Positively Engaging with Parents of Children who are “different”

Hello! Glad you’re here!

If you haven’t heard, I am the proud mama of my little man, Ezra. He is everything to me. My sun, moon, and all the stars.

He’s is 8 months old, sitting up on his own, loves to grab Mommy’s hair and Daddy’s glasses, and giggles while he is “dancing” or “flying.” Peas are his favorite food and he hates naps. He refuses to crawl, and prefers to roll everywhere he wants to go. He is fascinated by our cat and is obsessed with our dog.

He also has a condition called metopic craniosynostosis. Simply put, his forehead skull bones fused too early causing him to have a ridge on his forehead and a head that’s shaped like a triangle.

Now normally, you can’t really tell anything is different. Many people don’t notice his head at first, if at all. The craniosynistosis doesn’t affect his every day life in the slightest and mostly doesn’t affect my partner and my life on a daily basis. Of course we still worry, what parent wouldn’t? But we try to live as normally as possible.

I was inspired to write this post after a seemingly insignificant exchange between myself and a nurse. I was originally going to address this post to that nurse, but after thinking about it, I decided to open the discussion to everyone who will ever encounter a child who is different.

The backstory

About a month ago, my little guy was really sick, had a fever of 104.6. I hurriedly gave him some ibuprofen and rushed him to the Emergency Department of the children’s hospital were he receives all of his specialized care, thinking it would be easier because they have all his records.

We were taken back immediately because a 7 month old with that high of a fever is a top priority. The first nurse was very sweet and nice, asking all the perfunctory questions medical facilities do and oooing and awwing about how cute Ezra is.

Which is why I absolutely know she didn’t mean anything by her comment. She saw Ezra’s forehead, ran a finger down it and asked, “is it always like that?”

I nodded and explained, “yes, he has craniosynostosis.”

The nurse nodded and responded “Oh, well he looks really good, most kids with that look much worse.”

Her comment was said so off-hand that I don’t even know if she or my partner really paid much attention to it. And the nurse was not necessarily wrong. My baby DOES look pretty good.

But how good he looks doesn’t change the fact that my beautiful, perfect baby boy is going to need major surgery before he is year old to correct his head. It doesn’t change the fact that he may have a learning delay or issues with migraines because of his condition later in life. It doesn’t change the hours and days I’ve spent worrying, crying, and thinking why my baby?

The nurse probably meant to be reassuring, but to me it felt dismissive. As though my baby looks so good his condition isn’t that big of a deal. But craniosynistosis is a big deal.

My advice to everyone who may ever come across a child who is in any way different

Now that I’m a mother to a child who is different, I have a newly found perspective on ways to reassure people and especially parents. My advice is, please, please do not down play their difference, don’t try to find the “silver lining.” If the sentence starts with “well at least it’s not/is” don’t say it. I can’t tell you how many times someone has said to me “well at least it’s treatable” or “at least it’s not cancer.”

Yep. You’re right, at least it’s not worse. I feel so incredibly grateful my baby’s condition is fixable. And I thank my lucky stars it’s not cancer or something else. But, as a parent to a child who will be having a huge surgery, that is not the type of encouragement or reassurance I need.

I know I’ve been guilty of saying similar things to people over the years. And I promise I know people don’t mean to hurt my feelings or be dismissive about my experience and my son’s future experience. I am offering you an alternative view now that I have this unique insight I didn’t have before Ezra was born.

Instead, do this!

Offer words of encouragement. Something like “thank goodness you caught it early.” Or “I’m so glad he’s doing well,” and “I will be thinking/praying/hoping for his safe surgery and recovery.” “He’s really strong, he will be ok.” Or heck you can even say “I’m so sorry you and you’re family are going through this.”

You can also ask me questions about his condition. I am happy to educate people, because in my experience, no one knows what craniosynistosis is. Asking things like “what does the surgery entail?” or “will he always have this condition?” are perfectly good questions.

I love positive encouragement and inquisitiveness. It’s uplifting and makes me feel like you care about his treatment and prognosis. My family and I need all the positivity people can give us and we will gladly take it.

If you’d like to read up on craniosynostosis check out this website or this one

If you want to donate or support a really awesome nonprofit for craniosynostosis click HERE

Thank you!

Let me know what you think! What are some ways you’d like to be reassured? Have you ever had an experience similar to this with yourself or your kid?

5 Things I’ve learned about being a mom

It has been about a year now since I’ve learned I was about to be a mom.

I had so many thoughts and emotions when I learned I was pregnant. I only had 7 short months to learn how to be a mom, how was I ever going to be prepared? I was scared because holy crap, now I have to be responsible for a little human. I was overjoyed and excited to meet him.
I was nervous to give birth. I was curious about what he’d look like. Would he have his dads height? My eyes? I was overfilled with love, despite being nervous and scared and unsure how to be a mother. I knew I was going to have to learn, and learn quick.

Six months after having him, here are 5 things I’ve learned about being a mom!

1. I’ve learned you’re never going to feel ready, until you have to be, and then you just are.

I was convinced while pregnant I needed to learn as much as possible about babies and motherhood, to get his nursery together, and to purchase all the things I might want or need for him. My partner kept telling me he would get the nursery together while I was in the hospital, but I was having none of that. I needed it done before! We had to be ready! What kind of mother would I be if his nursery wasn’t done well before he came into the world? I’m here to tell you that’s nonsense. I wasn’t “ready” for him until I had him, when he was first placed in my arms with my partner, Shane, standing next to me with our sons fingers wrapped around his one. I found this to be true for every situation we’ve run into with him since he was born.

I wasn’t “ready” for the first time he was sick, until he was and we handled it. I wasn’t “ready” for him to explode out of his diaper, until he did. I wasn’t “ready” for him to get his first set of shots, until he had to get them. I wasn’t “ready” for him to grow out of his newborn clothes, or his 0-3, or 3 for that matter. I certainly wasn’t ready to hear my child has a medical condition that requires surgery. No matter what comes, I know that we will be ready when it happens.

2. I’ve learned you don’t need all the stuff they say you need for a baby.

I researched for weeks and stressed about getting my registries JUST right because I simply needed everything right away. Do you need a lot of stuff for your baby? Absolutely. Did I need 10 different pacifiers before I knew whether my kid would even use them? Nope. My little boy won’t touch them anymore and now I have a dozen of unused pacifiers, some not even opened yet. Did I need to have his crib up? Nope. He won’t sleep in his crib. We currently use it as a changing station for him. Did I need all those baby hangers? Not at all. I’m so busy and tired from being a mom, I’m lucky if his clothes make it to his dresser from the laundry basket let alone on cute little hangers. I would have done much better to wait and see what my kid will actually use before buying everything they say you need.

3. BUT I’ve learned there are some things you definitely need for the baby.

Diapers, clothes, clothes, clothes, as many blankets as possible, bottles – because breastfeeding may not work out, – wipes, a Boppy pillow, car seat, stroller, diaper bag, swing, a set of baby medicines, and thermometer were just a few on my list of things that I needed in the first few days, weeks, and months. My best piece of advice is ask other mothers what they considered their must haves and make sure you have those things! Everyone told me a swing and a bunch of receiving/swaddle blankets were a must have and dear Lord they were all right.

4. I’ve learned there is no such thing as “perfect” or the “right” or “best” way to do anything. Only what’s “best” for your baby.

There is a lot of literature out there that says what is “best” for your baby. I heard plenty from family and friends about what is the best way to feed the baby, that I should breastfeed at any cost, the hospital and doctor’s office beat “safe sleep” into my head, that I should stimulate his mind from the beginning, that I can’t give him acetaminophen until he’s 4 months old, even though that’s what they give your baby in the hospital.

My kid won’t sleep flat on his back, never has since the day he was born. I tried for the first couple of weeks and then again when he was around 3 months old to try to get him to sleep flat on his back in the bassinet pack n’ play, but he wouldn’t. He would stay asleep for tops 10 minutes. A baby that’s not sleeping means mommy and daddy aren’t sleeping which makes for a grumpy baby and grumpy parents. I gave up on trying to get him to sleep like that because it didn’t work. Don’t get me wrong, I make his sleep as safe as possible, but we’ve stopped stressing about it. After all, a sleeping baby is best. I got a certain amount of flak and warnings about his sleeping, but we do what is best for our child, and I’m sure you will and have done what is best for your baby.

5. I’ve learned there is no true love like the love you have for your child.

He’s number one. It’s that simple. I will do anything for him. I don’t even have to question the lengths I would go to for him or how much I love him. I’ve never loved anyone as much as I love him. He is my heart and my special little man.

So, those are my 5 things I’ve learned about being a mom. What are some of the things you learned as a new mom or dad? What was the BEST and WORST advice you got about having your own baby? 

Leave a message in my comments! 

Welcome back to the positive space!

I can’t believe it has been this long since I’ve posted. 2014! Wooah. A lot has changed since then and I am extremely excited to share my new adventures and I can’t wait for you to join me on this journey. I’m going to be taking this blog in a slightly different direction…….

I am VERY shortly (hopefully in the next month or two) going to be opening my own handmade business selling a line of products for your baby that are positively impacting the environment! I will be operating my own website as well as selling on Etsy!

What do I mean by positively impacting the environment you ask? I mean selling items with the impact on the environment and your baby in mind, using organic, recycled, re-purposed, or responsibly sourced fabrics and materials.

Let’s face it, for being so small, babies make a BUNCH of waste. I know because I’ve got a little nugget at home, the source of my inspiration and the most positive thing I have ever done.

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By buying and using my environmentally positive products for your little one, you can take heart knowing you are not only getting a great, unique, handcrafted baby item, you are getting one that is helping to save our planet, going green, and is either low or chemical free; making them SUPER safe for your precious little one.

So please, please stay tuned as I get closer to unveiling my business. In the meantime, I will give you all little sneak peaks into the business such as what I will be selling, where I have been learning how to set up my business, inspirations for my business, updates on my own little one, what I’ve been up to in the last three years, as well as some of my old stuff like my recipes, mindfulness, and some environmentally friendly make up reviews.

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I’d love for you to join me by subscribing to my blog and leaving me a comment! Tell me what you think, what you want to see in my shop, what you are most looking forward to in a post from me!

– Positively, Kati!