The most difficult thing I’ve ever heard is that my newborn baby was born with extraordinary needs I wasn’t expecting and a diagnosis that shook me to my core. You may be feeling this right now, too. I hope you will let me be there for you and help you navigate a path you did not choose.

Let me share my road from brokenness to beauty that may help you get through the hardest time of your life.

After my daughter, Jade, was born, I was devastated by the diagnosis we were given. It was difficult to fathom the magnitude of what the doctors had told me, much less imagine how I was going to get through it. Postpartum hormones and depression certainly didn’t help an already unimaginable situation.

To top it off, I’m a nurse. Not just a nurse. When Jade was born I was also an International Board Certified Lactation Consultant. I was the person the nurses called when they had a particularly difficult breastfeeding case. Helping new babies and moms learn to breastfeed and taking care of sick babies is nothing new for me. I could get any baby to breastfeed.

Just not my own.

But it was different when I was the one holding my own broken baby in my arms, hearing diagnoses and prognoses that were like a knife to my heart. It felt overwhelming just to keep my composure, let alone find words to ask questions. My whole world spun out of control, and I relied on the trusted pediatricians who I worked with every day to chart our course and get us the immediate help we needed.

Yet, it’s possible to go on, to care for your child, and to find the best pediatrician as you care for your baby who was born with an unexpected medical need or chronic disability.

It isn’t easy, but you aren’t alone. Building a community of friends and family to support you is one of the most important things during this time. Smart and compassionate medical professionals are just as vital.

But medical professionals who work with children with extraordinary medical or special needs may sometimes seem to lack the compassion that you need, especially as you learn to care for your child.

They’re in the business of “figuring out” what’s “wrong” with your baby. To find a diagnosis that can often feel clinical and removed. While well-intended, it’s heartbreaking to have a team of physicians study your baby like he or she is an anomaly, especially at a time when you feel completely overwhelmed and hopeless.

Like me, you see everything beautiful about the baby God has given you. Having others pick apart every nuance of his or her appearance or behavior can wreck a parent.

In those times, it can be easy to think the world around you sees your child as nothing more than a diagnosis.

That isn’t true.

Your baby is a beautiful new life. But some days you may have to search every square inch of your life to find the miracle that kept your child alive that day.

Maybe this is where I come in. To offer you a safe place to come. To give you advice for the journey ahead of you. To hold out an experienced hand and pull you from the darkness when it feels like too much.

I would be lying if I said it was going to be easy. Because it’s not.

As someone from the trenches of the pediatric and postpartum floors who has worked alongside hundreds of new mothers and newborns alike, I know there are many pediatricians who share your same love and compassion.

Finding them takes time, and it takes the right questions. Unfortunately, handbooks on “The Right Questions to Ask a Pediatrician for Your Special Needs Child” can be a little hard to come by.

Don’t worry, because I’ve been where you are. As someone who’s been on both sides of the situation, I can help guide you through what you should be asking your pediatrician to make sure they’re doing everything they can to help your precious little one.

The road ahead of you is going to be hard, but you will be transformed into a Warrior Mama or Daddy. You will become like those who have gone before you. Those of us who have become Beauty Under Pressure.

I named my daughter Jade after a beautiful gemstone. For no other reason except that I knew she would be beautiful. And she is.

The gemstone Jade is a beautiful green stone that is formed through a metamorphic process. Intense heat, massive pressure, and tectonic plate movement far below the ocean surface causes crusty ocean basalt rock to be transformed into something beautiful. Jade is Beauty Under Pressure. And you will be, too. Just like me. Just like the other Warrior Mamas and Daddies you will join.

My daughter’s diagnosis set off a transformational process in me as well. One that made me question everything I thought I knew about myself, my faith, my family, and my daughter’s life. I was overwhelmed. Depressed. Hopeless. Faithless.

But I was transformed under the extreme, almost unbearable, heat of her diagnosis and doctor’s visits, hospitalizations and sleepless nights of g-tube feedings.

And then I was further transformed by the massive pressure of the responsibility I had to care for a baby with extraordinary medical needs.

And when the tectonic plates shifted and the grounding plates of my life moved when I least expected it, I didn’t think I would make it through.

I’ve been in those cold rooms with my own daughter. I’ve been beaten down by dismissive words, pessimistic predictions, and stoic indifference.

But, on this unchosen journey, I’ve found a Warrior Mama strength that has become unshakable. I had no choice. It’s what my daughter needed.

I was transformed into someone new, someone who not only saw the beauty of the gemstone I had been holding in my arms the whole time but someone who wouldn’t allow anyone else to steal that beauty.

Though the last thing you expected was to raise a baby with extraordinary or special needs, never forget that there is so much beauty in the road you will travel. Beauty like Jade. A beauty that can only be formed under intense heat, massive pressure, and tectonic plate movement.

Never lose sight of the beauty that’s being formed in you and your child.

Never lose sight of the hope you have, and don’t let any diagnosis steal that hope from you.

The road ahead of you isn’t easy, but you and your child can and will travel it together.

Advice from A Warrior Mama

I have two pieces of advice before you start researching.

1. Find Your Tribe

When I first found out about Jade’s diagnosis, it was hard not to feel like it was me against the world. Even though I had seven other children and a husband who helped as much as he could.

But I still felt alone, and I isolated myself more and more because of the grief and anger I was experiencing.

However, the love and support of my family and friends was always there. When I accepted their prayers and support, it helped me feel not “so alone.”

I’d encourage you to find that same support.

Having a family member or close friend sit down with you while you conduct your research should be an essential part of that plan. If you know someone who works in the medical field, that would be a plus to help you sort through the mountains of information you’re going to find.

The lines between fact and emotion can be blurred incredibly easily, especially when you’re looking at the future of your child.

Bringing someone you can trust into the conversation allows you to find strength in your loved ones instead of walking the road alone.

I know that facing this news can make you feel helpless as a parent. After all, it’s your child’s life. It can feel like an impossible burden that you have to bear.

If you’re running on fumes and about to crack under the pressure, you won’t be much help to your child. So relinquish bits of time to helpers. Take a nap. Go to church. Leave the house for even an hour.

You owe it to yourself, your child, and your family to take care of yourself. Let your tribe step in so you can do just that.

2. Dr. Google Isn’t Always Right

We live in a digital age, and information is easier than ever to access.

However, that information can often be frightening.

Your first instinct upon learning your child’s diagnosis may be to feverishly type your child’s condition into Dr. Google to start getting answers.

However, as many stressed-out-of-their-minds parents will attest, Google does not help to ease your anxiety.

Before you know it, you’ll be pouring over WebMD, countless forums, articles, Wikipedia, and whatever else you can possibly dig up on the internet. You’ll be exhausted, confused, and scared.

While these resources can be helpful in the right hands, in the hands of a worried parent, they can be devastating. Cold, clinical articles that detail nothing but what seems like a life of misery can rock your world even more than you thought possible.

They don’t understand your daily life, nor do they understand the road that will take you from brokenness to beauty.

But maybe worst of all, they’ll distract you from all the beauty that lies ahead of you.

To balance that information and keep your eyes set on the hope in front of you, avoid getting lost in the details.

You could read every article on the internet about your child’s condition and still never find a single one that understands the nuance and depth of your child’s situation. That’s because every child is different and their unique beauty can never be accurately portrayed in a journal article.

Because of that, take each article for what it can offer you. If it doesn’t give you insight into care for your child or a new question to bring to your pediatrician, set it aside. Talk to your tribe. Pray. Take it to your trusted pediatrician.

Taking the time to research more about your child’s condition can help provide a necessary foundation that will prepare you for your appointment with your pediatrician or specialists. But it can also take you down a rabbit hole where you end up feeling like you’ve created your own dungeon to live in.

Proceed cautiously.

Surround yourself with your tribe.

And remember, you’re never alone.

Know What You Want to Ask Your Pediatrician

You and your tribe have taken the time to research your child’s condition, and you’ve whittled your list down to the most essential questions.

Questions involving care and treatments, therapies and possible surgeries have probably all made the list.

But don’t forget questions about how you can add to your child’s life.

What support groups or respite resources are available?
Where can your child find friends?
Who are the best physical or occupational therapists? Will you have to drive to them or will they come to your home?
Does your state have Federal “Part C” programs for birth to three years old? Or does it have Medicaid Waiver programs for children with disabilities?
Does the pediatrician’s office have a social worker to help you navigate the programs your city, county, and state offer?
Are there school districts that would be worth considering relocating to, as they have better resources to support your child?
And as hard as it is to ask, what does this diagnosis mean in terms of life expectancy or the ability to become independent one day?

While you probably have a million questions running through your mind, you won’t realistically have all the time in the world to get the answers you want.

Writing out your questions and selecting the best ones to ask your pediatrician is imperative.

There are a lot of medical nuances that can bog down these consultations. Trust them with the minute details, and try to keep your eyes on the big picture ahead of you.

That’s absolutely easier said than done, so once again, bringing in someone from your tribe to help you identify the best questions to ask can also be helpful.

Walk them through your research (if you haven’t conducted it together), and show them all the questions you want to ask and why you want to ask them.

You will know you have found your trusted pediatrician when he or she spends every last minute you need to answer these important questions that will ultimately help you help your child.

Advocating for Your Child

Advocating for your child means trusting your instincts.

The bond between you and your child is a bond no one else shares except for the two of you, and it’s a bond that’s not always easy to put into words.

Before my daughter Jade was born, I felt the fear and anxiety about her life that many other parent’s share. But I also knew that something wasn’t quite right.

Doctors and friends alike dismissed my concerns as nothing more than an anxiousness about her life, and so it hurt all the more when it turned out my fears were true.

It can be hard to push past people dismissing you, but it’s vital that you use your voice to advocate for your child.

Remember: you know your child best. A good pediatrician will agree with this statement.

If you know that something is wrong with your child, whether it is their behavior or anything else, it’s time to put on your Warrior Mama or Daddy hat and get to work advocating.

Oftentimes the pediatrician may say there’s nothing to worry about, but he or she doesn’t spend every waking moment with your child like you do.

You’ll know best what is and isn’t normal for your child, so trust your instincts.

This is especially true if your child is nonverbal or otherwise unable to communicate with you. But you will quickly learn their cues that tell you something is off, when they are sick or in pain, or when they just need a nap. Nobody will know your child like you. You are the expert.

When advocating for your child, remember that you’ll need to explain why your child’s behavior isn’t normal.

While your instincts can be powerful guiding forces, it’s hard to translate instinctively knowing something is wrong into words.

Explain to your pediatrician your child’s normal behavior and how they’ve been acting differently.

Giving them clear examples of how they’ve acted in the past and how they’re acting now will not only give them a better idea as to what’s going on, but it’ll also help your child get the help they need.

Mama and Daddy Warriors May Have To Flex Their Muscles Sometimes

You will be in many positions where you need to fight as hard as you can for your child. You want them to get exactly what they need, and you’re willing to do whatever it takes to get them care.

A good pediatrician who has cared for many children with special needs will understand this. If yours doesn’t, then it’s time to move on to one who does.

You will likely have a close relationship with your child’s pediatrician. Specialists like neurologists, gastroenterologists, cardiologists, or geneticists tend to have massive caseloads, so the chance that they know your child well is pretty slim. In fact, you will probably see more nurse practitioners and physician assistants who specialize than you ever will an actual MD.

But the time may come when you have to recruit your child’s pediatrician or other healthcare professional to step in and be your professional mouthpiece with specialists if you feel that you are being dismissed.

And if your child ever experiences what you know is an emergency, a call to 911, a ride to the closest Children’s Hospital or pediatric specialty hospital, and a visit to the emergency room may be the only thing that gets you in front of an MD specialist. This sounds frightening, but it’s the cold, hard truth. And it’s the backdoor I have, unfortunately, had to use with my own daughter and some of my pediatric patients over the years.

One time, years ago, I had a home healthcare patient who was having more than twenty seizures a day for more than a week. His mother called me in tears, begging me to help because she was being dismissed (like you may also be at times). “Neurology says we can’t be seen for at least six months,” she cried to me. “Oh no. That is not happening,” I replied. And I promptly got on the phone with the neurologist office, gave the triage nurse my name and title, and explained the situation. When she also dismissed me, giving the same excuse that there was a six-month waiting list, I requested her name so we could be sure to let the family’s attorney know in case there was an adverse event because of their backlog of appointments. By the end of the call, my patient was scheduled to be seen in clinic an hour later with the physician neurologist. Not an NP. Not a PA.

I didn’t raise the tone of my voice.
I didn’t make threats.
I simply explained the logical consequence of ignoring this child’s medical needs.
And it worked.

Don’t be afraid to flex your muscles if anyone glosses over your worries.

As we discussed earlier, you know your child better than anyone else. Come prepared with the facts, but be firm in the delivery.

If you have to remind the doctor that your child is not just a diagnosis but a person, it’s time to find a new pediatrician or specialist.

Be Organized

Being as confident as you can is good when going into a doctor’s office. However, it won’t mean much if you aren’t organized.

Medical records are now accessible by almost all medical offices that work with a primary pediatric hospital. Electronic Medical Records (EMR’s) streamline the care of the patients and allows for better communication among the team (which could be twenty or more professionals).

Keeping a daily journal of your child’s daily activities, poops and pees, feedings, tolerance of therapies, temperature if sick, sleep patterns, and any other pertinent documentation (like seizures), will be a helpful history to take along to appointments.

Having a written record to show them how long your child has been feeling poorly and how their condition has changed will be much better than giving them a vague estimate of time.

Finally, come into the office with your questions prepared.

Knowing what you want to ask will not only get you the answers you need but also give you and your doctor an opportunity to explore specialty referrals for your child together.

Having everything organized before you head to the office will give you a much better path forward for getting your child the help they need.

The research we talked about earlier will help with this, as well as bringing someone from your tribe to keep you on track.

A million questions and fears buzzing around in your head can easily throw you off a helpful conversation, so try to keep things simple and concise when speaking with your child’s pediatrician.

How To Find and Choose Your Child’s Pediatrician

There is a very good chance you won’t have exclusive decision-making when it comes to choosing a pediatrician. This is because of the nature of commercial insurance and which ones each pediatric office contracts with. It becomes even harder if your child has Medicaid as a primary insurance, which is very unfortunate.

Your child may have seen a certain pediatrician that you absolutely loved in the hospital when he or she was born. Then you find out that the office isn’t accepting new patients or doesn’t take your insurance. This can be frustrating.

Before you give up, first call the pediatric office and explain your situation. Sometimes they are willing to make exceptions.

Then get on Facebook and research the Disability Support Groups in your area. The one in my area is called “Noco Mamas of Kids with Special Needs.” Yours will be similar in name. Then start asking questions about pediatricians in your area. Not only will these Warrior Mamas and Daddies surround you with support, referrals, and answers, but you will likely expand your tribe exponentially!

Questions To Ask Your Prospective Special Needs Pediatrician

Every child will have different questions that need to be asked depending on their case. Your child is unique, and the care they’ll need should be tailored to fit them and their needs.

However, coming up with the right questions can still involve a lot of confusing work. Despite all of your research, you might come out the other side unsure of what to ask.

Below, I’ll cover questions to ask your pediatrician as well as the context in which you should be asking them.

I’ll also go over how to come up with your own questions so you’ll be able to get any specific answers you’re looking for.

There’s a fair number of questions down there, so pick and choose which ones you feel like you should know, and remember to take notes based on the answers you get back.

You and your child’s future pediatrician are forming a partnership. You need to be able to trust him or her, and in many ways, they need to be able to trust you.

An open line of communication between the two of you is the best way to achieve that, and these questions will be how you establish that trust.

Questions for a Prospective Pediatrician

How long have you cared for children with disabilities?
Have you ever taken care of a child with my child’s diagnosis?
How do I reach a physician after hours?
How far in advance should I be scheduling appointments for my child?
What’s the best way to reach you (email, phone, etc.)? If I leave you a message or send an email, how long should I expect to hear back? Who can I contact if I’m unable to contact you?
What hospitals do you work with? If my child needs to go to the hospital, where should I take them?

Questions for a Specialist

Are there any particular procedures that my child will need to go through?
How long is the waiting list to see a physician specialist?
What developments in my child’s condition should I be looking for?
How do I contact you after hours?
Will you make referrals to out of state specialists who have solid reputations dealing with the same issues my child has?

How to Come Up With Your Own Questions for Your Pediatrician

The questions above can be a great starting point when meeting a new pediatrician, but they won’t give you all the answers you need.

Everyone’s situation is different so you’ll have to come up with questions on your own based on your child’s specific needs.

Remember: your child is unique.

Their condition and how it affects them will require questions that can get very specific.

Assess your child’s needs so you can come up with questions on your own

What will make them more comfortable, happier, and able to live a better life?

Take a look at your current living situation and begin thinking about what you may need to ensure your child has the care they need wh≥÷.’en they need it.

Questions regarding specific situations you’ve found yourself in can be a helpful guiding point as well.

For example, when my Jade was an infant, her tone was so poor that she couldn’t breastfeed or take a bottle with my milk in it. Her condition was so grave that she needed a gastrostomy tube surgically placed in her abdomen (also called a g-tube, a mini button, a mic-key button, or a peg tube). My medical background gave me a lot of knowledge about this process but without that experience there are so many questions to ask.

What is the surgery like?
How can we support her recovery?
How do we make her comfortable while feeding her?

Remember to prioritize your child’s health and safety so that they thrive. But also remember, it may take some months to develop a routine that works for your child.

Questions unique to you aren’t just reserved for complicated procedures. Maybe it’s even something as simple as how to encourage your child when they’re struggling with their limitations.

Your pediatrician can help answer those more unique questions, as well as questions about the diagnosis of your child.

The more specific, the better.

Finally, asking yourself some questions after you’ve talked to the pediatrician can be illuminating as well.

Did you feel comfortable around the pediatrician?
Does your child feel comfortable around the pediatrician?
Were they able to answer your questions in a way that genuinely helped you understand how to navigate your child’s care?
Do you share their same philosophies on medicine?
Do you feel as though you have a clear plan of action for your child?
How easy was it to contact and schedule a consultation with the pediatrician?
Did the office seem organized and the staff friendly?
Is their office easy to access and close to work or home?

Asking yourself a few questions at the end of your consultation can help you get a better understanding of whether or not this is the right pediatrician for your child.

Remember, your child’s pediatrician is your frontline contact when you need medical help.

They’re there to care for your child. They should be someone that you can trust and someone that you can rely on to give your child the proper help that they need.

As someone who’s come from this field, trust me when I say that most medical professionals are well-meaning and compassionate. How could they not be? After all, they have chosen to work with beautiful children like yours. But if your Mama or Daddy radar feels off, then it may be time to start looking for a team that will both support and enhance your child’s life.

Find those medical professionals and partner with them to care for your child as best as you can.

You’ve Got This

When I had Jade, I was scared, angry, and lost.

I wasn’t sure how to handle any of the news the doctors were giving me. It felt like my entire world was caving in on me.

Just like the gemstone Jade is formed under intense heat, massive pressure, and tectonic plate movement, Jade and I were also transformed into something beautiful.

I wouldn’t change a hair on her head. Not for a road more traveled. Not for a life free of diagnoses. Not for one. Single. Thing.

It has been hard to get us where we are, but we have become.

We are Beauty Under Pressure.

While the road was long and stressful, it was absolutely worth it for the joy that came out of it, and the strength Jade and I now have.

That beauty is being formed in you, too.

I know how scary it all feels right now. You’re probably feeling hurt, anxious, and angry. Angry at the world, angry at the doctors, and angry at yourself.

This journey you’re on will have tears and heartbreak for sure, but it will also have joy, laughter, and a fierce love that can’t be put into words.

Each day will present new challenges, but finding the right pediatrician can be one of the best ways to ensure your child is being cared for.

They’ll be able to walk you through the nuances of your child’s care and understand what should be done every step of the way.

Your child’s condition is unique, and it can often be confusing, but don’t get lost in it.

I understand trying to find out everything you can to get your child the most amount of help that you can give them, but remember to trust your tribe.

After you’ve found a good pediatrician who you trust, let them work alongside you to help your child as much as they can.

Never give up hope.

Fight for your child.

Stand up for them when they can’t stand up for themselves.

Be ready to be flexible. Be ready to make adjustments in the plans you had previously made for your life. Be ready to compromise on some dreams.

Because even though your life has changed… even though you are walking on a road you did not choose, you are “becoming” Beauty Under Pressure. And one day you will join the tribe of a fledgling Warrior Mama or Daddy who needs exactly what you have to give.

Thank you for allowing me to be here for you, part of your tribe, to help you find your road from brokenness to beauty.