I was checking out my “site stats” this morning–it’s always so weird to me that people actually READ my blog (and some even FOLLOW ME?!) and I looked at the search terms that people used to find me. Most still revolve around some form of Hershey Feeding Clinic. I’m happy about that, because we had such a wonderful experience there. But something that saddened me was the following search:
“scared about being mom to baby with special needs”
Oh, Honey! I’ve been there. I AM there sometimes! Feeling so inadequate to meet the needs of someone special. Feeling like a complete and utter failure. Feeling scared that I won’t be able to “rise to the challenge” of what my child needs. Scared of the sometimes-icky things that one with a special needs baby needs to deal with (infant colostomy, anyone? g-tubes anyone? eye-care after surgery anyone?)
You are NOT ALONE. Not one little bit. Most moms of special needs kids that I know have two needs–to find someone to talk to about their experiences and find camaraderie, and to feel like they can give back–make the fact that their child has “issues” (whatever they may be) MEAN something. That it’s not just me in the trenches every day for no reason.
Let me tell you, the day I found another mom whose son was blind AND autistic I was almost crying with relief. Literally. I wasn’t alone. I knew moms of blind kids. I knew moms of autistic kids. But oh, the combination of the two! AND her kid was a couple of years older, so she understood where I was. She could illuminate the path ahead a bit. A BIT.
So, Scared Mom, please Google (or Bing or Yahoo, whatever) your child’s special needs and the words “support” or “blog”. We are out there. We would LOVE to talk. It’s still going to be scary. Not having a healthy child is often scary. But you are not alone.
And for those of you considering Hershey Feeding Clinic–DO IT. It’s amazing, life changing and WORTH IT.
Apparently if you google Hershey Feeding Clinic, I am the fourth entry. Maybe this will move me up a bit. 😀
For anyone who wants to know, we LOVED it there and highly recommend it. We did two stints, with the idea that we might have to go back again. Our first stay was a month in 2008, where they got our son off a feeding tube by teaching him how to drink enough PediaSure to keep his calories up. Our second visit was a few weeks in 2010, where they taught him how to chew. The staff there is EXCELLENT and if you want more information I am very willing to discuss it with you by email or phone. Just leave a comment and we can chat.
I just looked at my last post’s date and it was 8 days ago. In blogland that’s like three months and people have now forgotten me and don’t even bother to check their reader for me anymore.
I’m sorry! It’s SUMMER!
But that, dear friends, is coming to an end. Oh, ok, let’s be specific. Summer lasts for, what, 6 more weeks. Summer vacation, however, has two weeks left. Which means I’ve survived nine whole weeks of it. And still have four children. That’s pretty good in my book!
Ethan and I start Hershey in three days. I’m being “cautiously optimistic”, meaning I would LOVE to have him come home eating and chewing and all that, but am afraid to get my hopes up.
I’ve had two days in a row of playdates with good friends and their kids. It’s been GREAT having grown women to talk to while my kids have a great time playing.
Tomorrow I go shoe shopping with the kids. Highs and lows, people. Highs and lows!
We’re making the most of homemade popcorn lately–a little oil in a really big pot, some popcorn kernels and POP! YUM! I like mine either with salt or with salt and a little sugar (try it before you knock it!). The kids love it and it’s so easy and cheap! SO MUCH CHEAPER than microwave stuff and you know what’s in it.
I’ll be doing only quick drive-by posts if any at all the next two weeks. If nothing else, I promise a full in-depth recap of our adventure.
Happy Chewing, everyone!
Hershey emailed this morning and gave me the date that Ethan will start at the feeding clinic–August 16th. We’ll have five days that week and four the next (missing Friday due to the triplet’s 9yr check up).
I’m happy to have a date, finally, but starting to get a tiny bit overwhelmed at school starting in five weeks and being gone pretty much all of the two right before it starts. I’m opting to try and drive up and back each day instead of staying at the Ronald McDonald house. I just don’t want to be away that long–10 hours is enough each day, thankyouverymuch.
In construction news, we painted and put flooring down in the mud and laundry rooms. They look very nice, but still need trim and doors and appliances (from the basement). The guys are working on the east wall today–windows and siding. The insulation got blown into the ceiling of the garage. Things are starting to get finished. It’s WONDERFUL!
Ethan was at the Hershey feeding clinic yesterday, showing Dr. Williams what he had done in the past five weeks (baby chewing, but that’s it). Dr. Williams tried to have him chew some pancake pieces. Ethan would put them in his mouth and promptly swallow them whole.
Dr. Williams “Buddy, don’t swallow them whole.”
Ethan “Can I swallow them half?”
Jim has a stomach thing and my allergies are really acting up, so we both stayed home from church. That’s actually a Very Big Deal for us, being that we comprise the leadership of both worship teams. I can’t wait to hear what the elders chose to do for worship time.
Having a fairly eventful week here:
Monday is lunch with my mother and sister (which I don’t get to do nearly enough).
Tuesday Ethan and I are trekking up to the Hershey feeding clinic to see what’s in store for him. Tuesday evening the appraiser is coming over to figure out an amount that she thinks our home is worth and then give it to our new mortgage company. We’re hoping it’s the same amount our realtor thought, because if it’s less they won’t give us all the money we want. That would be BAD.
Wednesday and Friday I’m working
Thursday is a dentist appt and I’m really hoping for no cavities.
Saturday we’re having a get together here with two other families that each have four children. 18 people in all. All the adults like each other and get along and have a wonderful time together. We started doing this last summer and are trying to make it a semi-regular thing. Fellowship ROCKS.
In between all the above I’ll be cleaning and doing laundry etc. Especially cleaning! Having people over is GREAT incentive!
Friday evening, without a lot of fanfare, but with MUCH explaining to him, we removed Ethan’s g-tube. He’s had it since he was 9 months old and obviously doesn’t remember anything else. He was quite sad about losing it. He wanted it back in. He cried. He spent literally the next 24 hours on the floor (or bed) lying on his stomach unless we made him sit up and come to the table for food.
But then–THEN–Saturday evening he bounced back. He jumped on the trampoline. He played. He sang. He was himself again. He still said he was sad about it, but whatever it was that made him want to lay down was gone.
And now we are at Wednesday. He still has the gauze and tape over the hole. I could probably take it off but I’m a little freaked out by it. I’ve only seen Laura’s “healed for years” scar. Ethan’s doesn’t look anything like that. So I think I’ll probably wait until Friday and then take the tape off.
Free at last, free at last, thank GOD Almighty, he is free at last!
Ethan tried “real” food today–waffles, french toast, pancakes, hot dogs, french fries….and liked everything. Whew! With only 7 days left here (man, the time is FLYING), I’m thrilled that he’s moving forward with things that we actually eat in our house.
Less than two days until Jim and the kids come up for a visit to both the clinic and Hershey Park. I’m SO looking forward to having them here. And then it’s just a few more days and we’re home for good and I’ve got to figure out how to be a stay at home mom again! 😛
And post on this blog again regularly!
This was an incredibly great week with Ethan up at Hershey. He worked very hard and everyone is thrilled with how he’s doing. We’re home this evening, Saturday and head back up on Sunday afternoon. Jim and the kids will come up next weekend and we’ll all go to Hershey Park (with just Jim and me!)
He and I are getting along very well so far this weekend–I think both of us are making more of an attempt and he’s not sick. That helps! 😀
Sorry for such a short post….I promise to return to my regularly scheduled blog posting as of July 26th…until then, please feel free to check out our progress at http://www.carepages.com
Hugs and Kisses!
Yeah, I know, the last post’s title had the word Long in it as well. So I’m not feeling creative right now. I’m tired. I want a good night’s sleep in my own bed, without a child nearby just lying in wait to start talking at 1:25 AM. Yes. you read that right.
I’m off to order some food. No, I haven’t cooked since Friday (Thursday?) of last week, but certainly have no desire to do it now, either.
On the way home from Hershey, it occurred to me that as much as I want a break, so does Jim. That’s why two-parent homes work so much better than single parent homes. You actually get a break. I need to find a babysitter up there. Seriously. Just one or two hours would be HEAVENLY. I figure, between bathroom breaks and when he wanders off while I’m eating and he’s not, I probably am in his presence for about 22 hours each day. Man, that’s a long time. I love my son, but whew. I’m glad I’m 1/4 the way through this little experiment!