Carter's Hope

Thank you so much for all of the comments, emails, and messages about our plea for help with our new project. You have helped us to see exactly what we need to be doing.

We are very excited to announce Team Carter’s newest project, Carter’s Hope. This is a place where we will be providing support for parents who are just learning that they will join our world of Special Needs Parenting. We want this to be a place where we can show that no matter what there is always, ALWAYS HOPE.

I hope that you will join us in spreading Carter’s Hope by sharing your story about your journey in the special needs world. As this site grows we will be adding sections full of information that may be helpful to these new parents such as advice, a comprehensive list of “special needs friendly” doctors, and information on applying for different types of assistance.

If you would like to share your story, please send me an email at cartershope@gmail.com . Feel free to share as little or as much as you feel comfortable with, and we would love it if you included a picture. Here are just a few questions to help guide you through your writing:
When did you find out that you would be a Special Needs parent and what was your child’s diagnosis?

What is your child’s diagnosis, and what kind of special needs does he/she have?

What has your journey been like?

What do you wish you would have known at the start of your journey?

What advice would you give to a new parent in the special needs world?

What kind of assistance have you received for your child, and what was the process to receive it?

Did you ever have a doctor/therapist act like there was no hope for your child, and he/she proved them wrong?

Do you have a blog that you would like us to link to? If so, please include the address and we’ll add it to our blog roll.

I look forward to getting the ball rolling on this. I will begin posting the stories on September 15th when our hosted site will be up and running. As always thank you so much your support. I appreciate how Team Carter can keep Carter's memory alive.

Love you all!

Update

Dear Carter,

There is still a lot going on around here which has left me with little time to update. Your Daddy has been out of town for a lot of the Summer which has left me in the "single parent" role. It's difficult without him here because he is the anchor of our family. We're making do the best we can, and am glad to see his travelling come to an end.

Mikey has had a fun Summer. His birthday is this weekend, and he'll be turning the big eight! Then he starts school the very next day as a big shot second grader. He is going to be starting his swimming lessons this week, and has also started tumbling (shhhhh, don't tell anyone though because he's a little embarrassed by it even though he's having a blast with it). We've decided that with how crazy our summer has been, it's best to opt out of Fall sports this year. It will be a much needed break.

Jovie is starting Kindergarten, and she couldn't be more excited. She can't wait to be at school again. We managed to get her the same Kindergarten teacher that your brother had, so it should be a good year for little J. One thing is for sure! She is completely ready to start school again because she is b-o-r-e-d. I try to keep her busy with different activities, but she's tired of me.

Since Daddy has been out of town a lot, I've borrowed a bike so I could go on rides with your brother and sister. I'm really, REALLY enjoying it, and am kind of looking forward to taking some long rides by myself once they start school. Maybe I'll even lose some of this extra fat in the process...HA!

I know that once again I have failed to keep up with your blog, but I promise it's only because I've been working on your other projects. I love you so much my sweet little guy. I still haven't had a dream about you, but that's OK. I know that when the time is right, I will.

I figure I have somehow managed to get myself on the PTA Board which is so completely out of my comfort zone, but I am going to try to do the best I can.

Special Needs & Medically Fragile Help ...Please?

Dear Special Needs Parents,

I need help. (I just wanted to be blunt lol!)

I know that we still have a lot of you that visit our blog, and I am ever so grateful for your continued support. I feel blessed that I was able to join such an amazing community, and though our little special needs guy is no longer with us on Earth...I still feel the need to continue to be a part of it.

It's because of this that I am asking for your help on Carter's newest project. I am working on starting a new website/support group/forum to find ways to support new parents on their Special Needs/Medically Fragile journey. I know that when I first found out that we had landed in "Holland", I felt quite alone with not so much hope.

I'm just wondering if you could please either email me at teamcarterjay at gmail dot com, or leave a comment with ideas on what kind of support you wish you would have had in the beginning of your journey. Or even better, maybe support that you received that you feel helped you to realize that you CAN have HOPE while living in the world of Special Needs/Medically Fragile.

Thank you so much to each and every one of you!

Much Love and Many Prayers,
Heather

Monitors

Dear Carter,

I have been working hard on your new project, and it's coming together nicely. I think that just about the time I get this one going...it will be about time to start on your tree for the Festival Of Trees. It seems like time is moving so fast these days. I don't know if that is good or bad.

As I was reading about some of your medically fragile friends today, I realized something that I haven't thought about in awhile.

There are so SO many things that I would constantly think that I would be glad to be rid of when you were here. I couldn't wait for you to be done with the oxygen....be done with the G tube...be done with the monitors. Now that you are done with those things, but not in the way that I had hoped, I find that I really miss all of your little accessories.

I miss having to wake up several times throughout the night to the beeping of your Oximeter. Usually just because you were wide awake and you were swinging your foot from side to side. I think that you thought that game was funny. The crazy thing is that even after all of this time, I still follow that same sleep schedule. I can't fall asleep until after your night feeding would have been done, and I still wake up at your medication times. I guess my body still feels the need to take care of you.

I miss having to make the weekly phone call to get new Oxygen tanks delivered to our house. I would always feel nervous that there would be some sort of huge disaster and we wouldn't be able to get you the Oxygen you needed...having full tanks made me feel a lot more comfortable.

I miss having to check your crazy calendar before I could plan anything because you had so many doctors appointments and therapies scheduled.

I miss prepping your formula and hooking up your G Tube. Even when it would beep for absolutely no reason.

I miss mixing all of your medications.

I miss checking your hearing aid battery.

I miss practicing your sitting and rolling and eye tracking and head control and weight bearing. I miss your therapists.

I miss spending time with you at the hospital. Even though it was a terrible place to be, I miss rocking you in their rocking chairs.

As I was giving Jovie her goodnight kiss tonight she said "Carter had to have eyedrops before he went to sleep...huh?". It made me happy that she remembered that simple thing, but sad that I don't get to give you eye drops anymore. I miss that.

I guess what I'm saying is, I miss every little thing about you. I miss what it meant to be your mommy while you were here even though it was hard sometimes.

No matter how much I miss those things, I feel an intense relief in knowing that you don't need any of them anymore. I am calmed in knowing that you can move around and play free from the wires and tubes and medicines.

How amazing that must feel to you. Play free baby boy!

Days Go By

Dear Carter,

I miss you a lot today.

Things have been going OK, but there have been a few trials over the past couple of weeks which have made me think to myself that they would be so SO much easier to endure if you were here with me. There are times when your Daddy and I start to think..."really God, haven't we endured enough?". Seconds later I feel guilty for thinking that way because honestly things could be a lot worse. We really are blessed, and we KNOW that. It's just easy to act like a toddler sometimes and throw a little tantrum.

Your brother and sister have been keeping me busy. We've taken a trip to the zoo, spent a lot of time at the library, and even more time just playing in our backyard. I'm not ready for the Summer to be over, so I'm trying to savor these last three weeks. Mikey agrees with me, and would love for it to be Summer all year round. Your sister is so excited to start Kindergarten that she just can't stand it. As much as I don't want her to grow up, I'm trying hard to enjoy these moments with her because I know that it's likely to be the last time that I send a little sweetie off to the first day of "real" school.

I noticed today that it might be time to change the picture of you on our fridge. I kiss it at least a couple of times a day, and I can start to see some "wear" on your cheek. I hope that you can feel my kisses and that you know how much we love and miss you....my sweet baby boy.