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 Hobo Mama and 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.
For this month’s carnival I am thrilled to introduce you to my amazing college roommate, Callie! She is an inspiration is so many avenues of life, but most recently as she has entered the parenting stage with her two children, Mia and Liam. Read on and you’ll see exactly what I mean!
We welcomed our first child, Mia Grace, into our family in September of 2009. We went into labor full of nothing but excitement and anticipation, without a clue that we would be welcoming anything other than a healthy baby. We did everything possible to make sure that our baby would have a safe and healthy arrival to this world. We attended birth classes, followed a strict high protein diet and took all the right vitamins.
Upon Mia’s arrival, she was quickly taken away because there was excess fluid in her lungs and she needed breathing support. While our daughter was out getting the medical attention she needed, our midwife came to our room and told us that she was pretty sure that our daughter had Down syndrome. While my husband has always desired to adopt a child with special needs, it was still a far off idea that we expected to happen on our terms much later in life. At that moment, there were so many emotions, questions and fears that rushed through our minds. We had no idea what our future as a family was going to look like. We questioned why this was all happening and wondered what the diagnosis of Down syndrome even meant in its entirety.
Before we were able to fully process that diagnosis, another diagnosis came to the immediate forefront. A common attribute of children with Down syndrome is congenital heart defects. At one week old, we found out that Mia had a large hole between the two ventricles in her heart and that she needed surgery as soon as she was strong enough. At one month old, she wasn’t getting any stronger, began losing a lot of weight, was struggling to eat and got a bad cold. We found out that the hole began causing her a lot more trouble and she began to show signs of heart failure. She needed surgery as soon as possible, but she needed to gain weight first (which was nearly impossible with how inefficiently her heart was working). The next 4 weeks were the longest of our life. Mia was working extremely hard to breathe and eat, so all she could do was sleep. Our nights were sleepless, but not because of a crying infant, but because crying was too much work for her, so we had to watch her carefully and constantly. Finally, Mia was able to undergo open-heart surgery at just 8 weeks old to repair the hole in her heart. Handing her over for surgery with tear stained cheeks was the hardest thing we have ever had to do. But we knew she needed the surgery to live, thrive and grow.
Through that journey, Mia showed us how much of a fighter she could be. She overcame all odds, blew everyone away and recovered from surgery like an absolute champion, allowing us to leave the hospital only after five days. This moment is at the top of my list as the proudest & best moment of my life, so we made a video to help us remember the immense gravity of that journey and how to be grateful for each day as a gift of grace. You can watch it here (disclaimer: not for the faint of heart):
The joys and blessings are so rich after jumping countless hurdles, trials and medical struggles. Triumphs and milestones around here remind us that we have so much to celebrate and be thankful for. The perspective that is gained on this journey is constant and life changing and I am so grateful for that. We (those with special needs children AND those without) ought to see each day, each moment, each triumph and each trial as an opportunity to learn something and experience God’s immense grace in our life. It is there. Sometimes it is really hard to see. It takes practice and perspective to see it, give thanks for it, trust and be changed by it (trust me, this is something I have far from perfected and am continually learning)!
So much joy and beauty emerged from those times of great trial and brokenness (don’t they always?). One of the greatest gifts that we have received through Mia’s life has been the gift of faith. That gift is priceless. God used a helpless baby, struggling to breathe and eat to show us His power, love and grace. In my heart, it so closely parallels how Jesus came to Earth as a vulnerable baby and turned the world upside down, bringing His grace and love into the most unexpected people and situations. God is all about transfiguring the messy into beautiful and using the weak to teach the strong. He is without a doubt doing that through Mia and He is changing many hearts to value and love what He values and loves. He is continually showing up and teaching us more about himself and His kingdom through Mia. What a gift.
Despite everything that happened in those first 3 months of Mia’s life, from the first moment we learned of her having Down syndrome, we felt honored and blessed that God would entrust such a treasure and a gift into our hands. We didn’t know a lot, but we knew that He was doing something incredible in our life and through our baby. And we haven’t been the same since. God has used Mia in more ways than we can count to share His deep love, grace, mercy, hope, joy and beauty with us. He gives incredible blessings through these precious children, if we are able and willing to open our eyes and hearts to receive them. Even if those blessings are different from the ones we always thought we would receive, they are no less. In spite of all that she has been through, this child (who doesn’t even speak) has taught us more than a few things by just being her:
To love unconditionally and freely, without judgment.
To offer a sincere and full grin at every opportunity.
To persevere with joy in spite of setbacks.
To rejoice in all things.
Her joy of life is humbling.
Her spunk & humor are hilarious.
Her laughter is frequent & contagious.
Her personality is adorable & sweet.
Her kindness & love runs true and deep.
Her wonder & appreciation for life is beautiful.
Her fight & strength in the face of all odds is incredible.
She takes what some call a disability and shows so much ability.
She has taught us more in her short life than a lifetime of study could ever yield and we are forever changed for the better because of her. Ultimately our desire for our children (special needs or not), is that they would experience the love of Christ, love others and lead purposeful, meaningful lives. In many ways, Mia has already done these things in her very short, but incredibly powerful 2.5 years of life. What more could we ask for? We are surely blessed.
Thank you for the opportunity to share! If you are interested in the full version of our story & journey, you can take some time to read it here on my blog: Those Crazy Kackleys.
If you or someone you know is facing a diagnosis or is already on this journey with a child with special needs, know that there is so much hope and love to look forward to! I’d be happy to touch base and get you connected to some incredible resources that have guided and blessed us tremendously!
Thank you so much for welcoming Callie! Don’t you agree that she and Mia are inspiring? I can’t wait to see all Mia grows to become. With her sweet spirit, family support, and perseverance she is bound to move many mountains … she already has!
… Oh so many ways to follow along …
Blog – GFC – Blog Lovin’ – Facebook – Twitter – Pinterest – Vote
Blog – GFC – Blog Lovin’ – Facebook – Twitter – Pinterest – Vote
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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.
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Your video is amazing – you are such a strong mama!! I'm sitting here in tears – I'm so glad that you have a healthy, whole girl :) What a beautiful and moving story of love – thank you so much for sharing it with us!
Thank you for sharing your story and strength. Special needs children are really the best teachers, they teach us way more than we teach them!
Oh I love this post! Thank you Gretchen for making sure I stopped by, what an incredible beautiful story. As a fellow mom to a little girl with Down syndrome I find myself smiling at these great mysteries that our children show us despite their diagnosis. That extra chromosome has often partnered with God to teach me so much about life, and love, and what really matters.
I am so proud to be Mia's auntie and your sister. So well spoken sis. I love you
There is such disbelief and shock in those early days and a fierce love for this little baby that so greatly and fully depends on us. The beautiful part is how they as much as we grow to adjust and experience the most bountiful love! You (Callie) might like my essay "What I Would Tell You." Check it out at http://www.whatiwouldtellyou.com if you wish.
"That extra chromosome has often partnered with God to teach me so much about life, and love, and what really matters." This is such a beautiful statement :) I'm tweeting it!
Oh, my goodness, I'm here in tears. What a beautiful and inspiring story! It would be so hard to have such momentous changes handed to you right after the birth. My son had to have a minor surgery at 1 year, and I was a wreck; I can't even imagine what you were feeling (or I kind of can, but magnified by a thousand!!). I love seeing in the video and pictures the bond you two have. Your daughter is absolutely beautiful — thank you for sharing your story for the carnival, and thanks to Gretchen for hosting it!
Like Lauren, I am in tears. What a beautiful story – and what a beautiful little girl! What a fierce heart and sweet face she has! Thank you Callie for sharing your family's story! I know that Mia will continue to show you the beauty of His grace as she grows!
What an incredible story! Thank you for sharing it, and Mia is soooooo sweet! She's the prettiest little thing! I love how you emphasize her abilities. Incredible.
Thank you, it was a privilege to share! I'm so blessed to hear that Mia's life and story can bless others as she has ours!
Thank you for taking the time to read it! She blesses our socks of that's for sure! So glad you enjoyed it :)
Thank you so much! I agree, her beauty is pretty astounding :)
What a lovely story, and a beautiful little girl. I've got tears in my eyes :)
What a gorgeous little girl you have, and what a beautiful blog post about her. I had to blink back tears as I watched the video and saw your bravery through such a difficult time – but how wonderful for all of you to have come through that and to have your beautiful girl. Thank you, Callie, for writing the post, and Gretchen for hosting it!
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