Barbara of TherExtras and I have been having a discussion about whether or not I portrayed myself as a victim in my post on Stay at Home Motherhood. I’d love it if you’d read the comment thread and let me know what you think.
Remember little Natalie on Reece’s Rainbow that I talked about awhile back? Well, she has a committed family now! You can see her update here, and if you’re so inclined, toss a little money into her fund.
I had a great time at the beach last weekend with my friends. I also discovered that I am way too old to go out. After dinner on Saturday we went to this neat nightclub in Pensacola – I’d been there before several years ago for my sister’s bachelorette party. Well, I have to say that I’ve never seen so many women dressed like hookers in my life. Seriously.
Yes, I dress like a grandma and I’m proud of it!
Who’s up for another Stella pic? I know you are. And even if you aren’t, you’re getting one, anyway. 🙂 I don’t plan to use up all my snippets on Stella over the next few weeks, but I’m pleased with how her hair is coming in. Sad news, though – we trimmed her ears so she doesn’t have ponytails anymore.
I had a question about the softball story yesterday. I figured if one person was curious then others might be, as well. The Sky Rockets are currently in first place – up by 1/2 game. Yep, it’s that close.
I think of the chicken pox as being long gone by now, but the signs remain. I took a photo of Nathan’s legs yesterday while he was playing in the backyard – thought it would be cute to see his little piggies in the grass with his chunky little legs. It was, but…….you can still see the chicken pox remnants clearly.
At PT this week, Sarah Kate’s therapist mentioned Baclofen. Ugh. We did baclofen for a while before her rhizotomy, and I hoped to never have to do it again. It had to be compounded, the pharmacist never had it ready when he said he would, we had to refrigerate it, and we were warned sharply that if we forgot a dose it could cause seizures. The problem is that her hamstrings are really, really tight and she takes her knee immobilizers off during the night so they aren’t getting stretched as well as they could. We need some way to motivate her to keep them on. I’m open to suggestions…
Have a great weekend!
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First let me say that I appreciate the respectful tone of the comment thread and think it’s generally a good thing when we allow ourselves to be challenged in some way. Second, I hadn’t originally thought you made yourself out to be a victim, perhaps because I was reading my own experience into it. And yes, you clarified the “forced to stay home” comment well. It sounded like you took all circumstances into consideration, some on the hard days that you wouldn’t want or choose, and made the best decision for your family. There’s always grey in life, right? I so feel the struggle to want to go out and do more, but also the joy in knowing my being home is a huge difference. Thanks for opening this discussion and I appreciate your honest and open mind (and Barbara’s as well.)
Going out is more work than necessary! And you’re right, the women seem to be wearing less and less clothing. By the time my girls are at the bars, I’m afraid to see what the “trend” will be!
I reread your post on stay at home motherhood just now to make sure I didn’t miss something during my initial reading. Nope, you don’t sound like a victim to me. Though the following statement bugged me during both readings, “Moms like me are, in a way, forced to stay home, because we either don’t have anyone willing to care for our children, because we fear that we will endanger our children’s health by sending them to daycare, or because we won’t be able to provide them with the interventions they need to maximize their potential.” I think because it does in a way send a message that “the right” thing to do is stay home with your special needs child and the other option is endangerment. There really is another option and you through careful deliberation decided it was not the right one for you but maybe it would be the right decision for another woman to work. Hope I’m not offending you as I have a lot of respect for you.
Thanks, Janice – not offended at all, I promise. The sentence you mentioned is the same one that Barbara noted in her initial comment, and I can see how it could have been interpreted in that way. I think a lot of people see daycare as a black/white thing and my characterization probably made it sound like I think daycare is “bad” when I actually don’t feel that way. The backstory with Sarah Kate is that her health was very fragile (at least, that’s what the doctors led us to believe) and we were warned sternly and repeatedly not to expose her to anyone unnecessarily, which eliminated daycare as an option. We didn’t have any family or close friends who could keep her for me to go back to work, so we were left with no good option other than for one of us to stay home.
The bottom line is that every family’s situation is different. We actually – very briefly – considered having me go back to work and Mr. Andi staying home, because at the time I was making more money than he was and our benefits were identical. We only entertained that option for a day or two, though, because we both knew that Mr. Andi would probably go mad if he had to be home all day long with a baby. 🙂
First off, I love your blog. I’ve been following it for a few months now. I never comment, but here’s to my first comment… LOL 🙂 I have worked in the special needs community for years (since I was in 11th grade) and now I’m 32 🙂 Because of you promoting RR, I am working on convincing my hubby to adopt a child with Ds. First he said no, but now he says “when we move one day” 🙂 (we’re listing our house in a few months, so as soon as we move, I’ll be begging him again 😉
On another note, several of the residents at a group home I worked at had a “baclofen pump”. The side effects of that pump sound scary, and we had to take them to a clinic and get injections for it. I don’t know what to tell you about the baclofen because yeah, the side effects are super scary. Also, ROM helps a lot, but you probably already do that with all the PT you go to. One thing you can try, and I’ve taken 2 residents to do this, is an appointment to get botox injections in their joints. It is a bit creepy when they inject it with the needle, but it’s supposed to work pretty good. They seemed to loosen up a bit. Just another option out there.
Also, I am too a SAHM by choice. Although we do not have children with special needs yet, financially it just makes sense for me to be home. We adhere to the Dave Ramsey plan, cut back the “wants” and unnecessary extras in life, and focus on meeting one another’s “needs”. Also, with the moral training we want to instill in our children, we just cannot justify for our family to send our girls to a daycare, and pay over $1000+ a month, etc. and miss out on all the vital training opportunities we have being home and together. And like someone said above, sometimes going out isn’t worth all that work! Ugh! We live about 1/2 hour from the town where all our friends live, so it is soooo much work to pack my kiddos up, head into town, play for a short while, and feed them, and drive back home for naps. I know when they are older, we’ll do more outings, but now, I love just watching them pick dandilions and have fun as sisters. Home life can be lonely talking to toddlers all day, but that’s why during naps I check out blogs, FB, and Pinterest 😉 It’s my “me” time to connect with other mommies <3 Hang in there!
~Susan <
Welcome, Susan! I’m so glad that you’re here and that you chose to comment. I’m happy to hear that you are considering adoption through Reece’s Rainbow. Sometimes I feel a bit hypocritical for promoting it when I’m not adopting myself, but I am fairly confident that I am not called to have another child (special needs or no). I will, from time to time, continue to remind people of the need for adoptive families, as I want to make sure that those who may be called to adopt will be aware.
And I completely understand what you mean about being lonely talking to toddlers all day! Why do you think I have this blog? 😉
None of this is a recommendation – just information…
Sounds like you did oral baclofen – ? You might want to clarify with your PT if she was thinking intrathecal. I would be surprised if the other ‘b’ word had not also entered your vocabulary – botox -?
Okay this is not a reverse recommendation but I have never been impressed by the results of night splints – for anything. Can you press your PT for a non-drug method for maintaining her hamstring length? I have plans for a series of tweets relative to this problem …. sorry but it will likely be later next week.
Susan/Barbara – We’ve been down the Botox road a number of times. The last time she had it done, the hamstrings saw very little improvement. That’s the area she’s been injected the most so I think we’ve exhausted our options for hamstring Botox.
As for the pump, we won’t be doing that. I know I’m not an orthopedist, physiatrist, or PT, but she’s not affected enough for me to be willing to do that. It would be oral baclofen or nothing.
Oh I went back and left an ahem, lengthy comment…. I really want to try the seven snippets thingie when I can get my working mom butt together 🙂
I forgot to say that when Kayli was little we were really very fortunate that my husband had a flexible schedule and he could stay home with her several days per week so we really eased her into pre-school slowly over the course of a couple of years. However, that meant he did several double shifts and worked some weekends and that proved stressful in its own way.
Love ya Andi…
Feeling that decision re: the baclofen. Have I ever told you that my bestest friend has an adult daughter with CP who just spent her first year away at college? She actually went through some major surgery to re-configure her leg which was a choice the daughter made as a young adult for herself- oh such hard decisions. hugs.
I have NOT heard that story before – very good news! We have had the fortunate opportunity to know a young woman with cerebral palsy (I think she’s young, she would probably disagree, since she’s in her late 20s now…) who is very similar to Sarah Kate in terms of in what way and to what degree she is affected by CP. We knew her before she married, and now she has two young children – it’s been a blessing to me to watch her navigate adulthood in a perfectly ordinary way. 🙂