The Miracle Project – Kelly & Lia

My name is Kelly. I am the wife to my high school sweetheart, Brian. We live in Delaware with our three beautiful children, Ava (age 10), Roman (age 8) and our little miracle, Lia (age 3). I spend my weekdays being Mama to my crew, and spend the weekends as a Labor & Delivery nurse at a local hospital. Earlier this year, I decided to start sharing our journey with Lia in the hopes of connecting with other parents in similar situations, and possibly helping others who are just starting out on their own journey. We’d love to have you follow along with us on Instagram and Facebook.

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Welcome Kelly & Lia

 

Natalie: How did your journey begin with Lia? (what was going through your mind and heart when she was diagnosed, how did you deal with the fear?

Kelly: Lia was born in June 2014, full-term, after an uncomplicated pregnancy by repeat cesarean section. Lia was a big girl (9lbs 2oz) and not completely head down, so they had a really hard time delivering her. She had a lot of trouble breathing initially, but being a Labor & Delivery nurse myself, I chalked it up to her rough start and didn’t think too much of it.

At about an hour old, my son was holding Lia for the first time, and she stopped breathing and was completely blue. They immediately took her to the NICU for testing. After hooking her up to an EEG, they discovered that the apneic episodes she was having were actually seizures. She had over 45 seizures in the first 36 hours of life. Every single time, she stopped breathing completely for over two minutes and had to be resuscitated.

She had over 45 seizures in the first 36 hours of life. Every single time, she stopped breathing completely for over two minutes, and had to be resuscitated.

We weren’t even sure if she was going to make it through that first night. The next day, an MRI revealed that Lia had suffered from a stroke sometime within the last week of my pregnancy. They also had learned that Lia was born with two congenital heart defects, pulmonary stenosis and a fenestrated atrial-septal defect. I remember being in this just state of complete and utter shock. When you have a great pregnancy, and come into the hospital for your scheduled delivery, you never imagine something like that could happen to your baby.

It was extremely hard for me, because as a medical professional, I couldn’t stop thinking that the worst was going to happen. At first, I was numb. Like I was watching what was happening from the outside and not really a part of it.

The Miracle Project - Kelly & Lia's in Hospital

Everyone that came in to see me would comment on how calm I was, and how I was in such good spirits for what was happening. I went into “nurse mode” and hyper focused on everything the doctors were saying to me, and then I’d just repeat all the medical facts back to our family and friends. It was my protective mechanism. The scary, medical stuff is what I know well, it’s what I do every day in my career. It was much easier for me to focus on that, rather than the fact that the beautiful baby I had been waiting for for nine months was here and fighting for her life with so much still unknown.

We left the hospital with a tiny baby, a huge folder full of instructions.

It wasn’t until Lia’s second day of life, after the MRI results were in, and the seizures had stopped, and I was alone in my hospital room late that night, that I finally let my guard down and allowed myself to fully feel the emotions of it all.

I remember sobbing and screaming into the pillow so loudly that the poor nurse came flying into the room yelling “Honey, what is wrong?!?”.

I just couldn’t understand how this had happened. How instead of celebrating the sweet little girl that perfectly completed our family, we were holding bedside vigils and praying nonstop. Lia began to improve day by day, and after a week in the NICU, she was stable enough to go home. We left the hospital with a tiny baby, a huge folder full of instructions, and a laundry list of specialists to see and so began our Life with Lia.

Natalie: What is the name of the condition(s) that Lia has? Can you share with us a little more about it?

Kelly: Lia had an in-utero ischemic stroke in her left temporal and parietal lobes. She also was born with two heart defects, pulmonary stenosis and an atrial septal defect. Lia had heart surgery (balloon valvuloplasty) at 3 months old to correct the severe pulmonary stenosis.

At five months old, Lia was also diagnosed with spastic hemiplegic cerebral palsy as a result of the stroke. It affects only the right side of her body. She is able to walk, run, jump, climb. Gross motor is definitely her strong suit. Lia’s cerebral palsy mostly affects her right arm/hand use. She has a lot of difficulty using her right hand on its own. She also has a great deal of muscle spasticity on her right side.

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Shortly after Lia’s first birthday, I went into her room one morning to wake her up, and found her staring up at the ceiling. Her lips were slightly blue and she was very lethargic. I knew right away what was the likely cause, but told myself not to jump to conclusions. If it was a seizure, it would happen again. Well, it did, a couple of months later. An EEG confirmed seizure activity, and Lia was diagnosed with epilepsy at 15 months old. She has complex partial seizures in her sleep. She has also had one grand mal seizure earlier this year (scariest 3 minutes of my life).

She takes medication daily, and at this point in time her epilepsy is pretty well controlled. We knew at very young age that Lia was at risk for epilepsy due to the damage to her brain from the stroke, but for some reason this diagnosis was the hardest for me to accept.

Seizures are terrifying. They are always there lurking in the shadows. They are unpredictable. They steal your peace of mind, they steal your sleep, they steal your child’s milestones that she worked so hard to achieve. They are a monster, and for sure the scariest one we face with Lia.

The day Lia was born was simultaneously the worst and best day of my life. It’s the day that I started on my own journey of becoming the person I was always meant to be. I am beyond blessed to be her mother.

Lia is completely nonverbal still at age three. She has severe apraxia of speech, also a result of the stroke’s damage to her brain. Apraxia of speech is a motor disorder. The brain has difficulty planning the movements needed for speech. She understands everything we say to her. She knows exactly what she wants to say, her voice quality is fine and able to produce the words, but there is difficulty with her brain sending the message to her mouth to produce speech.

We hope with lots of speech therapy that she will start talking one day. We recently obtained a speech generating device for Lia to use. It is amazing to see her finally have the ability to communicate with us.

The Miracle Project - Lia's apraxia of speech

 

Natalie: What are some words to describe Lia? What do you love about her?

Kelly: Determined, easy-going, brave, strong-willed, beautiful. Lia loves life more than anyone I’ve ever met. Despite the challenges she faces every day, Lia always has a huge smile on her face. Seriously, nothing bothers her one bit. She is so patient and laid back. Lia works so hard every single day and never lets it show. I often times wish I had these same qualities myself.

The Miracle Project

 

Natalie: What are your worries and wishes for Lia?

Kelly: I’d be lying if I didn’t say I have a list of things I worry about for Lia. The worries change over time, depending on the issues we are dealing with at that moment. I used to obsess over them, to the point where I was missing out on enjoying the Lia I have today because I couldn’t stop worrying about Lia in the future. The reality is we don’t know what Lia’s life will be like in the future, not even the doctors truly know. I often have to tell myself to stop looking at her diagnoses for a minute, and just see Lia. The happy child who doesn’t have a care in the world. Always reminding myself that yes, there will be challenges ahead. That we will be face them head on when they arise, just like we have always done before.

Every single day since she’s been born, I’ve learned something new, gained new skills…and so has Lia. We are stronger with each passing day, and will face whatever the future brings together. Once I had that mindset, I was finally able to truly enjoy our beautiful and amazing life with Lia. The biggest worries will always be there in the back of my mind, but I try very hard not to entertain them on a daily basis.

Every single day since she’s been born, I’ve learned something new, gained new skills…and so has Lia. We are stronger with each passing day, and will face whatever the future brings together.

My wish for Lia is that she always knows how much she is loved. That she has an army of friends and family behind her who will always be there to support her every step of the way. That she never gives up on her dreams, whatever they may be, and never lets anything stand in her way.

 

Natalie: Siblings of children with additional needs are phenomenal in accepting differences, what have been some if your favourite moments or examples of this?

Kelly: Lia has an amazing big brother and sister. Roman is almost 9 and Ava is 10. When Lia was a baby, I used to worry about how her special needs would affect their lives. Would they miss out on things because of Lia’s complex needs, would they feel like we didn’t have enough time for them and their needs. I couldn’t have been more wrong in my thinking. Yes, having a sibling with disabilities is not always easy, but what it gives my children far outweighs what it takes away.

They have learned from a young age about acceptance, inclusion, perseverance and hard work. They have more compassion and empathy than most adults I know. They really are kind and beautiful little people, and Lia is so lucky to have them as her siblings.

Ava is Lia’s best therapist by far. She has spent hours on end watching therapy sessions in our living room, and it has totally rubbed off on her. She sets up activities, makes her use “righty” throughout the day, and is always thinking outside the box to find new ways to help Lia. Roman is Lia’s greatest source of laughter. Anything that kid does, Lia thinks is hilarious. Her face lights up anytime she sees either one of them. It really is such an awesome bond they all have.

The Miracle Project

 

Natalie: I’m passionate about the special needs and self care connection. Raising a child with a medical condition or diagnosis can bring some big challenges, how did you cope? Are there any self care practices that helped you on your journey?

Kelly: I’ll be honest. This is the one area I still struggle with the most. I’ve poured my heart, soul, and mind into Lia and the rest of our family these past three years. I’ve heard it more times than I can count that I need to take more time for myself. Well, it’s really hard when you are just starting out on a journey with a child with special needs. There just aren’t enough hours in the day. I feel like for me, I just needed that time to heal and get to the place I am at today. I am finally at a point where I feel able and ready to focus on myself again.

Now that Lia is in school every morning, I have made it my mission that this is the year of self-care! I have an amazing best friend. Talking with her is my best source of therapy. She just makes me laugh every single day. I love to read and try to sneak a good book in here or there that isn’t found in the medical section of the library. I am also an ex-gym addict, so hoping to pick up that habit again. Exercise makes me feel wonderful, and I’m so glad I will have the time to fit it in my schedule again.

 

Natalie: What advice would you give a mum who is beginning her journey after receiving her child’s diagnosis?

Kelly: It’s been said before by many others, but you really need to find other special needs parents to connect with. Whether it be in person or through social media. Reach out to them, ask questions, read their stories. Get to know them and their children. Their child doesn’t even need to have the same diagnosis as yours, you may still have a great connection. They will become your lifeline, and greatest source of information and support. From what brand shoes fit best over braces, to supplements that help with various issues, and the best therapeutic toys… you name it, someone in your special needs village will have the answer for you.

They will not only be a wonderful support system for you but will also be there to encourage and praise your child along the way. We all know what it feels like to celebrate “inchstones”, to be scared to death waiting for test results, and to breathe a huge sigh of relief when a hard day, week, month or even year is over. Having a child with special needs is hard. Navigating the system is hard. The emotions involved are beyond hard sometimes, and no one truly understands what that feels like besides another special needs parent. Find your village, let them help you find your way. Before you know it, you will be doing the same for someone else who is just starting out on their journey.

 

Natalie: What are some lessons and blessings you have learnt since becoming Lia’s mum?

Kelly: Since becoming Lia’s mom, I have learned so much, more than I can even put into words. Mostly it has just made me a better person overall. I truly see the people that were once not so visible to me. I want to get to know them. I find myself to be more caring, helpful, and patient than I ever was before. I now know what matters most in life and strive to live each day with that mindset.

The day Lia was born was simultaneously the worst and best day of my life. It’s the day that I started on my own journey of becoming the person I was always meant to be. I am beyond blessed to be her mother.

The Miracle Project

 

Natalie: Do you have a favorite quote, prayer, or piece of miracle inspiration that you would like to leave us with?

Kelly: This quote was sent to me on the morning of Lia’s heart surgery by a good friend and fellow special needs Mama, and it has always stuck with me since that day.

The most beautiful people we have known are those who have known defeat, known suffering, known struggle, known loss, and have found their way out of the depths. These persons have an appreciation, a sensitivity, and an understanding of life that fills them with compassion, gentleness, and a deep loving concern. Beautiful people do not just happen.

– Elisabeth Kubler-Ross

The Miracle Project - Kelly Family

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If you would like to share your miracle moments and special needs journey,

please get in touch here. 

#themiracleproject “Uniting our stories across the globe”.

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2017-10-22T23:49:09+00:00

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