Tuesday, April 30, 2013

Book Review: Bloom: Finding Beauty in the Unexpected


I was excited when TLC Tours asked if I'd like to participate in Kelle Hampton's Blog Tour. I've read her blog, Enjoying the Small Things, you see. And so I accepted and received (free of charge, for review purposes) a copy of Bloom: Finding Beauty in the Unexpected.

"From the outside looking in, Kelle Hampton had the perfect life: a beautiful two-year-old daughter, a loving husband, and a thriving photography career. When she learned she was pregnant with their second child, they were ecstatic. But when their new daughter was placed in her arms in the delivery room, Kelle knew instantly that something was wrong. Nella looked different than her sister, Lainey, had at birth. As her friends and family celebrated, a terrified Kelle was certain that Nella had Down syndrome—a fear her pediatrician soon confirmed. Yet gradually Kelle embraced the realization that she had been chosen to experience an extraordinary and special gift."

I have said, many times, that I was very lucky to have received Spencer's diagnosis of Down syndrome during pregnancy. I was given the opportunity to grieve, accept and prepare - all before actually meeting our son. I've shared birth stories with my friends of children with DS, but I don't think I ever realized just how awful it could be, the shock of it.

Before I even got through the prologue, I was crying with Kelle. I'd already read Nella's birth story on her blog before, but she shared that grief with her readers in the book... you can't help but travel her journey with her! I admire Kelle's willingness to bare it ALL for you, something I try to do in my own writing. I have a lot of respect for Kelle for her bare-it-all attitude in her writing. In this memoir, she shares her absolutely most ugly moments. She shares her awkward moments, too. And she share her healing.

If you're not the mother of a child with DS, reading this book is as close as you can get to going through the experience, without actually going through it. And if you have gone through it, you may find it validates a lot of your own feelings along your journey. That may be the biggest service of this book, relieving the Momma Guilt so many women are carrying.

All that said, Kelle admits she is overly emotional. It absolutely shows. This is one woman who is seriously over the top with emotions. It makes her seem a bit more like a character, though every bit was believable as non-fiction. I can relate to Kelle in a few ways, though. We're both bloggers. We're both mothers of multiple children, including babies with DS. I can relate to her desire for ceremony. And what's not to love about people that are very "high on life?" She appreciates the benefit of the hard times and hard emotions. She sees how the push us to grow, to bloom.

I enjoyed crying along with Kelle in many of the chapters, even full-on silently sobbing while my own son with Down syndrome slept nearby. But I also found myself a bit jealous of Kelle's tribe. I certainly have friends that love me, but I've never felt as supported as she presents herself to be in this book. I don't think I currently have a "drop everything" friend... ok, maybe one (and I love you, sis!). I got lots of offers of support when we got the news. They were all encouraging words and several offers to connect me with someone who knew someone who had Down syndrome. I don't have friends that drop everything to fly across the country to be at my side for days, possibly weeks at a time.

Also, Kelle is a great photographer. This book is chock full of beautiful photos of her family. Her children are adorable. As you read about major events along her journey, you get to see those actual events! And if you enjoy the book club thing, this book includes a questions for discussion section.

From reading reviews on Amazon, it seems people had some other expectation from this book. It is a memoir. It is Kelle's memoir of her first year as the mother to a child with Down syndrome. This book is not about Nella. This book is not a reference source for new parents. If you enjoy reading memoirs, though, and living emotions vicariously, then you will love this book!

You don't have to take my word for it, though. Here are the other blog stops on the tour this month:

Writer and photographer Kelle Hampton chronicles the simple joys of motherhood and daily life on her popular blog, Enjoying the Small Things. An advocate for individuals with Down syndrome, she has been honored by both the National Down Syndrome Society (NDSS) and the National Down Syndrome Congress (NDSC), receiving the NDSC National Media Award in 2010. Kelle lives in Naples, Florida, with her husband, Brett; their three children, Lainey, Nella, and Dashel; and her stepsons, Austyn and Brandyn.

Friday, April 26, 2013

Medicating our Babies

First, I feel that I should explain: This is not a post about giving Benedryl to babies to get them to sleep or even rubbing whiskey on their gums for teething. No, this is about actual medication needed and benefiting our babies and how the hell to dose it out!

As of this week, Spencer takes 4 different medications. In the evening he takes Oxy Powder, that was how it started. He's been known to drink it from a ramekin or take it from a syringe. He started out being very "good" at taking his medicine. Some nights were more difficult than others. Then we added his Atenelol (half a pill), which is a beta blocker he takes for his hyperthyroidism. I just add it in with the Oxy Powder.


Yes, I have to first cut a pill in half, then crush it.
I put it into a ramekin and hand-express breastmilk into it.

In the morning, now, he takes 1.2mg of Loratadine (Claritin) as well as half of a baby aspirin (also cut and crushed like above). I can mix the orange powder into the loratadine and still even add breastmilk to make it a little less thick and hopefully easier to take.

He is figuring out that medicine can be gross. The Atenelol does not taste good. Sometimes we can trick him into opening his mouth for an imaginary teething tablet. I've sometimes had luck getting him to look UP at a toy or book and sneaking the syringe into his mouth. Sometimes we have to literally hold his arms down and pry his mouth open. It pains me to write that.

I really, really hate having to be so forceful with him. I hate it. Its awful. :( But... without the Oxy Powder, his bowel movements make him scream and cry. He needs the thyroid medication to keep his hormones in check. Without the allergy medicine, his eyes get glued shut and he can barely breathe. And he definitely needs to take the aspirin, for 6 months. It is to prevent any clotting while his heart heals over the device used to close the hole in his heart. (I'm sure I'll write about THAT sometime, too.)

What to do? No, seriously, what do I do? I'm really looking for some solutions here. What has worked for you? When Tyler was little, I'd dangle a maraschino cherry behind the spoon of nasty medicine, a promise to get that taste out of her mouth immediately. But Spencer isn't old enough to eat a cherry, nor to understand the bribe deal.

How do you help the medicine go down?

Wednesday, April 24, 2013

Friday, April 19, 2013

The Downs Lady

Aside from "The Downs Lady" not being proper people-first language, there is something odd about becoming "that Down syndrome Mom" or whatever you want to call it.


I realize we (or at least I) organize data. If I see a photo of an otter, I share it with my friend that loves otters. I have a couple friends with whom I share cool shoes posts. My friends share spider posts with me, knowing I'm a tarantula buff. Now, however, I get all the DS news.

If someone with DS is wronged in a restaurant and some waiter stands up for him, I see that news clip at least in several of the DS communities to which I belong. But then I also get shares from many people. Funny, I don't think anyone has shared any of the stories of the adult with DS that was killed by a police officer.

Its just... weird. I mean, I get it. But its weird to just have a bunch of people showing me every DS item that happens across their screen. I feel like I've now become "The Down Syndrome Lady" to each of those people.


Please don't stop half-way through this one!


That was the entirety of my ideas I'd jotted down for this post several weeks ago. And then this evening... it all came around full circle and somehow feels extra right. A bloggy acquaintance just got the diagnosis for her infant son, he has Down syndrome. We got our diagnosis while I was still pregnant, but I otherwise know the position she's in. It seemed to me that everyone I knew knew someone touched by DS. They were all giving me names and phone numbers of people to contact for support. I know they all meant well, but I had to work up the nerve to attend a Down Syndrome Association meeting, I sure as hell wasn't up for calling a complete stranger! (And I'm an extrovert!)

But now I'm on the other side of that phone / web. I've got a year of being a mother to a child with DS under my belt. And this new momma felt comfortable contacting me. I felt excited! I have lots of information to share! Yes, I would love to discuss our babies! She and I have barely crossed paths in blog carnivals, so I was not a friend. I was definitely an acquaintance. I'm so glad that was enough!


I don't feel like I write about DS on my blog a lot, but I definitely consider myself an advocate for awareness! The same carries over to my Facebook page. And if that makes parents feel comfortable reaching out to me for support, that is awesome and totally outweighs the weirdness of being told about DS in the news 20 times every time something happens!

Please, feel free to share with me anything that you feel is share-worthy. And by all means, PLEASE, feel comfortable reaching out to me regarding any topic on which I'm obviously knowledgeable and/or experienced! You can contact me on my "Contact" page, through my Facebook page, or even through a comment here!

Wednesday, April 17, 2013

Mamatography 2013 - Week 15

Day 106 - April 7



This is my favorite shirt. I tie dyed it while pregnant with Sasha. I'll miss it when Spencer outgrows it and will definitely save it for grandbabies!

Friday, April 12, 2013

Adjusted Expectations

Everyone has always been so impressed with my attitude toward Spencer and his diagnosis. I've insisted that I expect typical milestones from him, and that we'd adjust and work as necessary. I'd been told that the first year was much like any other baby. We were working toward the usual milestones. Spencer had very few hurdles during that first year, considering he has Down syndrome.


Lennon (16mo) standing next to Spencer (15mo)

I recently saw Spencer next to typical babies at 14 & 16mo. One of them (not pictured) was, admittedly, larger than average. Still... it was a bit of a shock to see these big babies up and walking next to him. I mean, I know Sasha walked at 10 months and Tyler at about 13, but I don't really compare. I just watch Spencer working on his milestones and am proud. It was almost a slap to the face, a wake up slap. A couple days later we were at a meeting with just babies that have DS and everything just seemed so much more "normal." These babies are all close to Spencer in age and they are all hitting their milestones in their own time. We all support each other and celebrate each other's kids' milestones, even the ones that our own babies haven't reached yet. Just having them all be smaller, though, was a big thing. They're all good sized (healthy)... based on the Down syndrome growth chart.


Lily is 3 weeks older than Spencer.

So I've had to adjust my expectations. Spencer is still catching up with talking after having fluid in his ears. He is going to Speech Therapy once per week and it is going great! He is going to Physical Therapy once per month to just watch his development. He needs a little work due to his hyper-flexibility. His knees and feet point out. He often stands from a squat. Its impressive, but they want him to kneel then stand, in a healthier way. We're going soon for an Occupational Therapy evaluation to see if he could benefit from help there, too. In case you aren't familiar with OT, it helps the client / patient with daily life skills, even adjusting the environment if that is what is needed.

Wednesday, April 10, 2013

Mamatography 2013 - Week 14

Day 99 - March 31



Easter Goodies: Sasha's basket put back out, Tyler's lost bucket
replaced and Spencer's first basket (he was too young last year).

Tuesday, April 9, 2013

Family Comfort Food


Welcome to the April 2013 Carnival of Natural Parenting: Family Recipes

This post was written for inclusion in the monthly Carnival of Natural Parenting hosted by Code Name: Mama and Hobo Mama. This month our participants are sharing their recipes, their stories, their pictures, and their memories.

***

My mother used to have me cook a double batch of Tuna Casserole while I was at her place, and then send half of it home with me. In my book, it is the ultimate in comfort food, without turning to sweets. We considered it very decadent and no, it is not a healthy recipe. Sometimes you just gotta live on the wild side! This recipe was my Granny Green's and probably my great grandmother's before that.


  • 2 Cups Macaroni
  • 1 can (7oz) Flaked Tuna
  • 1 can (10.5oz) Condensed Cream of Mushroom Soup
  • Salt
  • 1 Cup Diced Velveeta®
  • 2 Tbsp Butter
  • 1 Cup Milk
  • Pepper

Cook macaroni (to almost done). Add Velveeta®, tuna, butter, soup and milk. Add salt & pepper to taste. Bake at 350° for 30 minutes.

I love to eat it with Club® Crackers! It reheats well with a little milk added. I also prefer to add EXTRA Velveeta® to my own bowl, especially when reheating. You can actually substitute Cream of Chicken Soup and Canned Chicken for an entirely different flavor.

Do you have an old family favorite comfort food recipe?



***


Carnival of Natural Parenting -- Hobo Mama and Code Name: MamaVisit Code Name: Mama and Hobo 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:



  • Three Favorite Family Recipes: To Eat, To Wash, To Play — Kristin at Intrepid Murmurings is back with three family favorites: gluten-free vanilla orange sugar cookies, DIY powdered laundry detergent, and something fun for the kids: homemade "Flubber"!
  • Black Bean Soup Forever — Mercedes at Project Procrastinot shares a soup recipe that's been around forever.
  • Do you want to know a secret? — SRB at Little Chicken Nuggets lets go of her mac and cheese recipe, a comfort food favourite for friends and family for years.
  • Creating Our Own Family Recipes — Emily at S.A.H.M. i AM shares how she's trying to create meals that her girls will want to pass down to their own children some day.
  • Vranameer Chicken: A Family Recipe — Luschka at Diary of a First Child shares a recipe that reminds her of childhood and more specifically, of her mother. It's a South African take on sweet and sour chicken and what it lacks in healthy it makes up for in tantalising to the taste buds.
  • One Recipe, Three Uses: Dishwasher Liquid Detergent, Dish Soap, and Hand Soap — If you love saving money and time, you'll love this green recipe from Jennifer at Hybrid Rasta Mama, guest posting at Natural Parents Network.
  • Our Family's Favorite Pies — Abbie at Farmer's Daughter shares recipes and tutorials for the quintessential American dessert.
  • Deliciously Easy Crock Pot ChiliLactating Girl shares her crock pot chili that is not only quick and easy, but awesome.
  • All-Purpose Crock Pot PorkCrunchy Con Mommy's simple "recipe" for cooking perfect pork in the crock pot is for whatever mood her family is in!
  • Family Rules: A Recipe for Harmony — Cooped-up kids + winter weather + frazzled parents can all blend together into a recipe for disaster. Dionna at Code Name: Mama shares what brought back the peace in her house.
  • Favorite Healthy Family Recipes — Deb Chitwood at Living Montessori Now shares her family’s healthy eating experiences along with links to free printable vegetarian recipes that her family has created with love.
  • Grandma's Banana Bread — Megan at The Boho Mama has early and fond memories of her grandma's banana bread. It's love in a loaf!
  • Family Comfort Food — Jorje of Momma Jorje shares a recipe handed down that moms have made for their kids, for regular meals as well as to comfort.

Friday, April 5, 2013

Myringotomy

Spencer failed his 7 month follow-up hearing test last year. (It is actually 6 month, but everything has been a month off after staying in the NICU.) We spoke to the pediatrician about it and thought it might just be congestion. We waited 6 weeks and revisited the audiologist. Meanwhile, we started noticing the he wasn't copying any consonant sounds. He also yelled a lot back then. Spencer's second test was even worse. The audiologist couldn't even see his ear drums due to his tiny ear canals.

We went to see our Ear Nose & Throat specialist. He found a lot of fluid in Spencer's ears and recommended a very common procedure: myringotomy (tubes). Strangely, this procedure didn't scare me nearly as bad as the idea of a heart cath (which we narrowly dodged... for the time being). The procedure is so common that I had already researched it and was expecting the recommendation.


Spencer, awaiting his Myringotomy last November...

Wednesday, April 3, 2013

Mamatography 2013 - Week 13

Day 83 - March 24



Have I mentioned I'm a sucker for "Daddy Pics?"
I'm actually a sucker for Daddy bonding moments. They make me grab the camera.

Tuesday, April 2, 2013

SUPPORT for Breastfeeding!

On Thursday, bloggers from around the world came together in a show of support for breastfeeding mothers. New mothers have enough challenges without having to feel guilty for how they feed their baby, especially when they are choosing the most natural of means - breastfeeding.

Breastfeeding at 2 Months2 month old Sasha at my breast, swaddled

Over the last few days there has been a lot of heated debates, controversial posts, and social media outcry against the position that the Weston A. Price Foundation takes on breastfeeding. While they do present sound information on the ideal diet for breastfeeding mothers, they do so in a manner that brings about guilt, fear and confusion.

Related Posts Plugin for WordPress, Blogger...