Tyler James Hendricks

Kristine- I watched my father pass away from pulm...

2010-03-13T08:39:37.658-08:00

Kristine-

I watched my father pass away from pulmonary fibrosis, I've been in your shoes too...even though in the back of your mind that you know if things go "correctly" you won't outlive your mom, but that doesn't make it any easier.

A few years after my father's death, Gavin was born...and as you know the CF diagnosis. I felt like I was being haunted by my history with my dad and I was never going to get away from it. I clearly remember say, "it's happening all over again!"

It's ok to have bad days...I honestly blame it on the weather! No matter where you live, at this time of the year we are just DONE WITH WINTER! Frustrated with the season, frustrated with being inside and frustrated with LIFE! So when life throws you off course at this time of the year, I think it just makes everything that much harder to bear.

I have to remind myself, our CFers are going to be SO much stronger, braver, patient, perseverant (is that a word? lol) etc. than the typical kid. Gavin has barely been on this earth for a year, and he teaches me each of those skills each and every day.

I wish I had words of wisdom that could make everything better for you, but we know its not possib;e. Just know that it's ok to have the not so good days, its ok to grieve, and its ok to be sad...but then the next day you gotta wake up & keep on truckin! That's what us Super Mommas gotta do!

Love you lady!

Hi Kristine, My name is Christie and I'm 5...

2010-03-13T07:17:12.994-08:00

Hi Kristine,
My name is Christie and I'm 53 years old with cystic Fibrosis. My mother has COPD and Emphysema. For years I asked my Mother to quit smoking and she always said "I'm going to die doing what I want to do" My argument was "you want to die like Grandma (My grandmother died of lung cancer she smoked for 30 years)One night she woke up and couldnt breathe so Dad had to call 911. She spent the night in the ER and never smoked again. She has these "bouts" now about once a month and each time she says "I don't want to live like this anymore.She has asked me several times. How do you do it? I just answer I don't know. I know God gives me strength and so does my Husband and Son. I don't think about tomorrow, I live one day at a time and never pass up the oportunity to have fun. I never have a "Well I should have done this or that...Now about you beautiful son. Every cystic patient is different. Look at my age. Suppose Tyler live to be my age or older. I know a man who is Double Delta and he is 79..You will find the strength when you need it, as for feeling helpless and usless.You have children that think you can do no wrong nd love you very much. You are thier Hero...Hold your Mothers hand and tell here you love her. Love heals

look how cute tyler is!! i am sorry you are feel...

2010-02-24T18:05:16.030-08:00

look how cute tyler is!!

i am sorry you are feeling so overwhelmed... i remember feeling similarly about 16 1/2 years ago, when my son was first diagnosed.

first, i do think if you have any concerns about your cf team, it would serve tyler well to find a different doc. we went to three before settling with one that was the right fit, and we have been with him for almost 15 years. BUT, you could be right, that it is just the nature of the disease, coupled with your own newness to it all.

i don't know the health status of mr. tyler, but if he is doing okay, i would encourage you to get him out and about. getting him exposed to some of those normal bugs might actually help develop his immune system. my son has grown up in public school, around people, in creekbeds, in oceans, on mountains and is actually sick less than the rest of us. i know it is different for everyone, though.

please feel free to contact me with any questions you have or if you just need to vent. it is a VERY long road ahead, and you need support.

Hello there, I know how you feel.... Also mom of t...

2010-02-03T14:39:40.461-08:00

Hello there, I know how you feel.... Also mom of three older kids and one with CF.... It is also hard for me to know what to do or not to do... Our CF Team has been teaching us to just live.... Live like we always would, yes take percausions when needed, wash hands wash hands wash hands lol, but dont not enjoy life in the name of CF..... So I just try and look at the older kids, and if they get to do it so does he... Actually Lane is the most durable of them all... I say he is CF Made tough, and believe me they are.... So we just live our life to the fullest and I try and watch closely to the first signs of any illness and go get checked out right away.... Of course Lane is on an antibiotic ALL the time, and I know that helps alot to prevent illness for him... Anyway that is what our doctors say, just some food for thought.... (but I still worry, I am a mom, its our job) :) Of course every child is different, and every CFer is unique... Much love Marcy....

Hey Kristine, I feel similar, I want to share the...

2010-02-02T20:49:46.572-08:00

Hey Kristine,
I feel similar, I want to share the fear I struggle with everyday on my blog but I don't know how to even start.
I am constantly worried about going out in public as well. People love to come up and try to touch Cayden and I hate it. People also tell me not to put him in a bubble and I know I say it too, but I also don't want to purposely expose him to hazards.
I have lots of days where I cry and am angry at the diagnosis. Friends and family all tell me that crying and being upset isn't going to help Cayden but it is just so hard sometimes not to know what the future holds for this ugly disease.

I just found your blog today. I can’t get over ho...

2010-01-28T13:37:14.344-08:00

I just found your blog today. I can’t get over how much of what you say hits home for me. I feel like the most paranoid mom on the planet (and I never expected myself to be that way as a mom). Every decision we make is weighed by what is best for our child’s health and at the same time trying to balance their life socially. It makes me feel somewhat normal to hear of other mom’s experiencing the same thing as me. Thanks for sharing.

I can so relate to this post. I too have often fe...

2010-01-04T07:30:11.698-08:00

I can so relate to this post. I too have often felt put-off by the response you get when people learn of this illness. I don't know either what response I would prefer but definitely not the one I have gotten. It is a sad occurrence but not a loss. I hope that 2010 brings many new and exciting milestones for Tyler and that he defies all "statistics" for years to come. Good Luck and take care Mama....

Hi, my son is almost the exact age as Tyler and wa...

2009-12-26T11:12:15.048-08:00

Hi, my son is almost the exact age as Tyler and was diagnosed with CF at birth. Apparently, Tyler and my son Bennett have the exact same genetic mutations: Delta F508 and 621+1G>T. Here is my blog: http://bennettgamel.blogspot.com. I'd love to keep in touch as our boys grow and we cope with the shock of our life! Do you have a facebook account or email? My email is breckgamel @ yahoo . com. Thinking of you.

Hi there! My son was diagnosed at 3 weeks, he is ...

2009-12-22T15:52:56.325-08:00

Hi there! My son was diagnosed at 3 weeks, he is now 2 1/2 months old. Everything is still very new and I still have lots of learning to do but I find the CF community online is so great and has been so helpful so far. Even with the meds, salt, and physio, these little guys are the most amazing little babies! Hope you have a great Christmas, filled with lots of joy and love!

Hello! My name is Margaux and my 9-month old has C...

2009-12-21T21:56:06.004-08:00

Hello! My name is Margaux and my 9-month old has CF. I was prenatally diagnosed but it was a huge shock for our families. I would love to add you to my blog if so :)

Aww you literally made me cry...in a good way of ...

2009-12-21T18:21:07.805-08:00

Aww you literally made me cry...in a good way of course! I love having you as a friend! Have a very, very Merry Christmas and give that little one a big sloppy kiss from Gavin and me!!!

What is normal for us may not be normal to others....

2009-12-21T13:58:47.188-08:00

What is normal for us may not be normal to others. But if we live in a depressed, paranoid life, then how can we cherish the wonderful little lives we have created?

I have taken Carson to at least 11 different states and I end up taking A LOT of equipment, but his feeding pump, pulse ox, nebulizer, and portable O2 isn't going to stop us. LOL

I hope that you find in time that everyday gets a little easier. I have my moments when I'm exhausted and feeling a little overwhelmed. That is normal. But I have a great support system through friends I have met on the blog and outside the bloggy world. I hope that you can experience that as well.

Merry Christmas to your beautiful family

Ashley, It is so nice to see how understanding y...

2009-12-20T21:25:39.325-08:00

Ashley,

It is so nice to see how understanding you are. I have a three year old with a lot of medical issues and I constantly worry about my 13 and 14 year old feeling neglected or not as loved.

I bet your brother just adores you. Keep up the good work. I know from being a mother, your mother is very proud of you.

This post is from ashley, tylers sister.

2009-12-20T20:44:21.531-08:00

This post is from ashley, tylers sister.

It's ok to be overprotective...it's flu se...

2009-12-20T10:30:21.175-08:00

It's ok to be overprotective...it's flu season! You'll discover that one of the best things about having this blog is that family/friends will have fewer questions. Whenever we have a clinic appt/new news in the CF world/Gav starts a new med etc...I talk about it on the blog, what it means and how it will affect us. Then, when we see family they are so excited to "understand" CF :) It will also help people you are around to wash their hands, take off the shoes, and stay away if they are sick. Hope you have fun seeing the rest of your family!

I found you on Nathans blog, and wanted to welcome...

2009-12-20T10:30:15.371-08:00

I found you on Nathans blog, and wanted to welcome you to the blog world...... My son Lane also has CF and I too have 3 older children... My thoughts and prayers are with you and your family... They are many many wonderful CF families online that will be a huge source of information to you as well as support... I know they have all helped me tremendously.... God bless and MERRY CHRISTMAS!!! Your little Tyler is Preciou...

Phoenix's Mom directed me to your site. Welco...

2009-12-20T06:43:19.612-08:00

Phoenix's Mom directed me to your site. Welcome to wild world of Cystic Fibrosis & blogging! My daughter, Reilly (6) has CF, too. Each day is something different, but you do get used to it. Hang in there, and if you ever have any questions, feel free to contact me! (curecf4reilly@hotmail.com)
Cindy

I am a single mother to three boys. My oldest two...

2009-12-19T21:34:28.486-08:00

I am a single mother to three boys. My oldest two spent more time with family members and the sitter than me. I felt the same way but now that they are 13 and 14, they know why I had to do it.

My 3 year old is Carson, he is my youngest son. He was by far the hardest pregnancy and also has the most medical issues. Carson has failure to thrive, severe asthma, severe acid reflux, and aspirates when he eats and drinks. I have missed a lot of work because we are always at appts or in the hospital, or just home in isolation. Carson is currently on home O2 and has a feeding tube.

We were tested about a year ago for CF and it did come back negative. Even though my son doesn't have CF, I can relate to having a special needs child.

So with all that said, welcome to the bloggy world. Your son is such a cutie. I will put you on my follow list if you don't mind.

God bless and have a great Christmas.

My daughter Breezy also has CF. Breezy was undiagn...

2009-12-19T20:31:53.498-08:00

My daughter Breezy also has CF. Breezy was undiagnosed until the last year at 4 years old and those 4 years of not knowing why she was having problems or how to help her were terrible. When she was born there CF was not part of the newborn screening. Now we know and she is doing wonderful. This road is a hard one to travel but these babies are special and brave, her attitude and tolerance for CF has truly made her my hero. Blogging is great it helps keep us CFmomma grounded and in high spirits. Welcome~ Breezy's Momma Jessie

Absolutely! It really bugs me too! I'm a total...

2009-12-19T19:47:26.785-08:00

Absolutely! It really bugs me too! I'm a total germaphobe lol

Hi Kristine~ This is all too familiar to me. I was...

2009-12-19T17:45:13.860-08:00

Hi Kristine~ This is all too familiar to me. I was a first time mom. My daughter Ayla is 2.5 and it was a total shock to us. She had a bowel obstruction so we were prepared for surgery but not for this diagnosis. I am still dealing with it, learning about it. And getting a little better at not crying every time I say the word...CF...I am so glad you are blogging. You are waaay ahead of me. I really wanted to sulk and not share any of my thoughts with anyone until very recently. I have a blog as well: www.thebreathingroomcf.blogspot.com also dedicated to my daughter. I have become one of your followers and look forward to watching your little man grow. Take care, and if you ever need to talk/email..my adress is on my blog.

take care

Welcome to the blogging world! You'll find all...

2009-12-19T17:44:46.740-08:00

Welcome to the blogging world! You'll find all kinds of great support here. Tyler is beautiful, I can't wait to read more of your journey.

It is true. Having a baby with CF has really opene...

2009-12-19T11:20:49.055-08:00

It is true. Having a baby with CF has really opened my eyes to all the germs people carry around. All the time I have parents at the daycare where I work continue bringing sick babies until they reach the limits of what we allow (101 fever).