Wednesday, July 13, 2011
Saturday, July 2, 2011
Sunday, June 19, 2011
Friday, June 17, 2011
Tuesday, June 7, 2011
I stumbled upon this from Bringing The Sunshine and really thought it was worth a repost! It puts into words how I feel.
Set Apart: A Primer for The Typical Folks
Unless you had the benefit of growing up with a disabled friend or family member, I bet you can relate to this scenario: you spot someone in a wheelchair, using a walker, missing a limb, or (fill in the blank). You want to be nice, so you try to make sure that you don’t give the impression that you’re staring (which often means you look away), and then you are, of course, mortified when your child points and says “What’s wrong with her?!?” You turn red from embarrassment, panicking because you don’t know what to do now, then shush your kid and give them an impromptu lesson in politeness that they almost certainly don’t understand because they didn’t think they were being rude – they were just curious. Can you relate?
Both of my children are “differently-abled.” My daughter, Sarah Kate, has cerebral palsy. Although she’s made great progress over the years, she still has a distinctive gait that isn’t “normal”. My son, Nathan, has Down syndrome. Although he has yet to miss any developmental milestones, his distinctive facial features announce to the world that he is also different. We’ve encountered a broad range of reactions from people over the years, but the scenario I described above is pretty common.
So if you’re in that situation, what should you do?
I can’t speak for all parents with special kids, but I always like it when people ask questions. It gives me a chance to advocate for my child, and educate kids on disabilities. So if you’re ever around my differently-abled kids (or others), I want you to remember something: You don’t need to feel awkward. Feel free to ask questions about my children’s conditions and the progress they’re making. If you know us, invite us to do things – we’ll let you know if we can’t. Don’t worry that you have to figure out all the details for us – we know the drill.
And while we’re on the subject, don’t look away when you see someone who is “differently-abled.” Instead, look us right in the eye and flash us a big smile. Many people don’t take the time to look at our children and see the person instead of the diagnosis. And that goes for us moms, too – people try not to look at us, either, which means that we often feel invisible, and are often lonely to boot.
Don’t look away. Smile. Ask questions.
But that’s the easy stuff. Now I want to dig a little deeper.
From my experience, and from talking with other parents of children with special needs, there are a few other things that a lot of people do and say that we aren’t so fond of. Actually, some of these we hate. Really hate. I’ve prepared a list for you of the Top 5 things I’d rather not hear.
1. “God only gives special children to special people. You must be really special.”
That’s really nice, and I appreciate the sentiment, but… What exactly makes me more special than another parent? I’m kinda lazy. I swear. Often. I avoid my daughter’s school field trips like the plague. Room mom? Never!
Everybody loves a compliment, but the truth is that I’m not special and I’m not amazing. I’m just a mom. If there is anything at all about me that is special, it’s because I was given special kids, not the other way around.
2. “You are so much stronger than me. I don’t know how you do it. I couldn’t handle it.”
Again, I realize it’s spoken with the best of intentions, but let me let you in on a little secret: when it comes to your babies, whatever it is, you handle it. The only other option is to crawl into the fetal position and pretend it’s not happening. But you can’t live that way, so you will have to eventually get up off the floor and face it, because your babies are counting on you.
3. “I’m so sorry”, or worse, The Pity Stare
Let me let you in on another secret: A lot of us special mommas actually feel sorry for parents of typical kids because they miss out on being a part of our community. When your kids achieve things, it’s not really a big deal (after that first kid, anyway). Everything’s a big deal in our house!
Yes, there are times that our life is tough. Yes, there are times we wish we were like you. But just because we have this Thing – this highly visible challenge – doesn’t mean that our lives are sad or tragic, and or that our children’s lives are sad or tragic.
The thing is, no one is perfect – we all have flaws. Throughout life, we each choose how much we will reveal our flaws to those around us. People with disabilities have awesome strengths. The main difference is that they can’t hide their weaknesses like the rest of us.
4. Critical statements about our parenting choices (includes dirty looks)
Sadly, there are a lot of less-than-stellar parents in the world. But before you make a really loud comment while standing in the line for the Pirates of the Caribbean ride about how strollers aren’t allowed, stop to think that maybe that stroller is being used as a wheelchair for a little girl who doesn’t have the stamina to stand in line for 45 minutes to see Jack Sparrow.
Occasionally, we do benefit from our specialness. But much more often, we are like salmon swimming upstream. Please don’t begrudge us the opportunity to do things that typical families do, and cut us some slack if every once in a blue moon we actually have it a touch easier than you do.
5. “That’s so retarded!” or “What a retard!”
I’m sure that many people who use the r-word probably don’t ever consider how what they are saying affects people with intellectual disabilities, their families, and friends – I get that. When questioned, people will often say “…but I didn’t mean…” and I’m sure that’s true. The bottom line, though, is that the r-word is never used to describe something or someone in a positive way. Retarded is never a compliment.
If you use the r-word, please stop. If a friend or family member uses the r-word, help them to understand why it’s hurtful.
Differently-abled children (and their parents) have dreams, just like you do. We also need friends and love, just like you do. We are more like you than we are different.
Don’t let the tiny things that distinguish us, separate us.
Wednesday, June 1, 2011
Friday, May 27, 2011
Saturday, May 21, 2011
Sunday, May 8, 2011
Tuesday, May 3, 2011
Anna finally had her OT evaluation through the school. The OT apologized that it took almost 6 months to get this done, she said she dropped the ball, not the school. Anyway, she scored Anna between 30-36 months. Her actual age is 42 months so I say not too bad!! She will be starting OT soon and will also get 6 weeks of it in the summer. She is still getting speech therapy as well but we will break from that for the summer.
Gabe is still the baby everyone dreams of. He is 9 weeks old now and 9 lbs 6 oz. He eats like a pig and is consistently sleeping 6 hours at night. I was not surprised to discover that he too has reflux and milk allergy- just like the girls did. Today was day one of my dairy free diet in an effort to help him out. He occasionally gets a touch of formula and we are using Alimentum. Dr. Goff started him on Zantac also. If it doesn't work we will switch to Prevacid. I do not drink cow's milk anyway but I will really miss cheese, yogurt, and most of all chocolate. I am losing weight from breastfeeding and cutting out chocolate will help me lose more so I will try to look at it from that perspective.
Now for the REALLY important news. Carly prayed a prayer of salvation and asked Jesus to come into her heart. I couldn't be more proud! She didn't want to tell us because she is afraid of being baptized, mostly it's the fear of being up in front of so many people. I reassured her that God wants her to do it when she is ready and not a moment before. I told her to take her time and we will continue to talk about it. I never expected her to make this decision at such a young age but I could not be happier. I've always said she has wisdom beyond her years- this is no different.
Ok. That is all the phone blogging I can handle for now...
Wednesday, April 20, 2011
Monday, April 11, 2011
Monday, April 4, 2011
Sunday, April 3, 2011
Sunday, March 27, 2011
Saturday, March 19, 2011
- Gabe is doing great. He is the sweetest and calmest baby. (Which I think I deserve might I add) He is eating great. He rarely cries. But man is this kid gassy!!
- At his appointment on Friday he was up to 6 lb 6 oz. That was up 6 oz from Sunday.
- We took all 3 kids to the Dallas World Aquarium on Thursday. It is Spring Break and we felt the girls were deserving of something fun to do. It was amazing and I highly recommend it although I probably would not go during Spring Break again. The girls loved it as did Kenneth and I. Gabe slept- good thing he got in for free!
- I had my 2 week OB follow up last week. I am back on my lisinopril and my b/p is getting better. It is still not ideal but I am getting there. My OB asked what I plan to do for birth control since I cannot take the pill due to my clotting disorder. I reminded him that he was supposed to tie my tubes but didn't. He said he was well aware of that and he did not do it on purpose. He said my body could not take anything else right now and that I would be the patient to have some crazy complication. He said Kenneth must have a vasectomy. He said we absolutely cannot have any more kids (uh, no argument here) So he said to tell Kenneth that he must have a vasectomy. Kenneth agreed to it. Thanks Dr Cummings- you rock! I will probably have a hysterectomy but not for a year so something has to be done before then.
- The girls are so smitten with this little guy. And I won't lie, I am too!!
Monday, March 14, 2011
Saturday, March 12, 2011
Ahh, we are on the home stretch! When we got to the hospital yesterday they had switched Gabe to all bottle feeds and no gavage. They left his NG tube in just in case. He did well with all his bottle feedings except 1 during the night last night. They rechecked his labs this morning and all still looks well so we are set for rooming in tonight and discharge home tomorrow morning. He still has his heart murmur but they said it is related to his pulmonary artery stenosis and that he will hopefully outgrow it by 6 months or so. They trust our pediatrician to keep up with it. He still has to do his car seat test but he has not had any lung issues since the first 2 days so I think it will go fine. Of course, as our luck would have it, Kenneth went back to work today. They are down to emergency staffing because of a horrible fire that is going on day #2 in this area. Our plan was for him to take off if we got the OK to room in tonight. Well, he can't take off now. It is OK though. The girls are going to spend the night with Kenneth's mom tonight and then he will pick them up when he gets off duty in the morning and bring them up to the hospital to meet their baby brother. It has been so weird that they have had a brother for over 2 weeks now but he has been basically non-existent in their lives. It is hard to explain. He is this little guy we talk about a lot but they really have no idea who he is. It's just weird. Anyway, they will get to meet him tomorrow morning. We are not telling them just in case something changes. I couldn't deal with disappointing them anymore in regards to Gabe. So it will all work out- just as it always does. God is always faithful and takes care of his people. I am learning day by day to praise God when the sun is shining and to also praise him in the storms. The storms always end eventually and the sun comes back out to shine...