Monday, April 21, 2008

Yeah......

Have you ever met Parker? Well if not, you should stop by and say hi, because him and his mom Tammy are the most amazing family I have ever met. I love them for many reasons, Parker and Rhett share alot, they have the same cardiologist, ENT, and general surgeon, they are only a year apart, both have extra chromosomes, Parker has had a tethered spinal cord, they both have pulmonary hypertension, they both love books, and cars, and Elmo. But besides all of that, they both are loved beyond any shadow of a doubt by their families.

Recently Tammy wrote this post, this could have come exactly from my mouth, as I have been dealing with the exact same thoughts. See we both live by each other, and we both seem to be getting the same ahem....crap....from the same people.

Tammy is an inspiration to me. She is the one I call when I am freaking out about Rhett, wondering if I have broken him or not. She is the one who called me the day that Andy had his back surgery and knew I was doing everything solo, just to make sure I was okay. When Rhett coughed out his NG tube, she was the first person I thought to call, because she has been there and done that.

Have I mentioned that she is amazing? Cause she is.

I am so grateful for Tammy and her love for Parker. She has been since an inspiration, and has helped me through so much.

Tammy put it best when she said that she can't fake Parkers trach, or his G-tube, it's the same way that I can't fake Rhett's NG tube, and his oxygen. The thing is, is that although I also have thought of not blogging about Rhett anymore just because of the reasons that Tammy wrote about, I know that there are too many people out there who have just happened upon my blog, who have emailed me saying that they are dealing with the same issues, and I have gotten resources for them, and they have shared with me.

I blog for me, and for my family. I blog to show people how loved Rhett is, and that having a child with an extra chromosome is one of the most amazing things that has ever happened to us. I love Rhett just the way he is, even if he does have medical problems. It's not about attention, it's about awareness, and the love we share with other people who have a child with either the same medical condition, or with Trisomy 21.

Thank you Tammy for helping me understand my child, and for helping others who deal with the same issues that Parker has.

10 comments:

Mommy to those Special Ks said...

I'm so sorry you're getting the crap too. It sucks. Just know that we love you and we're SO thankful for this blog and your family, and most importantly, for Rhett! Hang in there!

Tami Acord-Nelson said...

Pam-
Im not sure exactly what you are trying to say, but I love reading your blog...What I also want to say is this, there are many people that I love and that love me that are truly SCARED of Thatch. My own siblings have not even come to visit him since he had his open heart surgery. It makes me sad that they are too ignorant to know how much it hurts me that they will never get to know Thatch the way they know all the other kids. I am sad for Thatch and I am sad for those who do not understand how heartbreaking it is that they dont make more effort. BUT- when you blog, those same people get to know your child, and there is some comfort in that, at least for me. I feel like we can have a conversation about how sweet his personality is even though they are never around him. And it makes me a little less angry at them. People are who they are. How Thatcher and Rett dont instantly melt their hearts? I'll never understand that. I wanted to take Rhett home with me when I met you at the hospital, I still do! The tubing all over him os such a 2 year old (any 2 year old) thing to do! BOYS! Anyway- he is a beautiful boy, and you are an incredible mother. IN-CRED-IBLE!!!! You inspire me!
Much Love,
Tami and Thatcher

Heather said...

I said it to Tammy and I will reiterate it to you. Because of you both I no longer feel alone on this journey. Because you both have unselfishly shared your sons I gather strength and inspiration. Until I found both your blogs,and our buddy Sam's, I did not even share common ground with the other wonderful families here in town with Down syndrome children because their children were fortunate to be spared major medical issues.I felt totally isolated. So we thank you beyond words for allowing us into your lives!

Love, Zoey's Mom

Kim said...

Thank you for sharing your beautiful son with us. I too am reassured by you and Tammy's strength. I am always telling people about these guys and asking for prayer. I just know God has HUGE plans the these guys and it is gonna be BIG!!!!

Peace be with you
Kim and Miss T

Chris said...

Pam, I posted over at Tammy's blog too, but feel the need to do so here also. I am so sorry that there are people out there that are so pathetic that they would doubt all that Rhett and your family are going through. How sad for them that their hearts are so hard. You and Tammy (and your families) truly inspire me. My son has Trisomy 21 and I while I love him to pieces, I still struggle with his diagnosis at times. He did have open heart surgery, but has been healthy ever since, so we are not dealing with any of the medical issues you are. I come to your blog, and it helps me keep things in perspective. I am inspired and humbled by the fierce devotion, acceptance and love you and Tammy have for your children. In their short lives, and because you share them with us, Rhett and Parker have already made their mark on this world, and what a beautiful, inspirational, important mark it has been. Thank you for blogging!

Megan said...

You guys are both amazing families, I feel really lucky to to get to know you're sweet guys through blogging.
Keep up the good work! (:

Sarah said...

I was drawn to Parker's blog because I have a young son on o2 and I wanted to know/see/whatever someone else with a little boy with a cannula. They don't have the same dx but we deal with many things that are similar. I was then drawn to your blog for the same reason.

I'm so sorry there are idiots are there that don't understand medically fragile children and what it is like. You would think they could keep there nasty opinion to themselves, but I guess they can't. I hope you continue to blog, because I would miss getting my daily Rhett fix.

Sarah

Kari said...

People blog about what's happening. Just because you have way more going on and don't have alot of time to blog about knitting and recipes your all of a sudden going to be picked on sheesh that works out good NOT! I love your blog and your family and am happy you share with the world! Keep on blogging sister your helping and advocating and geez God Forbid you receive a little support. Forget them they aren't your kind of people anyway well worth forgetting!

Marla said...

Wow. People can be really really ignorant. Never in a million years would I even think such weird things. Why do people do that?

Leslie said...

I can't tell if my last try posted. I just wanted to encourage you to keep posting. I don't know why some people can't keep their comments to themselves! I know I've dealt with that some too - and also wondered if I should stop being so vulnerable. I think it does help though for other walking the same journey - to be encouraged and to learn from someone else. Thank you!

Hugs and prayers to you all!
Leslie
www.homeschoolblogger.com/LeslieNelsen