Tuesday, January 20, 2009

Kelly's Kidz

There was a time when I could not see the light. A time when I literally struggled to get through the day. A time when I cried so much, and felt so guilty, that I wondered if I would be able to be a good mom to my girls. I literally pasted a smile on my face and forced myself to put one foot in front of the other to go through the motions of being me.

I got to a point where I needed help. I went to a psychiatrist and started taking antidepressants, which on one hand worked to improve my mood, but on the other hand caused all kinds of rather unbearable side effects like nausea, sleeplessness, and ringing in my ears. Still, they worked to get me out of the pit I was in, and eventually I started feeling better.

The other thing I did, which may have been even more invaluable, was to surround myself with a support network of people, online and in real life, who really knew what I was going through.

There was a time when I was desperate to hear about the "good things" even though I didn't believe in them.

Now, even while acknowledging all of the heartache and sorrow and hard work that goes into being the parent to a child with special needs, I finally get it. I am in that place where I see the good things.

One of those good things has been the opportunity to develop relationships with people I would have never known otherwise, and one of those people is Kelly.

Kelly is mom to Maggie. Maggie is a beautiful little 6-year-old girl who lives in our city and goes to kindergarten in our school district. She also has CP, drives her power chair using her head, and is learning to talk using a computer. She is pretty inspirational all on her own. I'm glad to know her, and I am glad for my girls to have her as a friend. Maggie was Eden's inspiration for finally giving the Creepster Crawler and the head float a chance! Both are things she wouldn't touch until she saw Maggie using them:)

Kelly (aka "Maggie's Mom") has been so generous to us in terms of loaning us equipment, and passing down things that Maggie has outgrown (such as the head float). And if that wasn't inspiration enough, she has started a non-profit called Kelly's Kidz, to provide financial assistance and equipment for children with special needs, when their families are unable to obtain it on their own. Until you try to navigate the world of raising a child with physical challenges, medical equipment, and health insurance, you have no idea the barriers that we face in obtaining the things our kids need. Even with great medical insurance, it gets pricey (and that's an understatement).

So, way to go Kelly! It is so very exciting that Kelly's Kidz is up and running, and we are totally looking forward to Maggie's Lucky Strike Challenge at the beginning of February. Thank you so much for all of the support you have provided us, and for all of the children whose lives you will touch in your endeavors. I am proud to call you my friend:)

Please visit Kelly's Kidz website, donate if you can, and for those in the area, join us for their first big fundraiser!

**And yes, that picture at the top is a picture of Eden sitting...on a bench.


Anonymous said...

Great pics!
Glad you have good friends like Kelly!

Anonymous said...

I don't have an account here but my name is Rebecca and I've been following your blog for a little over a year (maybe more?). I'm only 18, but your story and the story of your family has been endlessly inspirational to me. Your girls are beautiful and they have accomplished some amazing things, and I'm sure they will continue on in such a way.

I want to than you for the inspiration and would like to congratulate you on Eden sitting (I teared up when I saw that post!). I'm a struggling college student so I don't have much, but I really would like to donate something to those who need it more than I do. I've talked to the daycare I work at and we're starting a staff and parents March of Dimes team and I'd like you to know that this is largely because of you.

Again, thank you so much and best wishes.

hallegracesmama said...

Sitting!? On a bench!!! Eden, you are amazing!

Anonymous said...

I am willing to bet that there are many more, like Rebecca, that your family has inspired, but whom you may never know. Even when you were emotionally needy and struggling, you gave to others through this blog. My thanks and congratulations. Barbara

Kendra Lynn said...

You are an inspiration to me...thank you for reminding me of the good things in life. Eden looks like such a big girl, sitting on that bench. And when we look back at the photos of her as a preemie, wow...I am so overwhelmed by all that God has done. You are a marvelous mom, and your bravery is beyond amazing.

Thanks for keeping this blog, and for all the good you do.

May God bless and keep you and your beautiful family.


Jolly Johnstons said...

Go Eden! Thanks Billie for sharing your story with us, you are such an inspiration!

Anonymous said...

I'm glad things are looking up for you guys; expecially Eden sitting!

Your girls(and family) are amazing and inspiration. I hope you keep writing because I would like to see how far they go in their lives.

Anonymous said...

Great post bills, as usual :). That picture of Eden is way super duper cool, and I'm TOTALLY diggin' the head float. I have visions of Grandma Candy's this summer. Much love to you. Jess

Katy said...

I know this post is about Kelly's Kidz and I think it's a great thing, but I have to tell you that seeing Eden sitting there at the top of the page makes me absolutely hopeful. Thank you.

Anonymous said...

Hi Billie,

I've been following your blog for about a year and has never posted a comment. I, too, have a child with special needs. She just turned 4 and I, unfortunately, is not in your place yet. Everyday is a struggle. I am still grieving, I am still in disbelief that this is my life and I am still in the place you were before. I so wish to be where you are and be at peace with this but I honestly don't know how. I feel like I'm drowning in sorrow, in pain, and I don't know how to get out of this. I often think I need help but where do i find the time ?? I barely have time to brush my teeth and I feel guilty even leaving my kids to do something for me like get a haircut. Anyway, you are an inspiration and I hope to be in your place someday.

Chantal said...

Eden, you so rock!

What an amazing sight, to see Eden sitting up all on her own. You know, I think it's more exciting that when a baby does it. Really. The work she does and the determination she has make everything she does that much more exciting. The possibilities for that little girl are endless.

And she has the most wonderful smile.

How blessed your family is to have those two very special girls as part of it.

Melissa said...

Oh, Eden!!! That picture is simply amazing! I don't know what is more breathtaking...the beautiful sitting or that proud, satisfied look on her face. She really looks incredible!

Thanks for sharing the info about Kellys Kidz, too, Billie. I love it when you share resources like that with all of us.

But..honestly...that picture is the real beauty of this post!

the three amigos said...

I noticed Eden sitting...SITTING...on that bench right away! Wow! She looks fantastic!!!

I've followed your blog for a very long time! Your girls are beautiful! I know you are very proud of them!

Kate Giovinco Photography said...

I think your kids are incredible. As I mentioned when you posted about Eden sitting by herself. I had tears in my eyes. I started reading around the time they were born and every milestone warms my heart.

I smile from ear to ear thinking of all the wonderful things Eden can do. I don't even think about the things she can't. Because really do we focus on what people can not do in life, I try not to I try and focus on what they can.

I guess what I am saying here is I am always cheering your girls on. They are amazing and incredible little girls who are going to grow up and be incredible women!

Anonymous said...

Gosh, that is a wonderful idea and clearly an amazing woman. You have some wonderful people in your life, most especially your brave and beautiful little girls.

Kristin said...

I saw the pic and instantly tears sprung to my eyes..proud tears.

I may not know you or your girls face to face, but I feel as though I know you all and the pride that welled up within me for what Eden has accomplished is phenomenal. And I know that alot has to do with her parents being very determined to let her shine.

Please pass on to Kelly and Maggie what a wonderful thing she is doing and that we wish her every success.

Anonymous said...

Hi Billie,
Thank you for highlighting Kelly's Kidz! I think it's a great venture (that we may need in the future) and we'll see you at the bowling alley! :)

Ellen Seidman said...

Wow, so much to say. First off, Eden's sitting is AMAZING. Second, I went through what you did, too, after Max had a stroke when he was born and we knew he was going to have cerebral palsy. Maybe two years worth of sadness. I probably should have gone on medication, but never did. I did try therapy. It helped a little. Mostly, time has helped the most, and my husband, and friends. And now, blogging. Third, I am amazed at Kelly and what she's doing. Props to you, Kelly. I am going over to make a donation.

Genevieve Ross said...

Wow, you get a lot of comments! I have a daughter with a chromosome deletion. She was not premature but faces many of the challenges your girls face. We are getting a pony walker for Zoe (my daughter) and I was looking for info on the internet and your site popped up. I just wanted to say what a beautiful family you have and it is nice to see how much you appreciate your wonderful girls. My daughter will be two soon (it has gone by so fast!) and I too know the feeling of being in a pit. Luckily I think I am climbing out of that pit now. Thanks for posting pictures of the pony walker- now I have a better idea of how it could work for my daughter who can not sit or stand on her own. If you ever want to check out my gorgeous family, feel free: http://zoes1p36blog.blogspot.com/ As you say, you meet so many different families that you would never had met if your child did not have disabilities. I can't say I have ever been bored as a parent!

Anonymous said...

Love and smooches to all,

Jennifer said...

OH wow. Way to Go Eden! I stopped and looked at this picture for a good 5 minutes before reading your post.

Anonymous said...


I'm one of those strange readers that doesn't know you and doesn't have a child with a disability. I, too, found your site when trying to find out what a pony walker is after seeing it mentioned on the site of a local child.

You have a wonderful writing style and ability to express yourself; of being real about what is going on without being depressing. The end result is that "outsiders" like me receive a tremendous education. I commend you for what you are doing for others in your circumstances, but also what you do for people like me -- which will hopefully come back to you indirectly through compassion and proper response to those who may appear different (but aren't!).

And the final straw to making me comment is the photo of Eden sitting. It really is a beautiful thing. She looks so relaxed, but I know in reality she is working hard in that photo (thanks to the teaching of you and others!)

Rachel Dominguez said...

Yeah!!! Kelly!

I love the picture of Eden sitting. She is doing so well! I am so proud of her (even though she doesnt know me)...I am so happy for her and all her tremendous progress.

Carolynn from Western Australia said...

Hi Billie, John, Eden and Holland,

My name is Carolynn and I have been reading your Journal now for about 6 months. I can't remember how I came across it exactly. The reason I took an interest is because I work in Neonatal Intensive Care and have been in the same Unit now for the past 26 years and absolutely LOVE it.

The reason I have not commented so far is because I wanted to read as much of your Journal from the beginning. You are an amazing Mother Billie and think you cope extremely well. There are many mothers of normal full term kids out there who do not cope half as well.

The very first thing I noticed today when I logged onto your Journal was Eden sitting on that bench all by herself. What a TOTALLY AMAZING ACHIEVEMENT.

The one thing I want to say to you is that it is TOTALLY OK to have off days, it is healthy. I will continue to follow your journey with the girls and look forward to watching them grow up and go to school. Eden is doing so well with her Cochlear Implant, can ask you a question, why did they wait until she was 14 months to put it in when they discovered her deafness at 6 months of age???

I'm sorry you have had so much trouble with their eating but it seems to be a common problem with preterm infants for some reason but they all seem to grow out of it eventually.

I presume you have access to my e-mail via this comment and you are most welcome to write to me.

Take Care
Lots of Love to you ALL Carolynn :-)

Billie said...

"why did they wait until she was 14 months to put it in when they discovered her deafness at 6 months of age???"

The biggest reason is that the FDA has only recently (within the past several years) approved the cochlear implant for children at 12 months of age. I believe before that it was 24 months, but was lowered and hopefully will be lowered even more in the future!

We also had to jump through several hoops before being approved for the implant. One is that she was required to do a trial with hearing aids for 3-6 months. Also there is a lot of auditory testing (aided and unaided) that goes into it, as well as scheduling MRIs and CAT scans, bloodwork etc. Then there's the whole insurance approval rigamorole!

On top of that, after we definitively knew that she had a profound bilateral hearing loss and was a candidate for the CI, I did some research and wanted to switch hospitals. That may have added a little to our timeline, but they were great at understanding my urgency and really helped us move things along as quickly as possible.

She ended up having the surgery at 14 months, which was actually about 10.5 months corrected age, so I felt pretty good about that!

We're just beginning to ponder a second implant. The jury is still out on that...

Ginny said...


I have been a follower of your blog for years now. Pretty sure I've posted a couple comments before. While moving over the holidays I hadn't been able to check all the blogs I follow. I was SHOCKED when I checked in tonight and saw the photo of Eden sitting on the bench! My husband, not having any idea what I was talking about, thought I was nuts when I yelled "SHE'S SITTING!!". lol

Way to go, Eden! I'm so very happy for you guys. What a huge accomplishment.

Contxi said...

You are the best Mom :))

Anonymous said...

Hey I know I already commented, but I checked your blog again today and Eden is so stinkin' cute! Sitting on the bench, so happy.