Friday, January 10, 2014

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.

Wednesday, January 1, 2014

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.