Bedtime

Last night, as bedtime again took more than an hour, I found myself getting irritable about the time it takes, and how many other things I could be getting done.

 But laying there in the dark, waiting for Acorn to sleep, I had a realization: this is time with him I can never get back.

One day he'll be old enough that he won't want someone to stay with him while he goes to sleep.
One day he won't need to have someone snuggling with him to feel safe enough to drift off.
One day he'll take showers without supervision, and put his pajamas on without help.
One day he'll move out and sleep somewhere else.

He already seems so big - especially in comparison to Leaf. I remember when he fit in some of these clothes; he was still in the hospital when he wore some of these. And sometimes it feels like he's just growing up too fast, even as we struggle with things he can't do yet.

So, again, a reminder to be mindful - to be present - because this moment right here is the only now I've got.

We're a Lot Like You

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.

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It's kind of funny, but the topic left me struggling for a bit - after all, special needs parenting is a pretty big theme here. But it's a pretty broad subject, all things considered, and I wondered what would really be of interest to the carnival readers - after all, while we strive for following natural and attachment parenting ideals, we make a lot of trade-offs, and I often feel like the things that my children need make us outcasts amongst our more naturally minded friends.

And so I thought that maybe that's the thing I ought to write about. One of the primary tenants of Natrual Parenting is that while you keep the ideals in mind, you also strive for balance and for doing what works best for your family. No two families are alike, so Natural Parenting often looks a little different from family to family, and ours is no different.

We feed with love and respect...even if it is a tube feeding, even when the only thing a child has eaten in days is cheerios and prescription formula.

I pumped breastmilk...for as long as it seemed a viable option for both Acorn and Leaf, as long as it wasn't getting in the way of actually doing the things they needed.

We have very attached kids...who happen to be attached not just to us, but to several of their nurses as well.

We reasearch our medical options and choose carefully...we give elderberry syrup for viral illnesses along with albuterol; we see a chiropractor and numerous regular doctors too.

We babywear....just not all the time, because it's hard to babywear while carrying 75 pounds of ventilator and oxygen.

We use cloth diapers...much to the horror of some of our medical staff. We've used washable cloth options for other disposable things too, like in place of gauze under g-tubes and trachs.

We recycle....including the plastic syringes and feeding pump bags and the cardboard that everything seems to arrive packed in.

When the weather's nice, we get outside...even if that means hauling the ventilator and oxygen to the park.

We discipline gently...even when the other parents we know whose children have similar medical issues think we must be crazy to not spank, yell, or do time out.

Every day here is one of learning...even if some days the extent of the learning is 4 hours of therapist appointments, and even if our idea of milestones isn't quite the same as everyone else's.

And we may be among the very few families who've had doctors advise not to let our children cry it out, which we just smiled about and said, "oh, that's probably a good idea."

Really, we're a lot like most other families. We just come with a lot more equipment and doctors than even a mainstream family. But it doesn't make us bad Natural parents....just a little extra special.

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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.

One of His Favorite Places

Acorn loves escalators - it took quite a bit of practice to get him accustomed to doing them himself rather than us carrying him, but once he got over his initial fear of the moving steps, he was in love. He could spend an hour going around in circles - up one, and back down the one next to it.

One of his other favorite things is water. Besides all the normal water things, he loves fountains. He's learned to throw pennies in, and I think most of the time, he'd really rather just climb straight into the water rather than sit on the sides.

The other day when he was at home and not feeling well, the afternoon was going better than the morning had, so we went to a nearby high-end shopping mall. This place is so big, there are 3 floors on one side of the street, and 2 on the other, with an enclosed walkway over the 8 lane road...and the walkway includes moving sidewalks. They've got several fountains and reflecting pools in the mall, but the neatest one is a computer controlled fountain that spits water straight up out of jets in various patterns.

So...we went in the 3rd floor. We went down 2 escalators. We spent a good while watching the various fountains. We went back up a floor, and across the walkway, then down in a glass elevator to see the fancy fountain, where Acorn sat for nearly half an hour, just watching. We then rode the escalators there a few times, went back up in the elevator, back across the walkway, and then up one more escalator to go back to our car.

Acorn had the time of his life.

For a kid who was only feeling so-so, it was a lot of walking, but the rest breaks to watch the water were well worth it.

Just another opportunity to remember to be fully present and mindful all the time...