Remember the Siblings

When I go out with my three beautiful girls, we attract a certain amount of attention. As any parent of multiple children who are close in age, I’ve gotten used to it. People can’t help but comment about any family that’s larger than 2 young children. I get it. We’re a spectacle.


I often have two of them strapped to me; which makes them appear even closer in size and age than they are. If not, I push one in a bright red stroller as she plays with the beads I attached and joyfully yells and smiles at everyone. My oldest talks a mile a minute with the vocabulary and clarity of a child twice her age. If the store has kid size carts, she’s surely pushing one with her babies in it along with a bag of grapes. They always have brightly colored bows on their heads, and occasionally match. My middle girl has Down syndrome. We’re a unique family. The comments are expected.


“Three girls? Your poor husband is outnumbered!”

“Are they all yours?!”

“Look at all those beautiful bows.”

“You’ve got your hands full.”

I also get the occasional unique comment; one that makes me genuinely smile. From people who really look at my family before speaking.

“Three girls. What a lucky family.”

“How close in age are they? You look like you’ve got it all under control.”

I don’t mind either type of comment. The vaguely observant, stereotypical, or the ones who spread joy.

Cashiers and wait staff remember us even if it’s only our second time going somewhere. I understand the urge to single out my middle girl. I really do. Shes cute. She’s LOUD. She’s got the almond eyes, low set ears and flat nose that indicate her Down syndrome; it’s hard to miss. She has an infectious smile and is learning to communicate, so she might even “say” something to you using her hands.image

But please, don’t ignore my other two. Finley is observing with her big, beautiful eyes, her own squeals of joy, and a ready smile. Kaylee Dee is a little mother hen and is dying to be noticed in public for her manners and helpfulness. Please don’t ignore them and only compliment Everly’s cuteness.

Especially don’t do this when she’s throwing a fit. I’m sure you wouldn’t praise a typical two year old while in the throes of a terrible two meltdown; please don’t tell me she’s cute when she’s trying to hit her big sister and yelling.


Inclusion is when you treat all my girls with equal attention. Not when you single out Everly and ignore the other two. This hurts all three of them in the long run. It teaches Everly that she is allowed to behave however, and be lavished with praise and even given things. And it teaches my other two that they aren’t special. They are young now, but soon Kaylee Dee will start to notice the discrepancies, and Finley will too. Resentment will build. I know you mean well, but I’m trying to raise three girls, not just one.

Our local grocer “gets” it. She acknowledges all three girls’ contribution to my family equally. She always has something to say to each one, a sticker for all three and frequently offers to help me to the car even though it’s not a store where that’s the norm. I go out of my way to be in her line, even if it’s longer.

Because as much as I love the acceptance my middle girl is always shown, please don’t forget my other two. They may not have an extra chromosome, but they do have feelings.


Buddy Walk 2015

This year we attended the Buddy Walk in Onslow County for the first time. Rain and winds were expected, as Hurricane Joaquin was expected to make landfall on Monday, but we woke on Saturday morning to sunshine! We had a great time walking with our Happily Everly After team and other members of our community. Everly even bear crawled for part of it!!


Team Happily Everly After





Everly is part of an organization called I Run 4 which pairs runner with buddies with disabilities. Everly’s runner, Nicole, lives in Canada, and dedicates her workouts and runs to Everly, and hosted her own walk for Everly, which raised money for Everly’s Buddy Walk team! They had a cold and rainy walk in Canada.


Team happily Everly after in Canada!

Thanks to the generous donations of our team of friends and family our team raised over $1,000 for our local Down Syndrome network and raised awareness for Down Syndrome!

No More Tears

Everly recently underwent her second surgery on her tear ducts. The first one was done at the end of February, right before our big move, and involved inserting a balloon catheter into her ducts, blowing it up to open the ducts and then removal of the catheter. We noticed a slight improvement in the amount of goop she was accumulating, but it still wasn’t fixed.  Her tear ducts were temporarily open, but they soon closed back up and we were back to square one.we were referred out for surgery again once we got settled in our new home and this time they decided to do the balloon catheter and leave a stint in to hold the tear ducts open. David was in California training, so Kaylee Dee got to have a sleepover with Great Grandma Dee and Granddaddy Don, and just Finley came along for the surgery with me. image

All packed, and ready for her first sleepover.


Sweet snuggles way to early in the morning before surgery.

After checking in to the surgical center, we were shown to a room and waited back there to be called for surgery. Everly quite enjoyed all the attention she was given as nurses and doctors kept coming in the room to get her prepped. image


Last minute “chat” with Finley. Kisses and hugs were shared.

After a fairly short surgery, we had a long wait in recovery due to excessive nose bleeds, and some bad reactions to the anesthesia. Finley was carted around by a very helpful nurse while I calmed Everly down and nurses worked to get the bleeding to stop. After about 2 hours we were sent home. Kaylee Dee was very excited to see us again, and wanted to help with everything when we got home. So far it’s hard to tell if the surgery made a difference. Her eyes still seem watery, but right now I also have to put drops in 4 times a day. Luckily, there was no bruising under her eyes, and she was back to her spunky self by the evening. image

Celebrating a Day in our Life with DS

In preparation for World Down Syndrome day I’m participating in the Down Syndrome Diagnosis Network(DSDN) campaign to raise awareness and give a little glimpse into the lives of people and families with Down Syndrome.

   In many ways our lives are typical. Everly loves playing with her big sister, Kaylee Dee.  Most mornings I find these two snuggled up in Everly’s crib giggling and playing hide and seek.  They are each others biggest fans, and I am always amazed at how much they have each grown this past year.  I see my rambunctious 3 year old encouraging her little sister, and eagerly learning ways she can help Everly become independent.  I see Everly gain strength and communication skills as she tries desperately to keep up with her big sister.  Everly plays with her babies and learns new signs and words each day. The joy in her face is nothing short of illuminating when she interacts with us.  I love watching her hug her babies and sign “night, night” to them, only to drop them minutes later to scoot across the floor to grab a couple legos to bang together. Her curiosity inspires me.

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But, there are some areas where our daily lives veer off the “typical” path; they bring people into our lives that we would never have the chance to know if it weren’t for DS. They bring moments of joy and celebration that are often overlooked in families.

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   Because of Down Syndrome, we have 4 wonderful women in our lives that we otherwise wouldn’t know. We spend time each day working on physical, speech or occupational therapies. Calley, Amanda, Rebecca, and Elizabeth worked hard to bring out the best in Everly at each of her therapy appointments. They are the building blocks in our celebrations as Everly reaches milestones, even now that we’ve moved.  They not only helped Everly, they encouraged her spirit and independence with each new skill.

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We may have moved, but their work built the foundation on which Everly will thrive. So, celebrate we will. I’m sure to some our lives look busy, hectic, or even frustrating. Because of Down Syndrome my day to day life is filled with more connections, love and celebrations, both large and small, than it ever was before.

The day a bunch of internet strangers said my daughter was beautiful

Recently I uploaded a picture of Everly to a group on Facebook looking for opinions on the fit of a Beaufort Bonnet I bought for her.  What I expected was comments about how the hat fit; if the brim was too large, or if I needed a different size. What I received filled me with joy.  They called her things like perfect, beautiful, precious, doll baby, and adorable. Words that I’ve thought applied to Everly since the day I gave birth, but not ones that I expected the world at large to attribute to her.

You see, this group of moms has a love of smocked clothing and boutique, heirloom dresses in common. Not Down Syndrome.  I’ve shared her photo countless times on my Down Syndrome support groups; this is the first time I shared it in a different type of “mom group”.

They didn’t see her Down Syndrome. They saw Everly; my sweet girl, with the big infectious grin, and sheer delight with life.

So, thank you, internet moms, for seeing the beauty where many may not.  For seeing just a little girl, in a large brimmed bonnet, and not her diagnosis. Thank you, for calling her beautiful.

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A letter to myself on diagnosis day

Looking back on our diagnosis day is quite surreal at this point. The feeling of having my perfect world shattered is one that is hard to describe, and painful to remember.

I remember being scared that we couldn’t handle raising a child with special needs. If I could write myself a letter, I’d say;

Not only will you handle it, you will find your voice, and your passion in it.


I worried that she wouldn’t be the little sister I had imagined for our older daughter, Kaylee Dee.

They will have a stronger bond than you ever imagined. They will be the perfect combination of silly and sweet. They will encourage each other and make each other more compassionate.



I worried about my marriage.

It will be hard, but you will get through it and come out stronger in the end. You will see your husband become her biggest advocate.


I worried that she wouldn’t look like us, and that people would stare.

Let them stare. But not because she looks different. Because she has an infectious smile, and lights up a room.


In those days following our diagnosis I worried and wondered about our future. About our ability to parent this sweet girl; about whether or not we even wanted to parent this little girl that was growing inside me. If I could have said one final thing to myself in those days it would be:

Keep your heart open, and your dreams big. There is nothing that Everly won’t be able to do without your help.

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Breastfeeding, Milk Sharing, and Down Syndrome

Our breastfeeding journey started out different than I imagined at the start of my pregnancy. Having nursed Kaylee Dee for 21 beautiful months I felt SURE that I would nourish her younger sibling just as effortlessly for just as long, if not longer. Enter: Down Syndrome diagnosis coupled with duodenal atresia, and I knew Everly and I would take a different path. I would do whatever it took to make sure she was given that precious liquid gold, so the day she was born I kept bugging the nurses to make sure they didn’t forget to bring a hospital grade pump to my recovery room. In between visiting Everly in the NICU, I pumped. Every 2 hours, while waiting on her to come out of surgery, while David and Kaylee Dee visited, in between going upstairs to gently hold her hand and caress her little face in her incubator, I pumped. I felt helpless and like every aspect of being a mommy had been taken away from me. l may not have gotten to nurse my babe upon birth, or cradle her little body, or sleep with her next to me in a little sleeper I had carefully chosen. I didn’t get to give her sponge baths or gently clip her nails, but I could prepare for the day she was able to eat. So I pumped around the clock, setting my alarm, and buzzing the nurses in the middle of the night every 3 hours to bring Everly’s carefully pumped and labeled breastmilk up to the freezer in the NICU.

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One very excited new big sister, helping mommy pump in the hospital. 


I continued this when I was discharged and moved into the Ronald McDonald House of NWF, using the hospital grade pump in their Nursing Nook, and using one of the three pumping rooms they had in the NICU. I was getting an impressive 40-60 ounces of breastmilk per day, just building up a stash for when Everly was finally able to take her first tiny bottle of colostrum when she was 15 days old. She was in the NICU for 32 days while I continued exclusively pumping, because while the NICU doctors are VERY pro breast milk they are NOT pro breastfeeding. Down Syndrome also adds a challenge to breastfeeding; Everly was born with low muscle tone, so low in fact that her speech therapist labeled it as a zero(as in none) in her cheeks, which of course meant that she struggled to even have the stamina, or a proper latch. 


Everly’s first tiny bottle at 15 days old in the NICU. 


We came home to speech therapy where we were given a Bionix special feeding bottle to help teach Everly how to eat correctly, and which muscles to tone up in order to have a good latch. After being home for about 2 weeks I got mastitis which tanked my supply. It got down to only being able to get 6 ounces a day. I was so thankful for the large stash I had in the freezer to hold us over while I got my supply back up using different supplements. All told, I’ve used Reglan(made me exhausted), Fenugreek, Mother Love Tincture, Mother’s Milk Tea, Blessed Thistle, Mother Love Capsules, Domperidone, and lactation cookies, which worked wonders for a short period of time.


A shot of just some of the supplements I’ve used.


I was able to get my supply back to either the full amount she needed a day, or just 5 ounces shy of her intake. Around 5 months old I ran out of my stash which was holding us over and found out about Human Milk for Human Babies, an online community for milk sharing. Everly has been the recipient of donor milk from several generous women. As she grew stronger she was able to nurse occasionally, but never as her only source of nutrition, since she still lacked the muscles to nurse efficiently.

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Down Syndrome did not stop this sweetie from eventually getting the hang of it.

I kept up my pumping routine until just 3 days short of her turning 8 months old. A feat that I’m both proud, and disappointed in. I worked hard, pumping at work, in the middle of the night, and all throughout the day, while trying to come up with different ways to entertain 2 little ones when I couldn’t get up and hold them.


Pumping in my office at work. I got to provide Everly with nourishment AND get out of taking my kiddos to recess!! Woohoo!!

I didn’t make the choice, and neither did Everly, to stop breast-feeding, which is why I’m disappointed. Today I pumped 4 times in the morning each time without producing a drop of milk. My body finally gave in and the supplements quit working. We still have donor milk, and will hopefully continue to receive breastmilk until Everly is at least 1, if not for longer.

 I can’t speak enough about the wonder that is donor milk. We’ve been the recipients of milk from a sweet first time mother, who had her own early breastfeeding struggles(lip tie), but pushed through and is still going strong, a mother who lost her dear, sweet baby shortly after birth and continued pumping for months as therapy, a woman from a nearby town with some extra ounces to spare, and from a mother, Adina Pop, whom I met on HM4HB who I now consider a friend, who provides milk for 2 babies in addition to her own. She is a rockstar, and I am so glad I found her. I’ve been given support and advice on a Facebook site called Hot Moms Breastfeed; a title well deserved by the women on that page, because they are beautiful, both inside and out. All of these women have reminded me in the most raw, natural part of mothering, that it takes a village, and I will be forever grateful that they became part of my village, for however long or short they were there.