Miracles.
We’ve witnessed our share over here. My still being online falls under this heading. It took me a minute to accept this last miracle offered, but I’m glad I did.
Because I agree, The face of our Brave Hero does brighten many people’s day.
Especially mine.
We are taking Parker for an Echo and EKG today.
These appointments tend to stress me out.
Big Time.
Prayers for successful and reassuring outcomes would be appreciated.
Big Time.
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We wouldn’t need the donation button on this blog, if IÂ had a dollar for every person who has looked me in the eye and said one (or a variant of one) of the following:
“I don’t know how you do it. I know I couldn’t. You’ve given up your entire life for this child. I just don’t think I could do that.”
“God only sends kids like Parker to parents He knows can handle it.”
“I could never have your patience.”
It doesn’t matter how many times I stand up in church, or write on Facebook or on this blog about how much of a gift Parker is,
at how we often feel sorry for those who don’t get the opportunity of parenting a kid like Parker,
or how grateful we are that Parker was willing to take the chance on US being his parents,
there are still those out there that still aren’t listening.
No, it isn’t all unicorns and rainbows. Pulmonary Hypertension sucks. Those who hold to their right of free speech to use the word ‘retard’ as their go-to ‘derogatory’ adjective supremely suck.
Let’s face it, there will always be those who can’t see past the extra chromosome, or the trach, or the not quite typical of it all.
But I consider that to be their issues, not mine.
(Okay, most of the time. You can’t always take ALL of the Mother Bear out of a special needs Mama, you know?)
Last week when we were waiting in the Pedi’s office, Parker took up his usual spot in front of the gigantic aquarium to scope out all the great going ons within.
Several kids came to peek into the glass enclosed world along with the Brave Hero.
As they spotted Parker I could tell they were trying to figure out the trach. Put a name to the oxygen cord. Figure out why Parker didn’t respond when they asked his name.
I explained about the trach, and how while Parker doesn’t use his voice to communicate, he does use his hands.
Suddenly I had a Supah Star on my hands. Cause, really, how many kids do YOU know that talk with their hands?
I taught the kids how to sign ‘fish’, ‘water’, and most importantly ‘friend.’
I remember helping my oldest daughter make it through the minefields that friendships can often be. It really isn’t so different than what I was doing with Parker in the doctor’s office. Sometimes a kid needs a bridge, something in common to share with another.
My point being that raising a kid with special needs isn’t totally different from raising a typical kid.
Dealing with an extra chromosome often isn’t much harder than trying to get my two other sons to brush their teeth or change their underwear on semi-reasonable schedule.
Oh, there are the hospital stays and the financial stuff.
But these are things that could also happen to any kid.
And while I have spent a lot of time worrying about how long Parker will be with us there really isn’t aren’t any promises that any of us will live long lives.
I will concede that I never had to pack so many bags or lift a zillion pound stroller into the car each time I took my other 5 year olds places.
Then again, I’m pretty sure I won’t have to worry about Parker sloughing the major part of his senior year of high school either.
It all comes out in the wash.
Unless it is goats milk mixed with beets and olive oil. THAT, my friend, is there to stay.
So, I’m challenging you to do something daring.
Something many parents have never done before.
Take a moment and look at my family, and see them as being more like your family than different.
(But don’t look too closely at the vast mountain of laundry waiting to be sorted and done, k?)
Great post! Love all the pictures of Parker! Such a cutie!
Twitter: therextras
says:
You the best at putting out a challenge that will help the family with challenges see themselves as more alike every other family.
Thankful for the miracle.
The Love Magnet’s heart check is this Friday. The whole kit and caboodle: Echo, Ekg, exray, bloodwork, and whatever else just tickles the cardiologist (whom we love). Keeping Parker in our prayers.
I read often and am so glad you are still online and blogging. I love to read your posts because as a mom of 3 boys, I crave your insight on how to be a better mom and how to raise kids that are sensitive and aware that we are all the same and we are all different in some way. Thank you for your honesty and challenge!
Oh, and that mountain of laundry – it makes us TOTALLY the same. Not different AT ALL!
Parker steals my heart with every photo you put up of him! So glad you’re still blogging!
Tammy, if I looked at the vast mountain of laundry at your home then I would know FOR SURE that your family is way more like mine than different
! That and the fact that we were both blessed with beautiful and amazing children!
Like the others have said — it’s the laundry
I can see a t-shirt with a machine, over flowing with bubbles, clothes piled around …
My Luke’s health isn’t fragile like Parker’s. However, I’m guessing we could trade worries back and forth.
Are you kidding?! The mountain-o-laundry makes us look exactly the same! Sounds like you’re going to keep up the blog. Sure hope so. Parker rocks!
My son, Alex, and I just met you and Parker outside of the hospital today. It was nice talking to you both. I look forward to reading your blog and picking your brain for help with all things Down Syndrome. Hopefully next time we meet Alex will be big enough to give Parker a hug back!
Great post. I love your family. Thank you for sharing.
How did the tests go? always praying
Glad to see you’re still here.
I work in early intervention, and I spent a year teaching self-contained special ed before that. If I had a dollar for every time someone told me “I don’t know how you do it” or “I could never have your patience,” well lets just say I could retire tomorrow and live well.
Great post and fabulous challenge! Darling pictures!
Liam and I are so happy you are still with us and look forward to “seeing” you and your beautiful family online.
Glad you’re back!
Yay! Was so happy to see a new post!!! You sure have been given of gift of writing. You have a unique style. Speaking of gifts, I know first hand the great gift that Parker and the lessons he teaches is. Joey isn’t near as fragile in the health area as Parker is but he has been such a joy to raise the past almost 5 years. Just this morning I was letting “the enemy” get into my head with thoughts of “what am I thinking of adopting a 2 yr. old with Ds” but the “true thoughts” quickly took over and got me on the right track again. Joey has 4 older brothers and he has been the easiest to raise and love so far…that is NOT at all to put down my other kids but just to show that Ds isn’t scary and does not make our family so much different. I “secretly” think all my family and friends should have a “Joey”. Even my 18 year old said he wishes to have one of his own someday.
Thanking God for keeping Tammy/Parker online!
Glad you’re still here and online
!
I really liked what you wrote (the whole post, but espeically this part) – “at how we often feel sorry for those who don’t get the opportunity of parenting a kid like Parker,”
I couldn’t agree more! I know we feel that way with Osiyyah. People are truly missing out on the love and joy children with Down syndrome or special needs can truly bring to their life. It’s a whole different love and joy.
And I would tend to agree, especially with the mountain of laundry . . . very similar here in this family. Simply on the fact that there’s 13 people in one house
. The washing maching can run 24/7 and there still be loads of laundry!
WOW! Great post! And, I agree that “we” are actually more blessed than most, because we have gotten the privilege of caring for such special boys! I actually feel sorry for others that haven’t been so blessed sometimes! Of course, like you said, there are also the hardships that come along with this wonderful blessing!
Oh, and I won’y look at your ountain of laundry, if you promise not to look at mine!
Hugs!!!
Twitter: kdlavoie
says:
We got the laundry here, too…no worries!
Even my “could pass for typical til you get to know her kiddo” generates comments of “I don’t know how you do it” – well her and her twin two year old siblings.
We do it because we’re the mom, and once you accept that gift you wouldn’t want to give it back.
So glad you’re still writing!
I just stumbled on your blog, and so many things you wrote here struck such a chord with me. I have a son with a lot of medical issues as well, and although they’re not as extensive as yours, I still get “I couldn’t do it” or “I don’t know how you do it” often. And it makes me angry! Because you know what? They could do it, and they would do it. I’m not a super hero, I’m just a mom, struggling to do what’s best for my son. I’ll be back to read more, but he just woke up and is calling for me.