For the NICU Mom

To the NICU mom. I see you. I get it.  5 years ago I was in your shoes.

The day of your child's birth.  It's suppose to be a magical day but instead turns into a nightmare.  One minute you're holding your baby in your arms and the next minute they are wheeling him to the NICU. Some of you don't even get the chance to hold your baby before he is carried off in an incubator.  Instead of holding, feeding and loving your child your days are reduced to short visits by his bedside.  Nobody visits you and you don't want any visitors.  Nurses basically leave you alone and when they come to your room they have a sadness in their eyes and speak to you in hushed tones.  Your eyes are perpetually red from crying. There is a dark cloud hanging over you.  You can't eat. You can't sleep.  You go through the daily motions of life but you are numb.

You walk in to the nicu.  You would expect that a room full of babies would be loud. You'd expect to hear baby cries, coos, hear the babies moving around. But there is none of that.  All you hear is the soft sounds of machines.  Hear the occasional beeps of a monitor.  It's completely silent.

As you look at your baby, you see him covered in wires.  He lies completely still and looks like an alien.  You wonder what happened.  Was it something you ate. Something you did or didn't do.  Your husband is there too.  When you look at him you feel his sadness but he is trying to be strong.  Men aren't suppose to show emotions but you see how much this is tearing him up inside.  He's doing his best to comfort you.  But you can't be comforted.

The nurses are respectful.  They explain everything that they are doing. They give you updates. But it's not the same. YOU are suppose to be feeding your baby, changing his diaper, rocking him to sleep. Instead a stranger is watching him. They know his needs.  They are his caregiver.  You feel like a failure and a bad mom.

As you spend your days there, you watch other babies come and go.  You see the happy parents as they put their baby in the car seat to leave. They look at you with pity and sorrow.  Then they turn around and walk out of the room with their baby. They are going home.  You are not.  You feel a lot of envy. Then guilt because really do wish them well.

You worry so much about bonding with your baby.  You hear the experts say how important it is to bond.  How can you bond with a baby that is covered in tubes and wires?   How can you bond with a baby that has to live in the hospital while you live at home?  How can you bond with a baby who is always asleep every time you visit?  How can you bond with a baby when they won't even let you hold him?

You have other children who need you so you leave your baby in the hands of strangers and head home to your other children.  You put on a brave face and try to act like everything is normal.  You go through the routine of cooking, eating, homework, hanging out at home all the while knowing someone is missing.  Your body is at home but your heart is at the hospital.  You don't show your other children your tears because it will scare them.  You put them to bed at might and allow yourself time to grieve.  You're grieving for the baby who does not have a diagnosis. You're grieving for the happy time that families have in the hospital after a baby's birth.  But you have no good memories.  No first pictures.  No happy visitors to your home.  No chance to dress your baby in the cute little clothes that still sit at home.  The baby needs no clothes only a diaper.  By the time your baby comes home he will have outgrown those cute clothes.

Every time the phone rings you jump. You race to see if it is the nicu calling.  You really begin to hate that place.  You know you need to be there but you really hate to go.  You wonder why you even bother because all you do is sit by your baby's bed while he sleeps. How is he going to know if you are there or not?  But you go.  You make yourself go because some small part of you hopes that he hears your voice and feels your touch.  You pray that he knows you're his mom and that he know you love him. Most of all you hope he knows how sorry you are that he has to stay there.

You wait for a diagnosis. The doctors tell you the tests they have done.  Everything comes back normal. You are relieved but your patience is wearing thin. Why can't they figure out what's wrong?  With all of his technology why is it taking so long?  Then the day arrives. As you visit your baby all of the doctors and nurses gather around.  Their faces are somber.  Nobody is smiling.  Your heart clinches in fear.  The doctor says what you have been waiting for but dreading to hear.  You have a diagnosis.  You hear the diagnosis and your heart breaks into a million pieces. You crumble and your husband reaches out to support you.  You cling together as the doctor keeps talking.  But you don't really hear him at first. There's this roaring in your ears. You feel like you are outside of your body.  Then you start to calm down and focus on what they are saying.  You hear the words "home" and "he's going to be fine" and you begin to feel a little hopeful.   You begin to realize that the other doctors were wrong. Your son will not live in an institution. He will come home.  It will take a long time and you will have to have a lot of machines to keep him alive but he tells you the magic words "YOU" will care for him at "HOME".  The diagnosis is terrifying.  You're so very sad that this will be your child's life from now on but there is a great relief in knowing what's wrong.  Now you have a plan.  Now you can work towards getting him home. There's a light at the end of the tunnel.

I am here to tell you that you can do it.  You're stronger than you think.  Life will never be "normal" but you find your own new "normal".  You will come out of this a stronger more compassionate person. You've been changed forever.  Not many people have been through what you have.

As you sit at home and hold your baby you realize how precious life is. You see how much of a fighter your baby is and he becomes your hero.  He's so strong and you know that he can handle whatever life throws at him because he's been through the darkness.  Occasionally you will be brought back to those dark days. You will smell hand sanitizer and be reminded of the hospital.  You will see a mom somewhere in public holding her newborn baby and have some regrets that it wasn't the same for you.  Your baby didn't get to wear the cute clothes.  Your baby didn't get to have a first photo.  Your baby didn't make a sound for a very long time.  But you realize that none of that matters now.  All that matters is that your baby is home where he belongs.  You have finally bonded and your bond is unbreakable.  You and your baby have come through hell and your love is fierce for one another. Now the little baby begins to grow and only wants you. Nobody else will do.  You never tire of the baby clinging to you.  You never complain about the sweet little boy who has grown up to make lots of noise. You embrace every hug, every kiss, every I love you. You even embrace the messes, the noise, the times you have to send him to the corner. You secretly love it when he's disobedient because that means he's alive and living his "normal" life.   You embrace all of it because you know how precious it is.  You enjoy every little moment.

Hang in there NICU mom.  One day you will look back on this experience as a bad dream.  There is hope. You're not alone. You will get through this.  

A Year in Review--The Fourth Year

Noah enjoying his birthday cake

Noah at Chuck E. Cheese

Today is Noah's 5th birthday.  I cannot believe that another year has passed so quickly. It seems like just yesterday we were learning about CCHS and ventilation and now we are moving onto kindergarten and investigating other ventilation options as he grows up.   This past year was a really good year.  He has really done a lot of growing up this year. Noah is very bright and constantly asking about everything he sees and hears.  He loves to tell everyone what he knows about his surroundings including all of the colors and numbers.  The best part from a medical standpoint is that he had no real medical issues this past year and has been very healthy and stable. 

We began the year by attending speech therapy at the elementary school twice a week.  He made such good progress that we were able to drop a therapy and only attend once a week.  His vent clinics went very well.  Noah's annual bronchoscopy was uneventful, which was a tremendous blessing given all of the turmoil that we had after the previous one.  No granulomas were found and there were no other issues.  His annual sleep study went well.   Everything was in the proper range and no ventilator settings were required.  He also had his holtor monitor (heart monitor)  and  neuroblastoma screening, which were both normal. 

This year was the year of travel.  With both his sisters playing travel volleyball, we were on the road most every weekend during the season.  We went to Tennessee, Georgia and several places here in Alabama for tournaments.  Noah became the unofficial assistant coach of the team and loved having 12 girls and their coach making him a part of the team.   During the summer, we spent a lot of time at Gulf Shores because his oldest sister played sand volleyball.  We had so much fun spending time at the beach.  Noah loved playing in the sand and the water.  We purchased a pop up canopy that was large enough to cover all of our beach chairs. We filled a large cooler with water, snacks and drinks and spent the days on the beach. Fortunately, the summer was fairly mild and it never got too hot during the tournaments.  As an extra precaution, I took a squirt bottle filled with water to squirt around the trach in case he got sand there but with the flextend trach, I really didn't need it.  I just put him in a swim shirt and tucked the trach under the shirt.  It worked very well.  I had to be very cautious with the heat and make sure he didn't get too hot.  He got very tired of me telling him to take a drink every so often, he just wanted to play in the sand. 

Noah had a really great time this summer at Vacation Bible School.  He really began interacting with the other children and actually participated in the activities.  He was very reserved last year so it was very encouraging to see him branching out socially.  It's so funny watching him.  He is very decisive and will tell them if he doesn't want to do something.  His personality is adorable.  He made several new friends at VBS and invited them to his birthday party. 

Another fun thing Noah did was to ride on Thomas the Train.  He loves trains and every year Thomas comes to visit our local train station.  They have a lot of fun activities related to trains.  He was very excited to be able to see Thomas. 

Noah was also able to spend the night with his Nana and Poppa.  They have kept him a couple of times this past year and have done fantastic with the vent and trach care.  It was a huge step for them and for us.  It has been fantastic for him to do the things that "normal" kids do and spend the night with his grandparents.  He loves staying there.  The spoil him terribly and he loves every minute of it.  Every time we go over there he asks when he is going to get to spend the night with them again. 

We recently had his birthday party at Chuck E. Cheese.  He invited several of his friends and a lot of family.  We spent the day playing games, eating pizza and cake and visiting with friends and family.  The noise level was little overwhelming for him at first but he quickly recovered and had a great time. 

 

Noah has also began 4K this year.  Currently, he attends twice a week from 9-1 at a local church based private kindergarten.  Because it is a private school, they do not have a nurse so I attend with him.  I stay in a room upstairs in case I am needed for a medical issue.  His starting school has not bothered me as much as I thought it would.  I guess its because I don't actually leave him.  I am on the premises.  Next year will be a whole different story.  He will be attending every day all day. The teachers and staff there have been fantastic and do a great job of watching him and making sure that he is ok.  They brought him to me once to check his trach because he had some nystatin powder around his neck.  We use the powder every night when we clean the trach.  They noticed some clumped up around the stoma and wasn't sure if it was a concern or not.  Now our other big decision is whether to leave him at his current preschool (which he loves) or put him in the public schools 5K program.  When we move him to public school, we will have to go through all of the negotiations with the school on nursing and Noah's care and what will have to be provided as a result of his condition.  I would prefer to leave him where he is now but if he went public, they would be required to have him a nurse and I could actually leave the school, which would be nice. I think that it will be a fight to get what we need with the public school.  I'm not looking forward to that part of it. 

Watching him grow and change has been such a blessing.  It is amazing to see how far he has come. 5 years ago I saw him being wheeled out of my room in an incubator going to the NICU.  I observed him with tubes and wires poking out of his body.  He never made a sound.  Now I see him talking constantly, playing in the sand, swimming in the pool, aggravating his sisters and I marvel at how strong he is, how much of a fighter he can be.  He is an amazing mighty little man and I am so blessed to be his mother.  They told me he would be in an institution the rest of his life.  He continues to show them just how wrong they were.   

Noah after his trach surgery

Noah's first birthday

Noah's first birthday



Coach Noah and the volleyball team

Noah and Thomas the Train

   

 

 

 

Happy 5th Birthday my Mighty Noah.  Mommy (and Daddy) are so proud of you. 

Do You Really Need a Nurse?

I belong to several trach/vent support groups on Facebook.  One of the most talked about issues is nursing care.  Some of these women have hit my last nerve.  So here goes.

Noah has never had nursing. Our insurance doesn't cover it and there no way we could afford to pay for nurses out of pocket so nursing has never really been an option for us.  That being said,  I know that some people need nurses.  Maybe their child is extremely vent dependent., maybe they work outside the home, maybe they are a single parent.  For whatever reason, nursing is necessary for them.  I get that.  But what I don't get is these moms who don't seem to know how to care for their child.  The moms who won't step foot outside their house during the winter, ones who are scared of using candles or perfume or having pets, ones who do not take their trached children to the beach or the pool.   I understand it's necessary to be careful but these kids need to experience LIFE.  They need the sand on their toes and the sun on their face.  They need to go to parks, zoos, movies, restaurants and experience all that life has to give.   I will be the first to admit how hard it is when you have to carry a ventilator, pulse ox, go bag and your baby.  It took me several trips to the car just to get stuff loaded.  It's a hassle for sure but one that is worth it.  I feel so sad for these kids who are stuck at home and don't get to do anything.

I've heard all the reasons for having nurses.

"It's safer to have someone watch your little one 24/7".
"Having a nurse at home is a must"
"You are a mom". (Not a nurse)
"There are no second chances for mistakes"
"You need sleep"

Yes I am a mom but I am also a chef, chauffeur, teacher, laundress, secretary, and nurse.  Every mom is these things. Special needs mommies just have more of the mommy nurse role.   No, there are no second chances but there's no second chances for anyone.  Yes, I do need sleep but so do all the mommies of newborns and daddies who work night shifts.  No, having a nurse at home is not a must.  We have done just fine for the last 5 years without one.  As for 24/7 watch, how would you like if someone sat beside you every day all day watching your every move.  There's no privacy.

I really do get that 24/7 nursing is important for some people.  I'm afraid, though. that these moms are becoming too dependent on other people to care for their child.  They don't know how to do trach care, they don't bathe their own children,  they rely on these nurses to handle all of the medical issues (trach care, suctioning, trach changes, vent alarms, etc.)  This is dangerous!  A few months ago a little boy died because his nurse did not know his trach was out!!!   These parents lost their child because a NURSE was not properly trained.  Just because someone has a nurse's license doesn't mean they know how to care for our child.  Not to mention, all of the schedulelng conflicts, nurses sleeping on the job, messing up the house and the lack of privacy.

If you have nursing and love them then I'm glad.  All I'm saying is that you need to be sure, completely 100% sure, that you can take care of your child's medical needs yourself.   Don't be afraid to do this. It's your child and nobody knows that child better than you.  Don't be afraid to ask questions. Build up a list if resources you can contact if you're not sure of something.  Don't listen to the people who say it can't be done.  It can.  It's just takes a lot of effort, planning and learning.  I just don't want trach/vent moms to be scared of their own kids.  They are just kids, they just need a little extra help. Do not be afraid to rely on yourself. Trust your instincts. Please, whatever you do,
don't condemn those of us who don't have nurses.  Our children are not in any more danger than yours.

I am so blessed that our hospital trained me so well.  It took several months but by the time I left the hospital with Noah, I knew how to care for him completely.  No, I am not a licensed nurse but I do know the nursing skills needed to care for my own child.   Our pulmonary team made sure we had the right training and the confidence to handle things ourselves and for that I will be forever grateful.

When Our Best Isn't Good Enough

The CCHS community has suffered yet another loss.  A little girl named Sloane lost her battle with CCHS.  Her parents did all the right things, took great care of her but yet it still wasn't enough. 

We take such careful care of Noah.  We go to all of his checkups, get all of his vaccinations, do all of the yearly tests, read as much as we can on his disorder and do everything we can to make his life as normal as possible.  But there is always that fear.   The fear that our best isn't good enough.  Noah has a mild mutation of 20/25, which means he doesn't have as many problems as some of the higher mutations.  But that doesn't matter to me.  The risk is still there. 

My greatest fear is that Noah will have a heart pause.  We have lost several CCHS kids to heart issues.  Noah has yearly holtor monitors to test for this.  However, as his doctor has told us, CCHS is a brain issue, not a heart issue.  He could have a holtor monitor for 3 months and the next day after he has had it removed, he could have a pause.  Because its a brain issue, it can happen any time.  There is no rhyme or reason. 

My other concern is the development of neuroblastomas (cancer).  One sweet CCHS boy was tested every 6 months but he still developed neuroblastoma and lost his battle also.  Noah gets tested once a year for this.  Is this enough?  I don't know. 

The CCHS community is small.  However, we are close.  When one family cries, we all cry.  Our children have so much in common and even though they are fierce warriors, they are still fragile.   Sometimes we forget that.  We try to go about our daily lives as normal as possible, not dwelling on the possibilities of this crazy disorder.  We live our lives doing the best that we can, doing all of the right things, but still sometimes that is not good enough and we have to live with that. 



In memory of our brave CCHS warriors
Sloane
Landon
Tim
Brielle
Lucy
Allison

Decisions

One of the first decisions we had to make was whether to trach or use a mask.  For us, it really wasn't much of a decision.  We felt that a trach would ventilate Noah better and be more comfortable for him.  Now that he is older, we have to decide if we want to decannulate and go with a mask for ventilation. There is a lot of things to consider before doing this transition.  First, we would have to completely change ventilators, going from an LTV 950 to a Trilogy.  This would involve at least a 3 day stay in the hospital where we would have to learn how to use a whole new vent and make sure that Noah could get adequate ventilation from this new system.  Then, we would have to get him use to wearing a mask.  This would involve getting him one to use while watching tv, playing, and wearing it at various times during the day to acclimate him to the feeling of a mask.  During this time, we would have to make sure his CO2 stays within the correct limits.  Once he has acclimated to a mask, we would then find the right one for him.  After finding the right mask, we would then let him use it while sleeping and schedule a sleep study to make sure his numbers are good while using the new setup.  Then, decannulation would occur.

We have mixed feelings about decannulating.  I would love for him to be rid of the trach.  No more trach care and swimming while going under the water are two huge advantages.  The disadvantages would be the long process of switching over to a new vent and getting him to wear the mask.  Plus, the trach is a visual reminder that something is different about his health.  Once the trach is gone, there is no way for people to see that he has any health issues, which could possibly make them less careful around him.  We would also have to change the way we check his CO2.  We would more than likely lose our Medicaid help.  We would not have all of the trach supplies, but would still have to have the equipment (the ventilator, CO2 machine, Oxygen and the pulse ox).  Insurance does not cover all of this completely and we would have to spend more out of pocket to keep all of these machines.  It is going to be a very long process.

Another decision we have made is whether to do the diaphragm pacer surgery.  This was not that difficult for us to decide.  This is not our decision to make, it is Noah's.  A diaphragm pacer would be implanted on his diaphragm.  This device would be used in place of a ventilator.  At first, it sounds like a perfect idea.  So what are we waiting for?  I have read that there is a small chance that his diaphragm could be damaged during the surgery, causing him to require 24 hour ventilation.  I realize that the surgery has greatly improved over the years and the chance is small, however how in the world would we be able to live with ourselves if our decision caused our child who is only ventilated about 8-10 hours a day during sleep to be required to be ventilated 24 hours a day 7 days a week for the rest of his life.   At this point, we are not comfortable making that decision for him.  This is an invasive surgery and I have mixed feelings about doing this.   We are not willing to take the risk.  As he gets older, I am sure he will have questions and have his own ideas on how to take care of himself.  My job is to present him with the information and help him make an informed decision.

One of the big decisions we face now is school.  Noah is extremely bright and loves to learn.  I know he would do well in school.   The problem is having experienced people there who know what to do in case of an emergency.  I really do not like the idea of me going with him and sitting there all day, every day.  My goal is to make him more independent and realize that there are other people who can take care of him.  I am having so much trouble trusting people with his care.  It terrifies me that even the most experienced hospital personnel have never heard of CCHS and really do not understand the seriousness of the disease so how is the school system suppose to be able to handle this?  I can train them and explain things to them but ultimately I know that something is going to happen at school that could possibly endanger him.  A simple headache can mean his CO2 is high.  He has trouble regulating his body temperature sometimes so during recess a simple complaint of being too hot or too cold could be ignored.  During standardized tests the students are allowed to rest when they are finished with their tests.  Both Beth and Hannah have told me that they have fallen asleep waiting on test time to be finished.  This can absolutely NOT happen with Noah.  Those are just a few things I have thought of when thinking of school.  Unfortunately, there are not many cases like his so we really have no model to follow.  I guess we will have to figure this out as we go along.  

Once we pass the school hurdle, we then have to decide how to allow him to care for himself as a teenager and then an adult.  How can he have his privacy as a teenager when he wont even wake up when his ventilator alarms?  I'm sure he wont want his mommy or daddy watching over him while he sleeps as he gets older.  What about college?  How is he going to be able to go off alone and live in a dorm?  One of the huge dangers of CCHS teenagers and adults is drinking.  There have been instances where people with CCHS have drank too much, passed out and died.   Drinking is always serious but for people with CCHS it can be deadly. 

These are just a few of the decisions we face now and later.  I try so hard to be prepared for anything but I know that inevitably something will happen for which I am not prepared.  This thought terrifies me.  The fact that the decisions we make for him can impact the rest of his life is a huge responsibility.  I always use to think that CCHS was so much harder when he was younger and that things should get much easier the older he got.  I'm not so sure about that now. 

A Few Things I Have Learned from CCHS

1.  Don't compare--Don't compare your special needs child with your other children.  It's so hard not to compare, especially when looking at those baby milestones.  Instead of focusing on what your special needs child is not doing focus on what they CAN do.  Embrace every milestone and celebrate their accomplishments. 

2.  Be flexible--This one is so hard for me sometimes.  I have learned over the years to take things in stride.  Don't be afraid to improvise.  I have learned to stop stressing over the small things that I cannot change. 


3.  Rest whenever possible--I always took sleep for granted.  I've always been one who has to get their 8 hours.  Then Noah came along and I haven't slept the same since.  We have no nursing so I am the one who gets up for every alarm.  Some nights are worse than others.  Some mornings it's all I can do to get up and get the girls off to school.  I crave sleep like a junky craves drugs.  I have learned the hard way to sleep whenever possible.  When Noah naps, so do I.  There are so many other things I should be doing than napping during the day (laundry, cleaning, etc) but in order to function I have to sleep so a lot of things do not get done.  My house is a wreck most days but I honestly have no choice if I want to be functional.  Don't be ashamed of napping when possible.

4.  Make some time for yourself--I am so guilty of not doing this.  It is so hard with 2 girls, a husband and a boy with a ventilator.  I have been guilty of staying up late just to have some time by myself but this isn't the best thing because I pay for it the next day.  Inevetibly Noah will beep a lot that night and the next day I feel like the Walking Dead.  I have learned to take time when I can.  I go by myself on Tuesdays to pick Hannah up after school.  Beth watches Noah and I get 30 minutes to myself.  Sometimes I hide in the bathroom for about 30 minutes.  Take the time when and where you can get it.

5.  Make some time for your spouse--This one is hard too.  What do you do when nobody wants to keep your special needs child and your and your husband want to go out?  Take them with you.  We have done this many a time.  I must say that it is difficult.  I can't tell you the number of times that the kids were in bed and Chris and I sat down to watch something on tv together.  It's sometimes taken us a whole week to watch a 30 minute episode together because either one or the both of us end up falling asleep.  Do your best to find some time.  Take 5 extra minutes and have coffee together.  Make an impromptu phone call during the day.  Send a sweet text or email.  I read somewhere that the divorce rate for parents of special needs children was over 50%.  I can definitely understand why.  

5.  Don't be afraid to show your feelings--It's ok to be sad.  It's ok to be mad.  The life of a special needs parent is demanding and difficult.  I can't tell you how many times I have cried with frustration, how many times I have been so mad at doctors, the equipment company and the medicaid people that refuse to show up to my house on time.

6.  Do the research--Living with a rare disease means that doctors do not know much about CCHS unless we tell them.  I have done countless hours of reading about CCHS, talking with other parents, searching the internet, all with the intent of becoming more knowledgable about CCHS.  I made myself a CCHS binder.  It is now full of articles and resources.

7. Your home is your sanctuary--Make sure everyone honors this.  As a special needs parent, you will have so many people coming into your home.  Nurses (we never had nurses but I've heard from a lot of parents who do), therapists, the equipment company, the medicaid agency.  All of these people come in on a monthly basis.  That doesn't seem so bad but when you have 6 people who all want to come at the end of the month, all on different days, it gets so frustrating.  These people have learned to call me the Monday of the week they want to visit.  They do not just show up.  That's not to say that sometimes things don't work exactly as I planned but I do not allow them to take advantage of me.  If they are suppose to be here at a specific time and are 30 minutes late without calling then I leave if I have somewhere else to go.  I do not wait on them.  Do not let them take advantage of you.

8.  Don't be afraid to fight the system--We had an issue last year with anethesia.  Since then, I do not trust them at all.  I made this known to the hospital.  It has taken over a year but there is now a CCHS policy regarding anethesia in place.  We have decided to allow them to do the yearly tests but have made several requests.  If these are not met, then they are not touching Noah.


9.  Make time for your other children--We were determined to allow the girls to still do things even though it was more difficult with Noah.  Many a time I have packed up all of his equipment and gone to the dance studio to wait for Hannah.  We have sat in the car waiting on both girls to get out of piano.  And this past year, we packed everything up multiple times to go out of town for Beth's volleyball games.  Yes it was a hardship and not the easiest thing to do but we did not want them to begin to resent Noah.  We wanted them to see that we realized they are just as important as he is, even though he requires a little more care.

10.  LIVE--To me, this is the most important one.  I have seen so many trach/vent parents who are scared to go out during flu season, who got rid of their pets, who will not burn candles or spray perfume, who do not go to the beach or let their kids swim, who keep their child in the home at all times unless they have a doctor's appointment.  The way I see it, having a special needs child does not mean you should isolate yourself.  It may be harder, it may take a lot of planning and a lot of work but it is so important to treat the special needs child as "normal" as possible.  So go out, have birthdays, go to the zoo, visit the beach and swim, go to the park.  LIVE YOUR LIFE without being scared.

A guest blog by another CCHS mom, Sarah Y.

 When Noah was first diagnosed with CCHS, it was so overwhelming.  There was literally nobody here to talk to that could understand everything we were going through.  Then one day I received an email from another CCHS mom.  Turns out she lives in the same city!  I was so excited.  We met in the lobby of Children's hospital.  Immediately I felt a kinship with her that I had not experienced with anyone else.  I realized she was going through everything we had experienced the year before.  Even though I wish CCHS on nobody, I am so glad we walk this road together.  

We are now trying to raise awareness of this rare disease.  For the first time, UAB is hosting a rare disease day event.  We have been interviewed for a local parenting magazine and NORD has allowed Sarah to write about our journey as rare disease parents.  I have included the link to her article.  

Thanks Sarah for sharing Madi with us and for being there for me. 



http://blog.rarediseases.org/rare-kiddo/