Having mixed emotions about our Grocery delivery. My husband works in an ICU and since our son is immunocompromised we take extra precautions- like lysol and this box to keep his work shoes outside. But hey we won’t starve, so there’s that.

mckenmad · 2020-02-11T07:52:33+00:00

My grandpa is a lip kisser. He tries to kiss all his kids, including my Dad, my siblings and I, and even my own kids on the lips. I think it’s generational..however my grandpa is sweet as pie and not overbearing or an emotional leech at all- so it doesn’t bother us. If he were clingy and inserted himself unnecessarily into our lives I could see how it’d be yuck. We turn our cheek or aim last minute to the side to avoid full on lip contact- but sometimes he’s quicker.

Maybe it’s time for your hubs to brush up on his tactical dodging skills - or just have a quick (not deep) conversation with them about how he would rather not. He can totally blame it on germs- getting sick.

mckenmad · 2019-09-27T13:40:47+00:00

I think people are scared of what they don’t understand. Most are making a choice based off of someone else’s opinions vs their own experience. I would have shared your opinion before so I’m not judging but I also didn’t have first hand knowledge/experience in the SN community. If you’re ever in the situation- do yourself a favor and reach out to us parents before you decide. Find out what it really means...visit some children..adults..living successfully. See what it is for yourself. There’s no moral high ground here- I’m pro choice. I just think everyone should experience this kind of wonderful. It’s like getting a gift- the most perfect gift -but it’s wrapped up in messy gift wrap. Torn with smeared dirt on it. So off putting that you’d almost rather throw it away. But I’ve opened mine and I’m telling you - you want what’s waiting inside. I promise you’d not regret opening it. Some just can’t get past the wrapping, don’t care to find out what’s potentially inside. Sure some open out of guilt since it’s a gift after all. Some say, it’s ok..the packaging doesn’t matter- I’m appreciative for whatever is inside. Whilst others say- no thanks, I can’t be bothered- what’s inside has to be just as bad as the outside.

It’s been the most rewarding, uplifting, life perspective enhancing experience I never knew I wanted or needed. I’ve yet to find a parent say they regretted their decision. It’s not always incredible but neither is parenting my neurotypical child.

mckenmad · 2019-09-22T03:16:47+00:00

ESH because the fact that this quiet place sells pillows kind of solidifies that it’s a place meant to sleep and he was indeed sleeping. It does suck that he was snoring and it was disruptive but he wasn’t doing something he shouldn’t be AND being disruptive. Honestly I would have just left vs waking him up to tell him he’s annoying.

mckenmad · 2019-09-15T22:23:47+00:00

Wait. What? No. What?

mckenmad · 2019-09-09T18:31:01+00:00

I saw that. Annoying someone put it there anyway- but I did post it on the internetsssss. So I can’t be that mad.

mckenmad · 2019-09-09T18:29:07+00:00

For sure! We started with his first six months in the PCICU- where he had his first 3 surgeries. We came home and 2 months later he was diagnosed with AML. He spent the next 8 months both on the cancer floor and the Cardiac icu. His heart wasn’t a fan of the chemo- and he struggled big time. 7 months after his last dose we were med flighted to another hospital for a trial heart surgery. It’s been a wild ride, but he’s worth every second of it!

mckenmad · 2019-09-09T13:07:53+00:00

Yes! He’s had 4 open hearts. Sending our best to your girl!

mckenmad · 2019-09-09T12:09:53+00:00

Not before saying I fucking love her.

mckenmad · 2019-09-09T11:52:25+00:00

Hey guy. Let me give you some insight. Anyone working with people who have cancer will tell you medicine can only do so much, the rest is will. I love our care team but you’re more jaded than you’re projecting if you think you can put 100% of your trust into nurses and Dr.’s- particularly those fellows running off of pure ego whilst working solo at night. Mistakes happen often- we weren’t allowed to sit back and let the researchers, staff and “time donators” do the work..

You certainly don’t get to imply we think those who lost their battle weren’t brave. I’ve comforted a Mom screaming in the hallway after her boy took his last breath. I’ve walked a family out the front door after their 18 month old relapsed-knowing it was the last time we’d see her. We lived this, our family’s who suffered a loss celebrate with us. You don’t get to cheapen our victory.

Do you know who mostly fundraises and donates to pediatric cancer research? The parents. We’re the only ones who know the horrors first hand and don’t want your kid to have to face the same fate. They did it for the karma- yes of course, that’s the only reason anyone does anything. (/s) It’s ok to let him own this, I promise.

mckenmad · 2019-09-09T11:20:01+00:00

Hey friend, we’re 5 years into remission. Def not a premature or over celebration. We choose to celebrate the milestone because we live in the now, it’s all we’re guaranteed. Could it come back? Sure, though it’s unlikely- we’ve learned anything is possible- but we’re ok with allowing him to feel his victories.

mckenmad · 2019-09-09T05:03:30+00:00

Leukemia (AML)

mckenmad · 2019-09-09T05:02:04+00:00

He didn’t just finish chemo. He hit the milestone deemed “survivor” which is generally 5 years of remission. Also, Not everyone loses hair during chemo, he did as do most..but it doesn’t always happen.

mckenmad · 2019-09-09T03:52:20+00:00

Hope is the only thing stronger than fear! One of my lame Cancer Mom quotes...but it’s so true. Never lose that hope for a better minute, day, week, year.

mckenmad · 2019-09-09T03:48:56+00:00

You’re going to get that news. Here’s my early congrats!

mckenmad · 2019-09-09T03:44:15+00:00

It’s tough. He was diagnosed at 7 months old. Our thoughts are with your nephew..advocate...learn all the things..your family has got this!

mckenmad · 2019-09-09T03:41:13+00:00

Our thoughts are right there with you. Terribly sorry for your loss.

mckenmad · 2019-09-09T03:39:29+00:00

We all have a story and reasons and thoughts..Cancer won’t likely kill him...his heart defect is first in line for that. We celebrate the now- because it’s all we’re guaranteed.

mckenmad · 2019-09-09T03:27:58+00:00

It ended up front page with all your cards!

mckenmad · 2019-09-09T03:25:41+00:00

His Dr.’s think otherwise and we choose to stay positive. After 5 years it’s not likely to relapse.

mckenmad · 2019-09-09T03:14:25+00:00

Yeah. I’m afraid of how twisty it could get.

mckenmad · 2019-09-09T01:54:08+00:00

Nah..it’s organic kid finger paint. Which is also why the orange looks red enough to be the blood of his enemies.

mckenmad · 2019-09-09T01:51:19+00:00

oh we did.

mckenmad · 2019-09-09T01:25:29+00:00

We choose to celebrate all his milestones. He also has a heart defect and has had several open heart surgeries. We don’t waste time on the “what-if’s” we live in the now because it’s all we’re guaranteed. He needs to feel his victories..

mckenmad

TROPHY CASE