Samsmom: Life, Joy, Loss and Loving your Mitochondria

Growing Pains

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I was at a craft store on Saturday with Samantha. I have signed up for my second sewing class because I refused to be so intimidated by an appliance.

I am very intimidated by my sewing machine.

I had Samantha bundled up in her BOB stroller, the canopy was over her head so all you could see was her cute little feet.

Two little girls behind me are arguing…..”Look at the baby.”

“That’s not a baby, she’s too big to be a baby.”

“Well then why is she in a stroller?”

“I don’t know. Mom? Why is the little girl in a stroller?” (Mom ignores the question)

“She’s not a little girl, she’s a baby!”

“Is not.”

“Is too.”

“Mooooommmmmm, ask that Lady if her baby is a baby or not.”

Oh good Lord. All this just to learn how to run my Singer. I really don’t think it’s worth it. I look back at the mom and give her my Really??? look.

She doesn’t seem to notice because she was on the phone. So I did my best to ignore them all. Other times I might turn and explain to the kids that Samantha is in her stroller because she can’t walk, etc, etc. But some days I just don’t want to explain our situation. Today was one of those days.

I have slowly been coming to terms that we need to get certain things for Samantha as she becomes older. We now have nursing care two days a week, we are looking into moving into a house where Samantha’s room can be on the first floor…

All because she is getting bigger.

And I am looking into a wheelchair. We have a ‘seating system’ for Samantha at school so she can sit with her peers. I keep it at school because it’s big, bulky and just doesn’t work for quick trips into the craft store.

I love our BOB. It folds up, it’s light. I can plop Samantha in there and she can wiggle until her hearts content. AND it has a weight limit of 60 pounds!!!

I probably couldn’t justify putting a 60 pound Samantha in the BOB. She’s 30 pounds now and it seems to strike a debate at the craft store.

After our stroller encounter, I met a group of friends at a 6-year olds’ birthday party.

“We need to get Samantha a wheelchair.” I said

“Oooohhhhh, I’m sorry, ” said a friend. She then frowned and caught herself. “Why did I just react like that?”

I laughed at her honesty. “Probably because I feel the same way.”

Not that it’s bad. Not that we don’t need it; we do. But that our life is moving into another space. A space that is a little more complicated. A space that means I can’t plan appointments too close to each other because I will need a little more time…time to load and unload a bigger Samantha. Who is, by the way, not a baby

It means we might have to buy a minivan. It means I will become a mom, minivan driver.

Crap.

So, the wheels are in motion. We have contacted our durable medical equipment company for a wheelchair for Samantha. It should take about six months for approval and delivery.

By then I’ll probably have my head wrapped around the idea.

10 responses to “Growing Pains”

  1. Deana Avatar
    Deana

    We still have 6 year old…52 pound Max in a jogger stroller. Albeit a special tomato special needs jogging stroller. Because it is easier…and we can cocoon him away from snotty nosed little kids that would sneeze on him (totally irrational fear of mine)…and he's more comfortable in it. He likes to kick back and enjoy the ride. His wheelchair is mostly upright, only gives a bit of recline without him feeling like he's falling backwards. And Max kicks, A LOT! So those metal foot plates are hard on the backs of his ankles. And it's heavy…like I can hardly lift it in the car by myself heavy. And we need a bigger car as well…but for Max, a minivan isn't going to cut it. So we're looking at full-sized vans. Like Dodge Sprinters…they are BEASTS! I don't really know why I'm going off on all of this in your comments, other than to say, I get it…and it's all on my mind right now too. And those “baby” comments from other kids still hurt. Not that the kids are being hurtful, or that the parents should automatically be all Sesame Street grown-up about it and explain that we all have differences that make us unique. I totally get just wanting to sign up for your sewing class without it being a public service moment. Enough of my rambling…off to bed. Looking forward to seeing you next week!

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  2. ferfischer Avatar
    ferfischer

    We just got our seating system, and Cici is still really small, but I get totally different looks when I have her in that versus our adaptive stroller! But I know the exact discussion you talk about here – it happens to us all the time – usually for us, followed up by the “twin” comments that I love so much. And, I already have a minivan, something I have already come to terms with when I had 3 kids under 2 years old (along with the giant strollers that you need for twins), but when Deana says they need a normal sized van, I shudder, because what in the heck will WE need? And my kids is only 2!Honestly, I'm not sure what I prefer now, the looks of pity when I have the adaptive stroller, or the 'baby' comments and discussion when I have the other stroller.*sigh* I get it too!

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  3. Amanda Avatar
    Amanda

    You will adjust, accept and move forward wondering why you didn't make the decision earlier. I'm not sure if you remember my blog about birthday cakes at Sam's Club or not…some parents just SUCK.

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  4. WELCOME! Avatar
    WELCOME!

    We got a wheelchair for my 24 pound 2 yr old last year. My husband hates it. I can't believe it but I love it. Yes it's heavy and yes you can't pass off your child being a baby anymore, but I strut behind it! I tell my husband it makes me proud and he shutters. Hell yes I'm proud. We are figuring out how to make this life we've been given work. We've adapted and I'm so proud of all of us!!!

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  5. HeatherS Avatar
    HeatherS

    Ladies you are fabulous. Let me say once again, how relieved I am that you are on this journey with me 🙂 Deana, Samantha kicks too. Her feet get caught behind the footplate, which hurts. I also like that I can cocoon her away. We live in the house of Purell…I keep telling my husband we should buy stock in the company. Jenny, perhaps we should buy a bus and we can all exchange it when we have appointments. Big vehicles scare me. My husband has a big truck and I have NEVER driven it. Maybe we need to get a bus driver too 🙂 Amanda I re-read your birthday cake post. I had forgotten about that. Good Lord, what a bunch of punks. Perhaps we should hire an intervention specialist along with the bus…and the driver. Love you all 🙂

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  6. Deana Avatar
    Deana

    Heather, What chair are you looking at for Sam? Max has had a couple through the years. A special Tomato Multi-Seating device (carseat, wheelchair, feeding seat, airplane accepted seat all in one) A special tomato jogger (which he is just too big for now, but we keep taking him around in it. They don't make a bigger size, but babyjogger does…but they are HUGE!)A WIKE- special needs bicycle trailer/stroller. This is also huge, but is great for actually getting out with him.A KidKart- I really liked this one, but he would get out of it by wiggling and kicking out of the constraints…which made us get the special tomato.and now- A Quickie Zippie…he sits really good in this, but the foot plates and metal frame really hurts when he kicks. I don't know how to remedy that. And I really don't like how “exposed” he is. (The house of Purell…consider this the House of Purell…and Lysol wipes…and shoes off at the door…and clothes off in the garage when we come back from the hospital!)As for the van…I WISH we didn't have to get one. In fact, we've been putting it off for way too long. Max sits with his feet propped up on either side of my head-rest, with his seat as far back as it goes! We need to put a bench type seat in the van to change his diaper, because I don't want to have to change his diaper on the bathroom floor. We will put a small hoyer lift in the van to move him from his chair to bench for those diaper changes. And for travel, it will be more comfortable for him, and us to have the little extra room. He's really big now…almost as tall as his 11 1/2 year old sister! And there are no signs of him slowing down! I don't want to drive the van, but I'll learn…just like everything else with Max. I hate big vehicles. And believe me…we will be getting the smallest vehicle we can for our running around without Max!

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  7. George Avatar
    George

    I have a great friend named Caroline who has a son now in his teens.She's been through all of this, shopping for first wheel chairs, mini vans, seating at home, nurses, you name it and she's gone through it.I'm sure you already have other resources, but I think the two of you would hit it off — maybe you can make a fried, get advice, drink some wine :-)Lemme know if you want her info.~ George

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  8. Maria Avatar
    Maria

    Hey Heather,Welcome to the club of wheel chairs! I remember calling Jacob's kid cart a “stroller” for the longest time rather than a wheel chair until Sarah told me that mom “why do you call it a stroller when it's a wheel chair?” I realized then that I had to go with the flow…Sarah loves Jacob's hospital bed and our stair lift is the “coolest” thing around her friends.We're on to our 2nd wheel chair (waiting since August…), so it's good to start a bit before Sam really needs it!I love the idea of us having a bus for all of us!Good night, Maria.

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  9. Anonymous Avatar
    Anonymous

    Heather,We are right there with you with every turn of the wheel. There are cool friends in the Wheel World. From the last comments posted you already know that!! Love you, Christy Jo and Fam

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  10. Shauna Quintero Avatar
    Shauna Quintero

    Right there, right now. I call it a special stroller or his “new chair.” I can't say wheelchair yet. And if I do, I feel the need to explain it – “It's a stroller that functions like a wheelchair!” I understand.

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Hello,

I’m Heather

Welcome to Samsmom and over 15 years of stories about love, loss, grief and the process of moving forward. It’s not always pretty here, but it’s honest. I’m a writer, a fund raiser, rare disease advocate, Mom of two Littles who are no longer here, Wife of Hubs, Aunt to the Phews, daughter, friend and unapologetically me.

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