Tag Archives: special needs journey

Letter to the NICU Parent Who Feels Out Of Place

When people talk about the NICU journey it is usually in reference to children who were born prematurely, but what many don’t know, is that there are many children who were born full-term (or pretty close to it) who end up in NICU due to congenital anomalies or other health issues.  We fall in to the second category.  I recently saw that a local non-profit requested letters to NICU parents from those who have been there that could be handed out as a welcome to families and to ease fears.  I knew I wanted to contribute because it seems like families in NICU for anything other than prematurity often get left out and feel like they don’t belong.  If I could hand a letter to parents in the NICU, this is what I would say to them. For those who also share this experience, what would you add? 

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For parents of children in NICU who were born full term with congenital anomalies.

Dear NICU Parent,

First and foremost, Congratulations on the birth of your beautiful baby boy or girl!  Secondly, I’m sure this has already been quite the rollercoaster and is not at all what you were expecting.  Take a deep breath and know that YOU ARE NOT ALONE.  I have sat exactly where you are and felt many of the same emotions.  Our journey may be different, but we have many, many shared experiences.  I hope this letter helps to ease your worry and helps guide you down the first few steps of this new path.

Brax in NICU My son, Braxton, was born full term and we had absolutely no idea we would need to be worried about him once he was born.  Honestly, it was several hours before we knew anything at all.  To our knowledge, we had a perfectly healthy 8-pound baby boy.  Then, the neonatologist came in and our perfect little world came crumbling down.  She told us that our son’s blood sugar was very low because he would not take anything by breast or bottle.  She continued on to say that there were some features that pointed to some kind of syndrome.  His eyes were wide set, his nasal bridge was flat, his head was very small, his ring and pinky finger on both hands were fused together, and his toes were crossed.  She also thought she heard a significant heart murmur.  But, she could not definitively say he had a particular syndrome, only that he needed to be transported to another hospital to undergo testing.  12-hours after birth, my son was taken away to another hospital, without me.  I was devastated.  I’m sure you are too.

I remember sitting in the NICU thinking, my child does not belong here.  As I heard the nurse tell a mom that her son gained a few ounces and is now a whopping 4 pounds, my heart fell. Here I am with a giant 8-pound baby while the baby across from him is only half his size. I don’t belong here. I said this over and over.  I know now this period was critical in keeping my child alive and I am forever grateful to the experience in hindsight, but in that moment, I dreaded everything about it.

My son spent 3-weeks in that NICU and had a g-tube placed and many tests done to determine the genetic cause of his abnormalities.  The testing in NICU had no results.  We learned of some conditions that affected his eyes, heart and brain, but we had no cause and no prognosis.  After discharge, we began the marathon of therapies and specialists to help my son develop and to give us answers about what was causing his condition.  Braxton was 21-months old before we had an official diagnosis.  Now, he is almost 3 and doing extremely well.  Much better than the neonatologist who first saw him ever expected.  He is almost walking, he is finally eating by mouth and rarely uses his g-tube (we were told he’d need it for life), and he has taught us so much.  We were deathly scared and angered and saddened and every emotion that you could think of in the beginning.  We now know a joy like no other. Make no mistake, this journey is hard, but you can do it and it’s so worth it.

Here are some things I learned along the way and some I wish I had learned early on:

1.  It’s okay to grieve.  In fact, you really need to grieve.  Grief is a natural part of the healing process.  Your entire pregnancy, you were planning for this precious little girl to play dress up and create amazing art with, or a daring little boy who was going to be the next football star or karate champion.  Now, here you are in the NICU and the doctor says they don’t think your child is going to make it, and if they do they will never do anything meaningful with their life.  (We’ll get back to that in a minute.) Your whole world is crushed.  Believe it or not, you just lost a child.  Yes, the child you birthed is here and living, but the child you dreamed of has passed.  The realization that you may not get to do all the things you planned, hits you like a bus.  It’s okay for you to be sad about that, angry even.  Mourn the loss so that you can move on to caring for the child you have in front of you.  You will build new dreams.  You will find ways to make the dreams you had come true.  There are accommodations for everything.  I know of so many children with special needs who play sports, dance, do karate, swim, and so many other amazing things.  The dreams you have for your child can still come true, it just takes a little more work and you might need to make some adjustments, but it can happen.

2. No one has a crystal ball. There is not a single person on this planet that can tell you with complete certainty what is going to happen with your child.  Our doctors do the best they can with the information they have, but they cannot predict the future.  If the doctor says your child may not survive and if they do they won’t have a meaningful life, first, shame on them for saying such a thing, but second, the world is FULL of people who doctors said wouldn’t live for very long and I can tell you that every one of them has a meaningful life.  If you have a diagnosis, understand that all diagnoses have a spectrum and every child with that diagnosis is different.  The research can give you an idea of what to expect, but it is not absolute.  Just look at children with Down Syndrome.  There are children who have severe challenges, but there are also a lot of children who have only a few complications.  Many of them grow up to hold full-time jobs and live on their own.  And I’m sure all of them at some point were told “your child may never crawl/walk/talk/live on their own/hold a job/etc.”   You never know what could happen. Never, never, never lose hope.  

3. You know your child best. Yes, your doctors went to school and have many years of experience, but your child is your child and no one knows your child the way you do.  No book and no amount of experience could let anyone be the expert you are when it comes to your child.  You are the one with him/her day in and day out.  Always trust your gut and don’t be afraid to stand up to a doctor.  Believe it or not, sometimes they are wrong.  You are the advocate for your child and you will have to fight for everything they need.  Just because a doctor says “well children with X,Y,Z Syndrome typically don’t have severe GI issues, so it’s probably just reflux,” does not mean you stop there if your child is projectile vomiting their entire feed, every single feed.  There are lots of tests that can be done to investigate the issue further and just because THEY have never seen a child with X,Y,Z syndrome have the issues your child has, does not mean that it is not possible.  When in doubt, always know you have the right to a second opinion.

4. People mean well, but they almost always say the wrong thing. For us, we hated when anyone told us “Well, things could be a lot worse.” Braxton’s dad would usually quip back, “Yea, well things could be a lot better, too!” Other things like, “You know, God only gives special babies to special parents” or “God would never give you anything more than you could handle” or “he looks normal to me!” And then somewhere along the way you get promoted to sainthood with comments like “Oh, I just don’t know how you do it!” or “God sure knew what he was doing when he gave you that child.” Or “I would just die if that happened to my child, you are so strong.” Um, thanks? I’m not stronger than the person next to me, I’m just a parent and that’s what parents do.  We rise to the occasion, because who else is going to do it?? We are strong because we have no choice but to be strong. I get what people mean most of the time, but it still stings a little.  And, if you are like me, after a certain point you just want to hit the next person who says something out of place.  You learn to ‘grin and bear it’ or use the opportunities to educate the person who says the wrong thing.  Just know that even the most ridiculous things often come from some place with genuine sympathy. Also know, that sometimes people are just downright mean, and those people don’t deserve your time.  If you are quick-witted you may be able to educate them and put them in their place quickly, but most of the time you are so stunned at the sheer audacity they had to say such a thing that you just stare blankly.  If that happens, just move on, they don’t matter in the grand scheme of things.

5. You WILL learn everything you need to know.  I remember getting ready to discharge from NICU and a nurse going over operating the g-tube pump one more time and thinking how in the world am I going to remember all of these steps.  Just before discharge the nurse went through all of the paperwork with me and discussed the specialists I needed to call for follow-up appointments.  We were discharged with what seemed like, a mountain of medical supplies and a long list of people to call.   I was overwhelmed. I didn’t know where to start.  I became more organized than ever.  I made charts, spreadsheets, journals, and kept detailed records.  I created a medical records binder to store everything I needed for Braxton.  As I realized that everyone wanted to know exactly what happened from the time he was born, what doctors he saw, exact dates, exact procedures, I began to maintain a timeline.  This was very helpful in filling out the mounds of new patient paperwork.  Eventually, I created a single page document with a list of diagnoses, medications, procedures, diagnostic imaging and surgeries.  I have a spreadsheet that lists all of our doctors, their specialty, the reason they are treating Braxton, and phone/fax numbers for every one of them.  These two documents have been the single most important for us, and our doctors really appreciate the “Cliff’s Notes,” so to speak, on Braxton.  It is scary and overwhelming, but just take a deep breath and know that YOU. CAN. DO. THIS!

Here is a helpful guide from Mommies of Miracles you can share with friends and family who ask how they can help you. mommiesofmiracles.com

Here is a helpful guide from Mommies of Miracles you can share with friends and family who ask how they can help you.
mommiesofmiracles.com

6. Don’t be afraid to ask for help or accept help when it is offered! This is a hard road and you simply cannot be on “go” 24 hours a day, 7 days a week.  Caregiver Burnout is very real and can affect you and your family. You need to take care of YOU so that you can take care of your child.  Don’t be afraid to ask someone to sit with your child so you can take a shower, take a nap, or step outside in the fresh air for a few moments.  If someone offers to help, let them! Give people specific tasks that help you check off your to-do list and satisfies their need to help you.  Ask someone to cook dinner for you, bring dinner to you, put gas in your car, bring you gift cards for the grocery store, or simply ask them to sit with you and learn about your child.  People care about you and they want to help, don’t shut them out.

7. Take care of YOU! This should probably be number one! It’s okay to take a step back and take a deep breath.  There are going to be many times along this journey that it is all simply too much to handle.  Understand that this is natural and you have every right to take a break.  Go get a massage, a manicure and pedicure, go out for dinner, just do whatever will help to recharge you so that you can be your best for your child.

8. Your relationship with your spouse or significant other will be tested. It’s a well-known fact that men and women process these experiences very differently.  I wanted to talk about all of the possibilities, talk until things made sense, or simply talk for the sake of filling the silence.  Braxton’s dad was not a talker.  He’d listen to me for a little bit, but he’d almost always zone out or change the subject.  He dealt with this in his own way. He buried himself in work and in music. BUT, he was at every single doctor’s appointment. He learned how to use Braxton’s feeding tube.  He woke up in the middle of the night to change out the formula, change Braxton’s diaper, or simply rock him back to sleep.  We became so tired that we lost time for ourselves. We stopped talking to each other.  We argued about so many insignificant things that seemed important in the moment, but I cannot recall one life altering argument that impacts us today.  Don’t let that happen to you.  Make time for each other.  Get a sitter, respite nurse, or close family member to stay with your child so you can spend time together as a couple.  Have a date night and don’t feel guilty about it.  If all else fails, don’t be afraid to go to counseling and find each other again.  Do everything you can to remain a team, but just know that sometimes things don’t work out and that’s okay.

9. You will find your faith, or you might lose it.  I have seen both sides of this coin.  People who learn to see God in their lives through the miracle that is their child, and people who become so angry with God, that they begin to think that He is not present in their lives because of all the hurt and struggle they have faced.  We struggled with our faith and were very much tested spiritually, but eventually we did find our way back and began to see things much differently.   You will find your own path.

10. Understand that support is critical.  We become so wrapped up in caring for our children that we often forget about our own needs.  For so long, I thought I was doing just fine.  I didn’t seek out support groups because I didn’t think I needed any.  One day, I went to a meeting with a local non-profit for children with undiagnosed and rare disorders.  I was hesitant at first and almost cancelled, but reluctantly, I went.  That night changed my life and I didn’t even realize it until much later.  U.R. Our Hope was exactly what I didn’t know I needed.  I was able to talk to other parents who shared my experiences and truly understood my journey.  We talked about doctors and how they could have the audacity to make us wait in their office for 2 hours for a 10-minute visit! I learned about resources available to me that no one had ever mentioned before.  I became empowered.  I listened to other parents tell their stories of challenging the system and advocating for their children and was in awe of the people who were before me.  I found myself seeking out more virtual support resources as well.  We live in such a digital age and I am so grateful.  Virtual support groups can be just as helpful and fulfilling as face-to-face support.  Just knowing that someone out there “gets it” makes all the difference in the world.  Don’t be afraid to look for groups in your area and just jump right in with both feet.  You won’t regret it.

A Worried Mother11. Step away from the computer! There is only so much research you can do before you drive yourself crazy.  As you learn about new symptoms, new treatments, new possible diagnoses, definitely seek out information, but don’t waste all of your time on the Internet or in the library trying to memorize everything.  You will burn yourself out and miss out on precious moments with your baby.  You will also start to worry about things that might never happen.  Some research is outdated and does not paint a nice picture.  When we finally received our official diagnosis, I did some research and I did not like what I read.  By this time, I had started blogging about our journey and when I shared our results and my research, someone reached out to me and said, “Hey, my son has this same syndrome and I know many other people as well.” I immediately reached out and asked to connect with everyone.  I found a Facebook group and began to make connections.  I learned that some of the children were playing sports and doing some truly incredible things.  Many of the children were nothing like the research I had read.  Hope was restored. When you do research add “Parent support for” in front of the diagnosis and that will help you find the support groups or blogs or just real life people who will gladly share their story with you.

12. Don’t isolate yourself or put limitations on you and your child.  Unknowingly, we sometimes hold our children back because of our own fears.  We did not go out to eat for quite some time because we were scared of what people would say if we had to feed our son with his tube in the middle of the restaurant.  Only one of us would go to the grocery store or run errands because we didn’t want to interfere with a feeding time.  We turned down friends invitations for dinner and parties. We kept our older daughter from doing things because of her brother.  I quickly realized this was making her resent him instead of wanting to build a bond with him, so I had to find ways to give her the things she wanted so she could still have her ‘normal.’ You and your child deserve to do anything you would normally do if he/she did not have special needs.  Tube feeding in a crowded restaurant is totally acceptable. At the park? At a birthday party? At Church? Absolutely! Always try to place your child in the least restrictive environment.  Don’t feel like you can ONLY go to special needs parks or attend special needs activities.  Try the regular park, try a regular dance class or baseball team.  Sometimes all it takes is a few simple adjustments and your child is dancing and playing right next to his or her peers as they should be.

Choose Joy Everyday13. Always choose joy.  Joy is a choice.  It is a conscious choice that you have to make each and every day.  When you are going through a rough time, take the time to grieve, but pick yourself up and choose joy.  This whole experience is only as good as you make it out to be.  YOU control the mood and outcome.  The things you choose to focus on are the things that begin to consume your life.  You can choose to focus on the bad things that are happening, have happened or will happen, or you can choose to focus on the positive things that are all around you.  Take some time every day to think about the good things that happened and the things you are grateful for in your life.  Slowly, a positive attitude will come easy and choosing joy will become second nature.  And then something even more amazing will happen; the joy will pour out of you and into the lives of others! I know that right now, this seems ridiculous, but trust me, you will get here.  The fear and the sadness and the anger will subside.  Sometimes those feelings will come back, but every time you will be better prepared and you will notice you spend less time with those feelings and more time with joy and happiness.

Congratulations again on the birth of your beautiful child!  I know things are scary right now, but eventually everything will be okay.  Don’t be afraid to reach out to someone who has been in your shoes.  We remember what it’s like and we want you to stand beside us, so we will gladly reach out our hand to you and pull you up.  We will walk this path with you and help you find your footing.  From this point forward, you are never, ever alone.

All the best,

A-once-scared-NICU-mom-who-didn’t-feel-like-she-belonged-on-this-journey-either

 

//edit: After writing this letter, I realized that I left off one VERY important piece of advice for parents of children with congenital anomalies. It’s not your fault! Read more in my post “Letting Go of the Guilt.”

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Simply click to vote! It's THAT easy. Then feel free to browse some other really great mommy blogs. Thank you!

Simply click to vote! It’s THAT easy. Then feel free to browse some other really great mommy blogs. Thank you!

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The 2-year Hurdle

Yikes! I inadvertently went on a blogging hiatus. Sorryyy! While things have been relatively ‘boring’ medically, I have managed to keep us all VERY busy! We have been taking advantage of things slowing down medically by actually enjoying our weekends and doing things that seem almost…’normal.’ Hmmm…imagine that!?

Movie time!

Movie time!

Earlier this month, big sister, Aileen, was invited to TWO birthday parties in one weekend!  That same weekend, I also took the kids to a Sensory Friendly Showing of “Cloudy With a Chance of Meatballs 2” at our local AMC theater.  This is the 2nd movie we’ve done with AMC and both times have been really great! I love that the lights are low but not completely dark and the sound is much lower than normal.  Even with his hearing aids, Braxton did really well and did not startle during the movie.  He also did really well at the birthday parties with his sister.  It was so nice to be able to let her have fun with her friends instead of having to stay home because brother was sick or needed to be on continuous feeds.

Shortly after, I started a new job and have been juggling my old job as well until the end of the month.  AND since I don’t have enough to do, I had also been working with U.R. Our Hope preparing for our inaugural fundraiser gala.  We planned a very nice dinner and silent auction with friends and supporters of the rare and undiagnosed community.  I think it all went very well, and it was so wonderful to see such incredible support.  As part of that weekend, U.R. Our Hope also hosted a conference on Patient Advocacy and we had the amazing opportunity to film with a documentary crew for an upcoming feature on the Undiagnosed.  I was asked to speak on a parent panel at the advocacy conference and also share our diagnostic journey with the film crew for the documentary.

It was in sharing our story and looking back on this past month of the most ‘normal’ we’ve ever had, that I realized we’ve reached this “two year hurdle.”  In talking to other families who have children with special needs, I’ve found that many say the first 2 years were the hardest and that somewhere around age 2 things seemed to calm down.  I really feel like that has been the case for us.

The first year was by far the most tumultuous.  We went through so much from not knowing how long Braxton would be with us, not knowing what the future held, not knowing the exact cause of all the issues, surgeries, countless doctors appointments, so many therapy sessions, and our relationship was tested in ways that should have broken us apart.  We spent so long just going through the motions, fumbling our way through our routine and this ‘new normal’ and I don’t even see how we did it.  Somehow through that journey I found people to walk with us and build us up to find the strength and the courage to stand up for our son, for our relationship, and ultimately fight to find answers.  The only way to explain it is that God was with us every step of the way testing us to the brink of all that we could handle and every single time he was there to catch us as we were falling and bring us back to where He wanted us to be.  We came out stronger than we ever could have imagined.

Around 15 months, something clicked for Braxton and he really started to take off.  It really hasn’t been ‘smooth sailing’ since then, but we have certainly seen easier days.  We have gotten most of Braxton’s medical issues under control and have learned all that we need to really be able to care for him.  I remember when handling the G-tube was the scariest thing I could fathom and now it is so much a part of him that I forget to mention it when giving a ‘medical history.’

Along the way I also learned how to focus on the positive aspects of our life instead of the negative.  Finding life’s blessings even in the darkest of times saved me from severe depression.  There have been times when I didn’t understand why this all happened or why my son had to suffer, times where I thought I just could not handle one more thing and then bam everything seemed to crash down.  But every time, I’d look down at my little boy and see his smiling face and I was reminded of everything I have to be thankful for.  I met families who were going through so much more than us and families who were having to say goodbye to their child way too soon and I realized that despite our struggles, we were blessed to still have our little man with us.  No matter how difficult things were, he was with us and needed us. Braxton has made us better parents and better people in general.

In every interview I’ve had to do, I’m always asked “What advice would you give to parents in your situation or who are at the beginning of the journey?” I always be sure to say that I want other parents to know that they are not alone.  This journey can be so lonely and so frightening at times that we feel like no one else on this Earth could ever understand what we are going through, but I’m here to tell you that there IS someone who understands! What I’ve learned is that despite the diagnosis, the special needs journey is similar for all who go down that road.  We all share many of the same experiences and have so much to offer each other in the way of support.  Let your guard down. Let someone come in and share their story with you. You would be surprised to learn just how similar their journey is to yours. We all share so many of the same emotions, fears, hopes, dreams, and we all want the very best for our children.  If you are just starting this journey, try to reach out to someone or allow someone to reach out to you and walk BESIDE you along this path.  Having someone to walk with you or simply be there when things get hard makes all the difference in the world.

After looking back on our journey as I’ve shared it over the past month I’ve found another important piece of advice; it gets better.  The first year is definitely tough, I’m not going to lie about that.  There is so much to learn and so many specialists to see to get all the answers you need to care for your child.  There will be sickness, uncertainty, unexpected hospital stays, financial strains, and a roller coaster of emotions, but eventually it all slows down and things get better.  We are down to yearly appointments with some of our specialists and still every 6 months with a couple.  We had 3-5 appointments every month for the first year.   This month we had 1.  Your journey may be different from ours and perhaps your child is more medically fragile, but at some point you learn to manage everything and come to a place where things aren’t so hectic.

Braxton walkingI know we aren’t in the clear and there is always the chance that something will happen to set off the cycle again, but for now I’m enjoying what has been the most ‘typical’ month we’ve had in 28 months.  I’m so thankful that I’ve found a support community both virtually and in person.  That outside support has been my saving grace at times.  We are finally making it over this 2-year hurdle and Braxton continues to amaze us.  He is doing so well with walking!  His balance is getting better and his pace is getting faster.  I just know that one day soon he is going to let go of my hand and walk away.

28 months ago if someone would have said “hey it will get better, he’s going to be walking and doing just fine,” I probably would have slapped them across the face because in my grieving that was the last thing I wanted to hear.  So if you are reading this and at the beginning of the journey, (I hope that you don’t slap the person that tells you this in person) since you and I are a safe distance apart, I’m going to go ahead and say it….IT GETS BETTER! Hang in there, this journey is rough but the rewards are great.  You will find the strength and the courage to carry on.  Find a support group either virtual or face-to-face to connect with someone who has walked this path before and can walk WITH you.  And just when you think you can’t take ONE more thing on your plate, know that slowly your plate will become more manageable and you might even find some space for dessert!

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Sharing Braxton’s Story

A few weeks ago, we visited KXAN here in Austin, but our interview was preempted by coverage of the French Open so we recorded the segment and it was to air on the 17th.  Well, then there was a little mishap and our segment got erased.  Instead of just moving forward, the producer called me personally to apologize and so graciously invited us to come back and try again.

So, this past Wednesday, we visited KXAN studios again, this time to do our interview live. We are so grateful to our friends at KXAN Austin News for allowing us  to share our update on Braxton’s diagnosis and to talk a little about U.R. Our Hope, the organization who has been walking with us every step of the way along this journey. Dr. Parker, the medical liaison for U.R. Our Hope and our Physical Therapist (they mixed up her title on the video) joined us in our interview.  

Here is the link to the full story on KXAN: Parents triumph in toddler’s diagnosis

And here is the video!

 

 

Being able to share our story has been so incredible because of the awareness that has been raised.  There are so many people who don’t know that a child CAN in fact go without an actual diagnosis for so many years, that a child may NEED a feeding tube to survive and thrive, and they may have never even heard of Rubinstein-Taybi Syndrome. Heck, there are some physicians who have never heard of it! So, with every person that reads our blog, visits our Facebook page, sees our news story, there is something so much more happening. Every view is one more person who can say “Hey, I’ve heard of that” or “Oh, I saw this child on the news with a similar situation.” when they or someone they know finds themselves in a situation like this.  We had no idea until it was all thrust upon us, and now we want to be able to share our experience so that we may help others.

This journey can be incredibly rewarding, but it is without a doubt difficult at times.  We want to make sure others know that they aren’t alone. You don’t HAVE to walk this path by yourself. Find a support group. Reach out to a parent who’s “been there.” Trust me, it makes all the difference in the world when someone can reach back and say, “Hey, I’ve been there too and I know exactly how you feel.”

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