Special Needs Spotlight || Paisley

Hello! My name is Katie and I’m a wifey to one ridiculously good looking man named David and mommy to two pretty princesses named Paisley [2] and Ivory [7 months]. My hubby and I both grew up in Wisconsin, met at college in Australia, and live in California. We could eat Mexican food every night of the week and our favorite thing to do in all the world is play with and love on our kiddos. Ivory is our redemption baby, and she is the sweetest, squishiest little thing there ever was! She was the best surprise [!!] our little family could have ever been given. And Paisley is our miracle baby [she will be 3 in January, but she will always be my baby!]. After a long and frustrating road of tests, procedures, hospital stays and misdiagnoses, Paisley was ultimately diagnosed with Childhood Interstitial Lung Disease [chILD] at six months of age. This is a group of very rare lung diseases with twenty different variations. The prognosis for some of the variations is unknown while others require lung transplants, and some are fatal. After having lung surgery at nine months of age, Paisley was diagnosed with a variation known as Pulmonary Lymphangectasia [PL]. This variation of the already rare group of Childhood Interstitial Lung Diseases is extremely rare. Paisley’s doctor, who specializes in chILD, has only seen PL two other times across his career. There is little known about the disease, and its overall prognosis has been poor. Yes, Paisley has always struggled with the symptoms of her diagnoses, but she has never once let them define her. Instead she has always risen above them and become the sweetest most beautiful little ray of sunshine. Even in the darkest of valleys and longest of nights, my sweet little sunshine always shines so, so brightly.

You can join us on our miracle journey with Paisley by following her page facebook.com/prayingforpaisleymae , check out pictures and updates on our Instagram pages @katie_ewing / @davidewing , and read her blog prayingforpaisley.blogspot.com … We love meeting new friends and covet every prayer for our sweet girl!

***************

Miggy: Hi Katie! Thank you so much for being here today and sharing your family’s story with us. First, can you take me back to the day you knew you found out your daughter was born with a variety of special needs? Was it during an ultrasound, shortly after birth or sometime after that? Do you remember how you felt?  Can you compare those first thoughts and feelings with how you feel now?

Katie: On July 18, 2012, I had my 12 week ultrasound. My husband and I had been looking forward to this day for weeks because we knew we’d hear the heartbeat for the first time and our little babe would have traded her bean-like features for ones that resembled a little human – complete with tiny fingers and toes. Little did we know this day was going to be much more than a routine doctor appointment. No, this day was the day we were going to take our first steps on a big, crazy, messy, beautiful, devastating, amazing miracle journey with our Paisley Mae.

After the ultrasound our doctor went on to tell us that some major problems and abnormalities had been detected. Leaving all the specifics and medical terms aside, basically we were told that our baby would most likely die in utero, and if she did survive the pregnancy, she would be born with a chromosomal syndrome, genetic disorder, or severe heart complications–most of which were “not compatible with life” and would result in fatality shortly after birth. Our excitement quickly turned into devastation. I remember sitting in that cold office trying to listen to everything the doctor was saying, but hearing nothing. Every word that followed her initial, “unfortunately, I have some bad news …” just floated aimlessly in the air before falling to the ground. I was too numb to catch them, absorb them, or understand them.

Following that initial dose of negative news, the remainder of my pregnancy was filled with non-stop specialist and fetal monitoring appointments, where on several occasions it was suggested that we terminate the pregnancy. It seemed as though each new visit brought with it another negative report. We accumulated a laundry list of diagnoses about our precious girl across those nine months–some of them turned out to be wrong (like spina bifida or missing toes), some of them turned out to be our reality, and perhaps the hardest of all were the many diagnoses that would come after her birth.

I carry many of those same initial thoughts and feelings with me today, three years later. I still have doubts, fears, frustrations, heartache, and the burning question of, “Why?” I suppose those feelings will never subside as long as I have to watch my child in pain, undergo surgeries, sleep in hospital beds, be fed through a tube, etc. But the difference between July 18, 2012, and today is that Paisley is actually here with us, in all of her sweetness and beauty and infectious joy! When I see her I don’t see any diagnoses. I see a girl who is not only fighting, but overcoming every single obstacle in her way. What a gift to be her mommy! Truly, the joy that comes from loving her far outweighs the pain and heartache that come from fighting through her disease.

Miggy: As you said in your email your daughter Paisley has quite a few diagnosis, but her largest issue currently falls under the umbrella of Childhood Interstitial Lung Disease. She also recently underwent open heart surgery for congenital heart disease. Will you please educate us about Paisley’s needs and how they affect your and her day-to-day life? I’m sure this is not a short answer!   

Katie: Because there is no cure for chILD/Pulmonary Lympangiectasia (yet!), in between all our bubble blowing and dance parties, our days look like managing and treating the symptoms associated with it. Management has changed in form over time, as she has outgrown some challenges [hip hip hooray!], while other challenges have worsened, requiring more aggressive forms of treatment. For instance, you mentioned her most recent surgery that corrected the multiple heart defects that she has had since utero. This surgery took us all the way from sunny California to chilly Wisconsin for two months, in fact, we just got home this week! It was one of the hardest, craziest legs of our miracle journey so far–especially with some scary complications that followed–but we are so thankful Paisley’s “Heart Day” (affectionately named by Miss Paisley herself!) is behind us.

The biggest need that has most affected our day-to-day life has been Paisley’s feeding. From her very first days, feeding has been a challenge for Paisley due to the state of her lungs, heart, kidney, etc. At six weeks old she had g-tube surgery which enabled her to receive all of her nutrition through a tube rather than having to work so hard to eat orally [and allowed us to take her home for the first time after a long seven week NICU stay!]. Unfortunately her severe reflux caused most of her tube feeds to come right back up. It was a daily battle to try to maintain nutrition and growth. For the first 18+ months of her life our lives revolved around her g-tube feedings and her reflux episodes. On top of this, her lungs were in such a fragile state that the vomiting would cause severe coughing episodes. Watching Paisley turn blue and fight for breath was common, but something I never grew familiar with. Over the last year, though, her reflux has dramatically improved, and we have been able to switch from her being fed via a slow drip feeding pump machine, to now being able to do bolus feedings (ie allow gravity to push the food through her stomach). It’s been life-changing and has given us so much more freedom!

And, of course, as any special needs parent can relate to, our day-to-day life has always looked like lots and lots of doc appointments! Thankfully, just after Paisley’s first birthday we finally began to receive in-home therapy. This changed our life drastically! Instead of going to the hospital three times a week for therapy [on top of approximately one gazillion other hospital appointments!], she now has amazing therapists coming to our home, working on physical, occupational and oral feeding therapies.All the work that goes into caring for her special needs each and every day is completely overshadowed by all the fun and wonder she brings to each and every day!

Miggy: What are the biggest worries you face for Paisley? Conversely, what are your hopes and dreams for Paisley?     

Katie: There are so many unknowns about Paisley’s lung disease, so if I let my mind wander just long enough I can begin to worry about what the days ahead may look like for her. So, instead of letting my mind focus on the unknowns of the future, I do my best to focus on her sweet little face, right here, right now. And with a face as cute as hers, I’d say that’s the best job in all the world! She keeps me present. She keeps me hopeful. And, truly, she keeps me worry-less.

One of my dreams for Paisley is that she will live a long beautiful life – using her journey to help others. I dream of the day she will be able to share her story with people–from her own perspective–and bring hope to those who find themselves in hopeless situations.

A more immediate dream that I have is for Paisley to eat a big ol’ cheeseburger! Since the day we had her g-tube placed, I’ve had a picture ingrained in the back of my mind of her sitting at the kitchen table–tube free–chowing down on a cheeseburger with ketchup smeared all over her face asking for, “more please!” … Yup, we believe from the tops of our heads to the tips of our toes that one day soon our Paisley girl is going to eat everything by mouth and we can say bu-bye to her g-tube!

Miggy: You mentioned that just by looking at Paisley you can’t really see that anything is different about her. I know that having a child with invisible needs can be a challenge on it’s own. How can people best approach or respond to Paisley? Is there something you wish other people knew so as to avoid awkward or hurtful situations?  

Katie: Every single medical professional that meets Paisley is always blown away by her. I’ve lost count of how many times we’ve heard, “I can’t believe what I’m seeing. This is not the girl I expected to see or the girl I just read about …” when they meet her for the first time. I’m constantly amazed by the beautiful strength Paisley carries and the sweet joy she brings to everyone who comes in contact with her, they far outweigh any physical limitation she has. I’ve sat through countless appointments where specialists pick apart everything that is “abnormal” about Paisley, both visible and invisible. As hard as those appointments are, Paisley has proven time and again that a strong spirit can fight much harder than a strong body.

Because of Paisley’s sweet demeanor and outgoing personality (not a shy bone in her body, I tell you!), people approach her constantly and respond to her with smiles and melted hearts! However, we have definitely experienced staring and finger pointing while I’ve given her g-tube feedings or during major coughing/choking episodes in public. The stares and points used to really bother me, but I’ve grown so accustomed to them now that it doesn’t even phase me (most of the time!).

One thing I’ve found across this journey is that silence from people can often be the most hurtful. I’ve watched people avoid us–whether they know us or not–simply because they didn’t know what to say. Sometimes a simple, “How are you?” or “I’ve been thinking about you!” from someone you know instead of avoidance … or a, “Wow, what pretty pink glasses she has!” from a stranger instead of stares can make all the difference. I think it’s human nature to feel like we have to say just the right words when we see someone walking through a hard time, and when we can’t find those right words we think it’s better to just be silent. I’ve been there. I’ve done that. But I can tell you that being on the other side of someone’s silence is one of the most isolating and lonely feelings.

Miggy: What is the biggest lesson you’ve learned since becoming Paisley’s mom?

Katie: There are so many things Paisley’s sweet little life has taught me. Paisley inspires me in every aspect of life. Every day. She inspires me to choose joy. Every day. Watching her little life reminds me that we don’t always get to choose our circumstances, but we most definitely get to choose how we respond to them. She inspires me to choose joy. Every day. Every time. Every circumstance. Every challenge. Every new diagnosis. One of my favorite things about Paisley is that she brings joy to every person she comes in contact with. It’s more than her cute little personality wrapped up in that adorable little squishy face. It’s an inner strength and joy and peace that she carries. It’s undeniable and she sprinkles it everywhere she goes. The kind of strength she showcases is something so special. It’s the kind of strength that can only be realized within the kind of impossible battles she’s faced.

Becoming Paisley’s mom has also meant becoming a special needs mom, and that alone has opened my eyes and my heart to a whole new world I really never knew existed. I’ve come into a  community of some of the bravest, strongest, and most inspiring people on planet earth. Although each of our battles are different, our battle cries are the same–we are crying for our children. It’s an honor to fight and work and raise awareness with the amazing army of special needs families!

***************

Well Katie I think it’s safe to say that Paisley is a little heart melter! What a doll. I love what you said about Paisley inspiring you to choose joy everyday. It is easy to lose perspective on life and kids are some of the best teachers in this aspect. And YES to being a part of the amazing special needs community. I too was pretty oblivious to this world and now consider it such an honor to be a part of it all. I also relate with what you said about having once been on the other side of the special needs coin, when you didn’t know what to say or what to do…and so you said or did nothing. Most of us special needs parents remember what it was like not to be a special needs parents and because of that I try to extend grace and understanding to people around me. But I also try to spread education and awareness because now I know. And like you said, now that you’re on the other side of that silence, it can be lonely and isolating. Thank you for sharing that… I hope your words will inspire someone to reach outside of themselves next time they see a special needs family and aren’t quite sure what to do or say. Saying anything with a smile and kindness in your eyes says it all as far as I’m concerned.  Thanks again Katie, and please give your beautiful girls squeezes from me! 

Thanks for reading you guys! As always if you or someone you know would like to participate in the special needs spotlight please email me at thislittlemiggy at gmail dot com.