Sunday, August 31, 2008

Our Future Blogger...

A few weeks ago Faith's OT brought a computer program for Faith to use. She can just bang on the keyboard and the characters will move. Always the screen junkie, Faith loves it! It's only a matter of time before she starts blogging herself!

I feel as though I offended some people with my last post. My apologies if I came across pessimistic and self-absorbed. It was never my inattention to make those of you who do not have a sick child feel bad. It is only human to think about the grass on the other side of the fence from time to time.

For sometime now I've been thinking about where to go with this blog. Before Faith was born I didn't even know what a blog was. One of our nurses in the NICU introduced us to a family who had set up a blog to inform others of their daughter's progress. During Faith's hospital stay the blog was a way to update people on her condition. This was especially helpful during Faith's NICU stay when things were pretty touch and go.

Now that Faith is home and doing well this blog has become a journal for me. At the end of the day it's a way to reflect and process everything we've gone through. In doing this there is a degree of vulnerability, as we publish our thoughts for everyone to read. This especially difficult when almost everyone we know in our personal life follows this blog. Lately I've thought about stopping the blog. I feel as though it has served it's purpose and it's time to begin a new chapter. But then I am reminded of the people who have become a part of Faith's life. Sometimes I run into the most random people who tell me they have been following Faith's story and how it has touched them.

I am a frequent follower of other people's blogs. Some of these blogs are about children who are battling chronic conditions and their status is pretty day to day. When I read these blogs I feel silly about writing about the ordinary and mundane things like Faith's field trips. I also follow blogs by families who have been trough tragedy or are enduring their own hardships. They also write about the day to day stuff like birthday parties and field trips. I enjoy peeking in on their life and reading of happy times, especially when I know where they have come from. It makes the sweet moments even sweeter. Without sounding narcissistic I am reminded that maybe some of you feel that way about our blog, especially those of you who have been with us since day one.

So I am not sure what we are going to do. I've thought about setting up a personal blog where I can journal, vent and express my feelings about adjusting to life with a medically fragile child, or I might just continue griping on here and if you'd like to hang on with us for this ride we always have an open seat, window and all.

Thanks for hanging in there with us,

Jen and Brian.

PS: This blog is not just for us, or for you, but for Faith. One day I hope she will be able to read not only the stories of her life but of her parent's as well. Hopefully she won't remember these first few turbulent years of her life, but will have these collections of writings to reminded her of the miracle she is!


Anonymous said...

I have been following Faith's journey for awhile now and I would hate to see you stop blogging about her. I am the mother of a f/t son and preemie twin girls -also born at 25 weeks. One of my twin girls passed away at 15 months old due to complications of prematurity. She was home for awhile and then spent 6 months in a PICU. She was trached and vented in the PICU (she had been home on O2 only) and we thought she would come home on a trach/vent. We would have been you and I was scared to death. One thing I have learned is that the fact that my daughter's lung were to badly damaged by this time and she did not come home does not make your journey any easier. It does negate your pain, your loss of a f/t child, what you go through daily with a medically fragile child. Everyone does have a story, there is always a worse case. I lost my daughter. Her twin could have been lost as well or have major issues due to being born so early. She is perfectly healthy-no issues, no extra doctors, no pt, ot...nothing. It doesnt change how I mourn for her sister or still feel sad that my twins weren't born f/t. I still stare at newborn twins in their double stroller and still want to know why not my girls?
You have every right to your feelings and to blog what you feel. One thing I tried to tell my friends while I was spending my days at the PICU with a very sick baby was that I wanted them to please continue to share their lives with me. It was OK to chat about husbands who can't change the TP roll or complain about being tired because their toddler was still waking up at night. Yes, my life was way more tragic and scary but that didnt negate their lives.
Whatever you choose to do, please do something that will allow those of us who have been following Faith to continue to learn about how she is doing. Thanks R

PS You have been through a great deal. IMHO, you have earned the right to be pessemistic and self absorbed at times.

Hope said...

I've been following your journey for months now, and I love reading about the small things, day to day, field trips, etc... It inspires me. I LOVE that Faith has such wonderful parents, that they do take her out to experience "normal" things, and write about it at the end of the day. I love that you see things from her point of view. I have learned alot from reading your blog. I know that if Ava gets trached this winter, it won't be the end of the road. I know this because of the daily life posts you write about. It gives me hope.

Hope said...

And I agree with the previous poster, you have earned the right to be pessamistic! Your family has been through ALOT to be finally able to write about normal life. Enjoy it! I'd like to foolow Faith's story through the removal of her vent, trach, etc... when that does happen. I want to cheer with you.

Ann said...

Jen -
I too have heard on more than one occasion to "Cowboy up" because it really "could be worse". As if we don't know that. As if we haven't spent enough time in a NICU/PICU, around sick and dying children. Yes, we are fully aware it could be worse and that there are many other families in this world who are facing their own challenges. However, that does not negate our right to be sad, to be mad and to wish 'til our dying day that it was better. We are not selfish, self-centered, ungrateful people. We love our children more than life itself and we will go to the ends of the earth to do right by them. But, we are entitled to acknowledge our loss. I have three healthy children, but that doesn't make the fact that Jack is not healthy okay. I'm just as entitled to four healthy, typical kids as any other mom. It really makes me mad that someone would make you feel guilty for feeling sad, for feeling a loss and for articulating it.

I agree, your blog is for you and it's for Faith and the rest of us are privileged to share in your journey.

Please don't ever feel like you can't say it like it is. It's much healthier to get it all out -- the good and the bad. We love you both ways.

Many hugs.

Anonymous said...

We love following Faith's journey through your eyes. God has given us all feelings and even the "not so attractive" ones serve purposes that we may never, ever know. Please don't stop being human and sharing your true feelings. Your blog serves as an inspiration to so many. Please don't "sugar coat" the journey and don't feel bad about being honest. If you are less than honest, that sets a standard for others that is unattainable and can only be used as a tool to make others feel guilty. Shame on anyone who judges you for your honesty. I, personlly would greatly miss your blog and the joys and sorrows of your everyday life.

Anonymous said...

I hope you continue to express yourself and not censor anaything. The blog is more for you and Faith- if we on the outside get anything (and we do) it is extra. I think blogs should be to share all kinds of ideas and thoughts not just the ones you think others want to hear. My last comment was meant to give you another insight into how "Normal" situations are not always as you may perceive them to be. Hope you did not take it any other way. I agree with the writer who said you have the right to be complaining if you feel that way. I think if you are too tired to continue-then don't. You have given many people a gift in your sharing but it may put pressure on you. Maybe monthly updates? If it helps you- then do it- We all want the best for you.
Love, Libby

Karen said...

I hope you don't change a thing about your blog. I came across this by way of the trach boards b/c our daughters stories are sooo similar. Natalie was born at 25 weeks and she is at home with a trach and vent. I follow your story b/c is keeps me sane and makes me feel that we are not in this alone. I also have a 4 year old daughter (her name is Faith) who was full term no issues. People say well, your lucky you have one healthy child. B/c I have one healthy child does not make it any easier having having a child with huge medical needs. Unfortunatley nobody can possibly understand what it is like, unless you are also living it.

This blog is a story for you and Faith. It should contain all the ups and downs that go along with her story. When we take Faith away for the day to get some special Mommy and Daddy time I always have myself a good cry b/c our family feels incomplete without Natalie being with us. I think I have earned that right to cry, and you have earned your right to vent, cry, feel however you want....if you didn't, then you should be worried. Hope Faith is doing well.


Anonymous said...

I can't remember the last time you offended somebody by your writing since high school when you wrote a commentary about Nalgene water bottles, drawing parallels between them and the negative attributes of jocks.


Roberta and Merrill said...

Jen: It has been a while since I checked in here. I hope that you see just how wonderful your blog is. We all need a place to express just how we feel about the day to day lives of our children, no matter how they are.

This is a wonderful blog and I can't believe just how wonderful Faith looks. I remember when you were just praying that she made it and look at her now.

Thanks for sharing.

Anonymous said...

Hey guys! I haven't been on here in a while, but I am very glad that I did!! She looks so good..and healthy! Like I said, I haven't been on here in a while as Bri and I talk more frequently, and she has just grown so since I have last seen pictures of her You guys are is she!

Love ya,
Mike and jen

Anonymous said...

Hey Hey sweetie!

Yes yes its your long lost Auntie Susan! You need to explain to your mommy and daddy that stopping your blog would be SO very sad!

As you are not just THEIR child you are a child of MANY MANY people who love you and have followed you from day one!

I know being your FAVORITE Aunt ( he he) I will see you and have to joy of holding you again in myamrs but some peopelonly have this blog to "hold and love you" BUT tell your mommay and daddy never feel guilty about being honest..THATS what we LOVE about them! =)

So just tell your mommy and daddy write when she can and noworries when she needs a break! They definietly deserve that!

We love and miss you SO VERY MUCH! I hope to see you soon.

Aunt Susan, Uncle Mike, Steve and Chelle

PS Brian and what your heart tells you to do =)

Anonymous said...


You don't ever need to apologize for how you feel. No one can know what your life is like except you. You and Brian are terrific, dedicated parents and for some reason God has chosen to give you a very special girl with very special needs. You are to be commended for all you do for Faith. If there are days that it seems overwhelming you should feel free to say so. (Most of the rest of us complain about things that are a whole lot more trivial than what you face on a daily basis. In fact we don't just write a little note about it we scream and yell and act like children.)The worst thing you can do is hold it all in. You feel free to share what you really feel.
Besides, look at all the other comments posted. Your honesty and transparency is a blessing to others. They know they are not alone.