlist of tips she's learned in parenting a newborn with special medical needs in a guest post at Becoming Crunchy.
- Parenting the Perfectionist Child — Mandy at Living Peacefully with Children discusses that as parents of gifted children, we are in the unique position to help them develop the positive aspects of their perfectionism.
- Montessori-Inspired Special Needs Support — Deb Chitwood at Living Montessori Now gives a list of websites and blogs with Montessori-inspired special-needs information and activities.
- Accommodating Others' Food Allergies — Ever wonder how to handle another family's food allergies or whether you should just skip the play date altogether? At Code Name: Mama, Dionna's friend Kellie (whose family has a host of allergies) shares how grateful she is when friends welcome them, as well as a list of easy snacks you can consider.
- Only make promises you can keep — Growing up the child of a parent with a chronic illness left a lasting impact on Laura of A Pug in the Kitchen and what she is willing to promise for the future.
- A Mom and Her Son — Jen at Our Muddy Boots was fortunate to work with a wonderful family for several summers, seeing the mother of this autistic son be his advocate, but not in the ways she thought.
- Guest Post from Maya at Musings of A Marfan Mom — Zoie at TouchstoneZ is honored to share a guest post from Maya, who writes about effective tools she has found as a parent of two very special boys.
- You Don't Have to Be a Rock — Rachael at The Variegated Life finds steadiness in allowing herself to cry.
- When Special Needs Looks "Normal" — Amy at Anktangle writes about her experience with mothering a son who has Sensory Processing Disorder. She offers some tips (for strangers, friends, and loved ones) on how to best support a family dealing with this particular neurological challenge.
- Special Needs: Limitation or Liberation? — Melissa of White Noise describes the beauty in children with special needs.
- How I Learned It'll Be Okay — Ashley at Domestic Chaos reflects on what she learned while nannying for a boy with verbal delays.
- Attachment Parenting and Depression — Shannon at The Artful Mama discusses how attachment parenting has helped her get a clearer image of herself as a parent and of her depression.
- On invisible special needs & compassion — Lauren at Hobo Mama points out that even if we can't see a special need, it doesn't mean it's not there.
- Thoughts on Parenting Twins — Kristin at Intrepid Murmurings shares her approach to parenting twins.
- ABCs of Breastfeeding in the NICU — Jona at Breastfeeding Twins offers tips for establishing breastfeeding in the alphabet soup of the NICU.
- Life With Michael - A Mother's Experience of Life With Aspergers Disorder — At Diary of a First Child, Luschka's sister-in-law Nicky shares her experience as mother to a child on the Autism Spectrum. It is filled with a mother's love and devotion to her child as an individual, not a label.
- Raised by a Special Needs Mom — Momma Jorje shares what it was like growing up as the daughter of a mother with a handicap.
- Becoming a Special Needs Mom — Ellen at These Broken Vases shares about becoming the mother of a child with Down syndrome
- She Said It Was "Vital" — Alicia of Lactation Narration (and My Baby Sweets) discusses the conflict she felt when trying to decide whether therapy was necessary for her daughter.
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!
ReplyDeleteOh 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.
DeleteWhat 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
ReplyDeleteI really enjoyed this post!
Julie
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!
DeleteIt'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!
ReplyDelete"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.
DeleteThank 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.
ReplyDeleteYou know, there is an underlying sense in the Down syndrome community that contrary to our assumptions, our life is better than good :)
DeleteBut how I understand your fears, I actually lived them out until I got over it :)
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!
ReplyDeleteThanks Laura. I often do tell parents, that yes indeed, they will be strong enough because love conquers all things.
DeleteI'm so glad I found your blog - your writing is very moving. Thank you for sharing!
ReplyDeleteI am thankful I found you! This carnival has been incredible! What great posts I have been reading thanks to all your hard work!
DeleteI 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!
ReplyDeletehttp://www.thatmamagretchen.com/2012/03/blessings-in-unexpected-places.html
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?
DeleteI 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!
ReplyDeleteI wrote my story for this carnival too!
http://www.thatmamagretchen.com/2012/03/blessings-in-unexpected-places.html
More and more I think there needs to be a "medela pumping" stories carnival! Ha! I am off to read your post!
DeleteThank you for sharing how her diagnosis isn't a sentence and doesn't define your family.
ReplyDeleteI 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.
DeleteCan 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.
ReplyDeleteI 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.
Maybe there is potential for a book "Stories From the Medela Pump." Ha!
DeleteI 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.
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.
ReplyDelete