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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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Filed under Family, Kids and Family, Life, Special Needs Child

Feeding Tube Awareness Week 2014!

FTA Week 2014This week is Feeding Tube Awareness Week!! I have not been as diligent this year in writing as I was last year, but that doesn’t mean that FTA Week is not important, because it is! We proudly celebrate our tubie love.  Since I did not keep up with the daily topics, I’m going to do one post to catch up for the week. This will help me keep my answers short and sweet (ha, right!?)

Let’s do this.

Day 1: Share your Feeding Tube Awareness Week video and story.  

We did not make our own video this year, but we were a part of the video created by The Oley Foundation which celebrates people of all ages with feeding tubes! The theme for this year’s FTA Week is “Nothing Can Hold Us Back” which is clearly evident in this video.  Enjoy!

Most of you know our story, but if you are new, the short version is that Braxton aspirated at birth so it was not safe for him to breast or bottle feed.  Aspirating means that you are swallowing fluid in to your lungs instead of your stomach.  Braxton also had very poor coordination and low muscle tone in his face so he simply could not eat enough to sustain his weight.  At 2 weeks old, Braxton had surgery to have his G-Tube placed.  He quickly began to thrive and finally was sent home from the NICU the next week.  We have worked very diligently with our Speech Therapist on feeding and we are just now, at 2 and a half years old, seeing real success.  Braxton is eating pretty much all of his food by mouth now and we are only using his tube to give him water to keep him hydrated and supplementing his feeds just to make sure he is getting the calories he needs to maintain his weight and gain appropriately.  For more information you can read our post from Day 1 of FTA Week 2013 or get the full scoop on the Day Braxton Became a Super Tubie.

Day 2: Share your tips for feeding on the go or in public!

The best tip is: your kid HAS to eat no matter where you are so don’t be afraid to pull out your tube and feed your child! We were so scared in the beginning about what people might think of us or Braxton when they saw us using the feeding tube.  Would they think he was chronically ill or contagious? Would they think we were bad parents? That we MUST have done something for our child to be this way? It took a while for us to be comfortable with public tube feeding, but now it is really no big deal.

We have fed in restaurants, in doctors offices, while on a road trip in the car, at the park, anywhere! We always made sure we had the supplies we needed and we kept a few extra in the car, just in case! We were given a backpack from our medical supply company when Braxton first had his tube and required a pump.  It was easy for us to set up the feed and just go about our business.  We could go to the mall or the zoo and his backpack would hang on the stroller as the pump ran.

In the beginning, Braxton’s feedings were about an hour long and eventually decreased to about 20 minutes.  If we were going to be out long enough for two feedings, we kept the 2nd feed cool in a lunchbox or lunchbag with an ice pack.  We bought a portable bottle warmer for the car so that we could heat his food up on-the-go.  Many times, we would arrive at a restaurant and ask them to bring us a cup half-full of hot water and we simply placed the bottle in the cup to heat up.

Always plan ahead.  Think about where you are going and what you will need. An extra syringe? An icepack? An extra feeding bag? A change of clothes just in case the food doesn’t stay down? Make a checklist if needed, but eventually, you learn exactly what you need!

Day 3: Show how tube feeders can do what they love to do.

This was another thing I was worried about when we first got our feeding tube.  I wasn’t sure exactly how this might affect Braxton’s development.  I remember asking the doctor if he would be able to learn to crawl or have ‘tummy time’ since his tube was right in his abdomen.  The doctor assured us that it would not be a problem, and it surely wasn’t! Braxton didn’t crawl until he was about 15 months old, but once he figured that out there was no stopping him! Braxton quickly began crawling lightning fast.  One minute he was in the living room and the next he was in the kitchen pulling tupperware out of the cabinets.   We also worried about bathing and swimming.  I asked if we needed to cover his tube every time he bathed or avoid the swimming pool.  Again, the doctors assured us that he would be just fine.  So far, Braxton has not been limited in any way because of his tube.  He is thriving!
Here are some pictures of Braxton just being a regular kid!

Day 4: Share how you and your family cope with the challenges of life with a feeding tube. What has made the journey easier?

Support! We became involved with a local support group and met other families whose children are also tube fed.  Seeing and truly understanding that we weren’t alone was a big help to us.  Connecting with virtual support was also helpful.  Groups like the Feeding Tube Awareness Foundation really helped us understand that we were not the only family with a child who needed a feeding tube.  We have really learned to love and appreciate the tube for a number of reasons.  When Braxton would get sick often, we didn’t have to worry about him dehydrating or not eating because we could simply feed him with his tube and adjust the speed as needed.  Using the tube for medicine has also been helpful, because making a child take medicine by mouth is no simple task! As we learned more and met others the ‘stigma’ went away.  Now, Braxton’s tube is as much a part of him as any of his limbs! At the end of the day, the tube kept Braxton alive and we are forever grateful for that.

Day 5: What are your tube feeding hopes and dreams for you or your child in 2014?

Yummy in my tummy!

Yummy in my tummy!

Well, of course, we hope this is the year we have a tubie graduate! Yes, we are thankful for his tube and we have learned to appreciate it, we would love for Braxton not to depend on it so much.  He has recently made some really amazing progress eating by mouth and we are so excited! The next step is getting Braxton to drink by mouth.  We are working on straw drinking from a cup and so far Braxton is doing well.  He has drank up to an ounce of water in therapy taking small sips from a honey bear type sippy cup.  I tried some apple juice and Braxton was not a fan! We will need to work on flavors and temperatures before we can get graduate from the tube.  I’m very happy with the success Braxton has made and cannot wait to see what he accomplishes this year!

 

Day 6: Share the tubie love! Share pictures of you or your child living life to the fullest. Today is about living and loving life.

This one is easy.  Just glance through any of our photos on our Facebook page and you will see that nothing holds this kid back! Braxton is so full of life and love and happiness.  His joy simply pours out of him and into the lives of others.

Day 7: Share your favorite Feeding Tube Awareness Week post, photo or video.

I think I just did! I was not able to keep up with the daily topics this year, but I think this “catch up” post is perfect for FTA Week.  This captures all of the incredible things Braxton has been able to accomplish because of his tube and shares our story.  Thank you to all of the people who shared our photos throughout the week and our posts from last year.  We are looking forward to an awesome year!

FTA Week 2014

 

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Love Deeply. Live Joyfully. Take Nothing For Granted.

Flu. Pneumonia. RSV. Respiratory Complications. Surgery Complications. Cancer. Hospitalizations. Death.

Sometimes this Special Needs journey is hard.  Really. Hard.

I’ve sat by and watched several friends suffer through all of these in the past few months and am reminded again that nothing in life is guaranteed.  Your whole world can be flipped upside down in an instant.  The day you learn your child has special needs.  The day you have finally adjusted to your new ‘normal’ and suddenly the unexpected comes and knocks you down.  The journey is all about adapting and adjusting. One day everything is going just fine and all of a sudden, BAM! It’s like you’re stuck in a whirlwind and can’t even catch a moment to see straight.

I see my friends fight through these obstacles and remember that the same fight is knocking at my own door at any given moment.  Braxton is doing incredibly well and making huge progress in all areas.  I am so very grateful for that and I’m enjoying every moment. But I know that at any time it could all be taken away.

I have been very diligent in keeping Braxton away from germs and sick people because I know the toll it would take on him.  I avoid taking him out in public when we don’t need to be out.  I’ve even avoided Church because I just can’t bear the thought of him getting sick.  This flu season has been exceptionally harsh on everyone and especially on those with special needs.  Braxton has always had respiratory issues and I’m genuinely scared that if he catches the flu we will end up in the hospital.  While I’m scared, others are living it and I just wish I could do something to help.

A member of our RTS family is battling brain cancer right now at only 13 years old.  He is being a true warrior and handling the radiation and chemo treatments well.  Watching him and his mother go through this brings to light the reality of the syndrome we are dealing with.  Not all children with RTS fight cancer, but it’s a very real possibility.  I’m so thankful to his mom for having the courage to share their journey and being able to read their updates just in case I ever have to walk that same path.

A friend I met through the non-profit I am a part of, suffered the unimaginable loss of her sweet son at only 4 years old. He was still partially undiagnosed.  They had suspicions as to what the underlying diagnosis was, but no conclusive answers. No treatments.  He had been doing so well and I was excited to see him making progress.  And suddenly….he’s gone. I’ve seen loss on the special needs journey, but never this close to home.  I have been devastated, and I know that what I feel is minuscule to what she feels with part of her heart missing.

Just because Braxton doesn’t “look sick” or “look disabled” doesn’t mean we don’t have anything to worry about.  Our RTS friend went to the doctor because he was sleeping more than usual and just didn’t seem to be acting like himself and it turned out he had a mass in his brain which had to be operated on immediately.  My friends sweet son passed sometime in his sleep with no warning, no sickness, no hospitalization.  He was just at home being his sweet self.  You never know when things like this will happen.

The fear and the uncertainty are always there.  We have learned to quiet those fears by consciously choosing joy and positivity.  We focus on the good things that are happening in our life and I try not to bring light to the worries that I have, but sometimes those worries are just too big to ignore.  My heart goes out to all of my friends who are watching your children suffer with illness, cancer, or anything else that is keeping them down.  This is a hard road we walk, but I hope you know that you aren’t alone.

I see you. I see what you are doing for your children and how you are fighting with everything in you to keep them healthy and safe.  I’m praying for you and cheering with you when everything turns out okay.  I’m crying with you when things set you back and treatments don’t work.  I’m mourning with you when the unthinkable happens.

The tears are falling down like rain.

I know that I need to choose joy, but for now the tears are falling.  The tears are an absolutely necessary part of this journey.  You have to allow yourself to grieve, to mourn, to weep.  And then you pick yourself up and carry on.  Somehow, you always find the strength and courage to get back up and smile again.

With sickness and loss, we are reminded of the fragility of life.  Nothing in this life is guaranteed, so don’t be afraid to love and live.  If I allowed the fear of all the bad things that might happen consume me, we’d never do anything.  I certainly wouldn’t know the joy that is held in my son’s smile.  His smile exudes so much joy and his light suppresses all of the worry and all of the fear.

Let this be a reminder to love deeply, live joyfully and take NOTHING for granted.

 

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Thankful for Team Braxton

Braxta Bear“It takes a village to raise a child” has completely taken on new meaning since Braxton came along.  From day one, we had a small army of people caring for him and working to keep him alive.  Two years later, we don’t have as many people on the “front line” so to speak, but they all stand ready when we need them.

Although there hasn’t really been one standout doctor for us, we are appreciative of them all.  I have heard some real horror stories about families dealing with some not-so-great doctors, and I thank my lucky stars we have only had one really bad experience.  While we have dealt with doctors offices not returning calls promptly, for the most part, they have all been extremely helpful.  I’m thankful our doctors have been proactive in caring for Braxton.  There were times that a test may not have been necessary just yet, but our doctor ordered it anyway.  For example, after receiving our diagnosis of Rubinstein-Taybi syndrome, we knew many kids were at risk for a tethered spinal cord (a condition where the tissue in the spinal column is abnormal which can affect gross motor skills and many other things).  I called our orthopedic doctor to relay this information and ask if it might be worth it to go ahead and get an MRI of the entire spine.  Although we didn’t have a lot of clinical evidence, our doctor wrote the order and Braxton had all 3 MRIs done.  Luckily, the MRIs came back unremarkable only noting very mild scoliosis.  Our pediatrician has also been very helpful and has pretty much ordered everything I brought to her attention or submitted referrals “just in case.”  We are thankful to all of the doctors on our team who have helped us along this journey.

Braxton in PTNow our therapists, are another story.  Each and every one of them is exemplary.  They have all at some point or another, gone above and beyond all expectations.  They love Braxton so much and it’s obvious that he loves them too.  Braxton has had Physical therapy and Speech therapy pretty much since the day we brought him home from the hospital.  He started Occupational therapy some time after, and is doing so well with her too.  We often talk about how far Braxton has come and all that he has accomplished under their direction is truly a miracle.  I love when our PT is visibly excited because Braxton stood without assistance for all of 2 seconds.  He really “gets it” and his excitement is truly genuine.  He is so kind and so gentle, but will totally roughhouse with Braxton when Brax is feeling feisty.  There is an unspeakable bond there and it’s beautiful.

Our PT supervisor has also been phenomenal.  She has taught me so much and is such a wonderful PT Supadvocate for Braxton and children just like him.  She sees so much potential in him that she made it a point to personally make some calls and make sure Braxton had a space at his current daycare.  We were worried at first, but we see exactly why she recommended this move and are so thankful.  She’s really been a guiding light throughout this journey and I thank God every day for bringing her in to our life.

IMG_0398Our Speech therapist has been so patient and determined when it comes to feeding Braxton.  Despite the huge setback and trying to overcome this oral aversion, I see just how hard she is working to help us and love that she is always excited when we see any progress.  She is now working with Braxton on using an iPad communication app to promote choice making, and Braxton is doing so awesome with it.  She is always keeping me updated on his progress and even calls just to check on him when she knows he’s been sick.  I so value her expertise and understanding.

Our Occupational therapist has been really great with helping Braxton really hone in on his fine motor skills.  His progress here is much slower than in other areas, but it’s progress and she’s always so proud of him.  Our daycare teacher made the comment that she loves that our OT doesn’t talk AT Braxton, she talks WITH him.  Braxton isn’t able to respond, but she talks to him as if he is going to talk back to her.  She, like all of our therapists, assume competence.  They don’t discount Braxton because of what he “might” not do, they all operate on the thought that he CAN and WILL do it, it just may take a little longer than normal.

We also receive hearing and vision therapy through our local school district.  They have both been awesome! It’s obvious that they care about Braxton and his progress and continually have “outside the box” ideas on how to promote his skills.  Braxton has especially taken to our hearing teacher as she is so kind hearted and fun to be around.  She has been helping us all learn sign language so that we can communicate with our sweet boy.

We are SO incredibly thankful for this simply amazing team of therapists.

We are thankful to the fans, supporters, encouragers, readers, kind hearted strangers…just everyone who has taken the time to read a blog post (or all of them!), visit the facebook page, like a post, share our story, share in our joy when Braxton reaches a milestone, say a prayer, or simply offer words of encouragement.  This outpouring of love really gets me through the hard days when I’m feeling lonely or isolated.  I can just look at our blog or at our facebook page and see so much love and so many people who do really understand and are hoping for the best.  This virtual support system is so needed and I’m thankful to have all of you on this journey with us.

We are also thankful to our physical support team; our family and friends.  We have had the pleasure of meeting some really great people on this journey who are walking their own path in this special needs world and their support and advice is much appreciated.  We all rally with each other and offer support and encouragement on this bumpy road.  Our family of course has been very supportive and help us whenever we need them.  Having all of these people to lean on during the hard times or cheer with us through the good times has been incredible.

We are so thankful for everyone in our life who has in some way or another contributed in the care of Braxton.  Our little village has helped this kid move mountains.  We didn’t know what to expect, but it’s obvious that a little bit of love and encouragement can go a long way.

Can’t think of anything more to say, other than: Thank you, Team Braxton. Just, thank you.

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Wordless Wednesday: Sweet Laughter

I know the idea behind Wordless Wednesday is to show a picture that “speaks for itself,” but this video of Braxton totally counts too, right?

Braxton is pretty much always wordless, but you can always count on him to make you smile without having to say a single word…

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Filed under Family, Kids and Family, Special Needs Child