There are parents of kids out there that look at me and decide that I must be some sort of fraudulent imitation of a real special needs parent.
Cause, I don’t view Parker’s life as being as devastating as I should.
Yeah. They view me as being suspect because I’m not as angry as they are.
What can I say?
On this blog I try to show that Parker is really more like a typical kid than he is different.
And that there is life, (a really, really, really good life) after special needs.
But sometimes, it is hard.
Right Heart Caths have taken years off of my life. I’m a total nut case before and looong after.
I’m not sure our finances will ever be the same.
My Dial of Worry is always set to sky high.
I often look at bloggers who travel to all sorts of incredible venues where they are then able to meet other bloggers and learn from each other.
I wasn’t even able to meet my commitment to speak at a conference held here in Utah.
Parker’s health was shaky (remember The Great Tobi Race?) and I barely had what it took to tend to Parker’s needs and shower daily, how was I actually going to be able to stand in front of other bloggers and be coherent?
Once upon a time my life plan included me with my name appearing at the top of a master’s degree.
I had a friend that was sure I would one day be famous.
I’d settle for having the time to volunteer more often. Spend more time trying to make a difference.
I miss teaching. I not only love it, I’m good at it.
And while I know, deep in my heart, that being at home with Parker is the right thing for me,
sometimes it’s hard.
I hear ya Tammy! a wonderful post as usual! I make an effort to make our life look easy for everyone around us including my husband. yes, this life is hard and I would like to find a life for me that allows me to be with Noah too, he is my life!
Just wanted you to know…even though you don’t need my approval…I believe you! I also agree that you are best serving with your son and your family. I agree that someday…maybe not as soon as you would like…you will have your name on a Masters Degree! I also believe that you are famous! You have made Parker a celebrity. He has so many people praying for him and I believe that God has used you and Parker for his will of the rest of us to know that miracles happen! I believe you are teaching…maybe not in a “traditional” school room…You are teaching us about faith, love, perseverence, compassion, and strength. I don’t know if you remember but I tried to get something going to help Parker with a piece of machinery he needed. I wasn’t able to help and felt really bad that I couldn’t help, but I do pray for your family and speak of him for others to pray and learn as well. Parker IS more typical because of YOU!
You may have seen a different path but God knows more…as you know ; ) You are where you are supposed to be. You only need to answer and listen to GOD not others thqt are not in “the know” of His Plan…
Just my 2cents…But I know I have learned from you and though I have’t heard you speak in person but I have heard your heart speak and it has been clear. You are not a fraud you are a MOM and a MOST EXCELLENT ONE AT THAT!!!!!!!
Hugs to you and your family
Kim
Kim,
Thank you. You made my heart sing this morning.
Through your blog, through you sharing your heart you are a most Amazing Teacher. You are touching many lives through your words…a very special teacher in so many ways.
Thank you for teaching by example and words.
with Hope,
~ Chris A ~
Chris,
Thank you!
Last summer I was teaching within my church’s Relief Society program. But even being able to do that was proving to be too stressful with Parker’s health.
So, now I’m the ward gardening expert.
HUGS!!!
Twitter: MommaHopeful
Jun 8, 10
Yep.
You’re totally a fraud Tammy (kidding…totally kidding). I wonder too…sometimes I read other SN parents who say they’re going to conferences and the like…and I wonder how…truly, HOW?
it is hard. And I’m sending you a big hug and a SMOOCH.
Heather, I’ve got to tread lightly on this one…..
but man, I hear ya!
I’m at a point in my blogging experience where I actually have an offer here and there of sponsorship to various conferences. And I have to turn them down.
Last year I was petitioning for them, but this year there’s simply no way.
Even on days with a nurse here I’m the one who follows Parker’s heart rate…a HUGE indicator of potential sickness, I’m the one who creates the blenderized diet, I’m the one making the reorders, doing the homeschooling and keeping an eye on all the little things that keep our Brave Hero going.
I can’t even imagine trying to get that Tobi for Parker if I had been at a conference.
Reed is an amazing and very hands on Father, but he works all days.
I’ve got to be the one here physically holding down the fort.
The one plan I am going to hold on to, is the plan to take some sign language classes at UVU.
And to be truly honest? I wouldn’t trade this kid (or any of my others for that matter) for anything. I LOVE being with him and consider myself so very blessed.
But sometimes it is hard.
Twitter: MommaHopeful
Jun 9, 10
Tammy,
I hear you. Sebi is great as a dad too, but again, he works, and someone has to be with the kids! 😉 And I LOVE being here. I really, really do.
We should just hang out together. IT would be so much fun! 😉
If only Utah and Georgia were border states.
Twitter: kadiera
Jun 8, 10
You *are* famous. And you *are teaching people – just not the people you expected
The thing I’ve learned about degrees in the 10 years since I dropped out of grad school: They’re worth the paper they’re printed on, and not a whole lot more. It’s more important to learn and do the things that matter than to prove you could sit through hundreds of hours of what someone else thinks is important.
Sometimes it’s hard – so simply said and yet so true. And that is all you have to say. My children’s needs are not as time-consuming as your precious son’s, but I know only I (and my husband) know our daughters well enough to know when something’s wrong, something’s off, something’s just not right. I have written out instructions for when our daughter has seizures, and then this weekend she had one unlike previous times – how would others recognize that and know what to do? I know too that being here for our daughters right now is where I am supposed to be, but still…. it really is okay, but it is also hard.
There are those of us who have traveled through grief, depression, denial, anger, and acceptance and those who are still going through the process at different paces. What we can do is connect with each other for support. Because we all feel the same emotions, even if in different degrees.
Know that there are those of us who care and know how hard it is. Just because it is. ((Hugs))
I hear you, too! My life with Nik looks SO different than I ever imagined it would and I LOVE my family. But, yes, dammit, it IS hard sometimes.
And those angry parents? They’re missing the beauty of the journey for focusing on the pebble in their shoe.
Hugs.
In my past life I was a special ed teacher. In my current life, I’m the mother of three boys- one of whom has DS, among other things
I hear you girl! I, like you, aren’t angry. Just busy and overwhelmed. I too long for people to see the worth of my son’s soul, to love him as we do. And I say to you- keep writing. We all need you!
You have taught me many things through your blog. How to be a better mother, teacher to my son and how to persevere even in the face of great difficulty. My whole family loves your blog and asks me daily “How is Parker?” You have given me many great ideas for working with and teaching my youngest son Liam who has Down Syndrome and Autism . Most importantly you have taught me that there are just some days that it’s okay to say “its just hard sometimes” because it truly is. For this I thank you and your beautiful family.
Thank you for sharing your thoughts. You continue to teach all of us who read about you and Parker. Thinking of you!
Loved this post. I get the complicated med schedule, hovering , even teaching your child.. ( we did asl instruction in home) but t the end of the day, we are parents first. We must celebrate the every day, the uniqueness and success if our children. We must also lead by positive example. And all of this, like other moms, will prepare our kids for life and adversity. I want my children to succeed at living, at laughing, and at loving!
You are still a teacher – to many people who read your words and learn from your experiences.
I’m sorry your having such a rough time lately are feeling discouraged. It would have been nice to meet you at CBC, but you are doing a wonderful job right where you are.
Twitter: therextras
Jun 9, 10
Hard, yes, but not as hard (as in firm) as your resolve to care for, teach and grow that little boy. I do not read real regret in your words about what might have been – you do well in stating your resolve via ‘it’s hard’.
Barbara,
I have absolutely not one teeny tiny piece of regret, I just wish I could manage it all and fit in all in better.
Twitter: marriedlife
Jun 11, 10
You already are famous! 😉
And lately I’ve had a couple friends convince me to try swagbucks… but I keep thinking if I’m going to do that I need to sign up under you… so tell me how? 😉