What I'd Like You To Know About Us

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.

A Camping We Will Go (Well, Sort Of)

Carly got a tent for her birthday last summer and has been wanting to go camping since. Shortly after her birthday was when I found out I was pregnant and was not really up for camping in a tent. I felt bad about it but I just couldn't do it. So then we had Gabe and now camping out somehwere in a tent still isn't really feasible right now. It isn't fair to Carly though to not get to camp so we decided we would make it happen for her. So we set up camp...in the yard. We have 5 acres and so there is plenty of room to pretend. We set up the tent, set up a little pool, and invited the neighbors over. The kids played in the pool for hours. Then we grilled burgers. When it got dark we started a little campfire and made s'mores. After that the boys went home and myself and the girls were going to spend the night in the tent. It was so hot and humid but I had made a promise and I was going to stick to it. Lucky for me, the girls got scared and we came in about midnight. My bed had not ever felt so good! It actually was a really fun day and I'm glad we were finally able to make "camping" happen. It was also so nice to be at the house because Gabe was ok outside for a little bit but then he was ready to go inside and sleep. We were able to just take the baby moinitor outside. I won't lie, indoor plumbing was nice too!

I called the neurologist yesterday about Anna. I was hoping for a check of her Tegretol level or something simple like that. Instead, he wants another EEG. Luckily it will only be a 1 hour one but still, getting her hooked up is the bad part. I was really mad for a little bit- not at the doctor but at the seizures themselves. Then I had to remember all of the good things the seizures brought us like eating and loosing the G button and so I got over my madness pretty quickly. I guess I have a love hate relationship with the seizures. I guess it will always be that way...

Side Effexor

I can't believe it has already been another week since I wrote last. I used to write every 2-3 days but that seems as if it has become an impossible task these days. I think of so much I want to say but I just can't find the time. Carly lost another tooth today so I am awake later than usual waiting for her to go to sleep so that the tooth fairy can come. Who thought of the tooth fairy anyway? Obviously whoever it was didn't need to sleep like I do. Oh well, I may as well get over it because I still have many more teeth to go in this household.

I have been so sure Anna has not been having seizures and I have been so pleased with that. Today, Carly and Kenzie were playing at our house and they asked me why Anna doesn't blink. I was like, "what?" They said, "Yeah, a lot of times when we are playing she just stares at us and doesn't blink or anything." Grrr, sounds like seizures again. We have a neuro appointment next month so I guess we will talk about that then. I was so sure we were done with seizures. I guess I was wrong. I am not sure if they can go up on her Tegretol dose any more or if we have to add something else.

It is no secret that I have battled depression most of my life. I began medication for it in 7th grade and other than a few times when I wanted to not surrender to the pills, I have always been medicated. I had posted awhile back about how I was ready to go postal on someone at my insurance company because they refused to pay for the one drug that had ever really worked for me, Effexor XR. They would only pay for Pristiq which is the new Effexor XR. Pristiq came out about the same time that Effexor XR was going to lose its patent and go generic. Anyway, I was mad about having to switch and actually scared to death to do it because I had been so leveled out on the Effexor. But finances dictated that the switch had to be made. I had been on Pristiq for quite awhile and despite my fears, it had been a great drug. I didn't think it was any better than the Effexor but seemed to work just as well. I had a stroke of genius, or so I thought, about a month ago and decided that since switching back to the now generic Effexor XR would save about $22 a month (the insurance will cover the generic) that I should make the switch. And so I did. It wasn't until I had a crying fit the other night that I realized that the medicine was just not working. Looking back over the past month I realized I had been tired and unable to feel rested no matter how much I slept, irritable, and just overall felt like crap. I decided to go get the Pristiq filled and switch back. Voila- the sadness and fatigue disappeared almost instantly and I feel wonderful again. They say you can't put a price on happiness, but I think I can. Its $32 a month...

Still Here

Today was the Cooke County Ballet Academy's Annual Recital. This was Carly's fourth year to dance and Anna's first. Carly did jazz to "Rockin' Robin" and Anna did ballet do "Oh How I Love Jesus" and tap to "Maypole Dance." Carly did an awesome job as she always has. She loves dance and much to my surprise loves to be on stage. Anna brought me to tears, happy tears. Even though she only either moved her arms or her legs, never both at the same time, she did it. She got up there and did her best. I think it must be hard for her to coordinate all of that at the same time. I am so proud of both girls, both for different reasons.

Gabe is still the perfect baby. He is so happy most of the time. He is sleeping at least a 6 hour stretch and sometimes more. Last night he slept for 10 hours. I had worked four 12 hour shifts in a row last week and desperately needed sleep. I think he knew it because he slept so soundly. At his 2 month check up (and shots BOO) he was 10 lbs and 22 inches. He is a little chunk! I cannot believe he is already 12 weeks old now. Where does the time go?

I don't even remember if I had posted that Anna had an OT evaluation last month. She does qualify and will be getting those services hopefully in the summer and for sure next school year. She has the summer off for speech and will start up again next year. I back to considering switching districts again. I really need to pray harder about it that the right decision will just become abundantly clear. There are pros and cons to both districts and I am not sure what the right way to go is. Honestly, neither option is all that desirable but we have to deal with what is available.

We have been continuing to patch Anna's eye and for awhile I thought we were seeing some improvement but now I think maybe I was fooling myself into thinking we were seeing it. Her eye is not any better. We go back to the opthamologist next month and I feel pretty certain he will recommend surgery. I talked to a lady who didn't have the surgery for her child when he was young and he lost the vision in that eye. He wanted to go into the military and was denied due to his blindness in that eye. I do not want to put up possible roadblocks in her future just because I wanted to avoid another surgery. We will keep patching until the appointment though and maybe it will help. Doubtful, but maybe.

We also have a neurology appointment next month. It is mostly a seizure follow up which I am proud to say have been absent for quite some time. She will still need the Tegretol until she is seizure free for 2 years but that is fine by me. It seems to help her sleep better so I am in no rush to stop it. We have got to discuss with Dr. Hernandez her impulsivity though. She is hyper and that is tolerable but she seems to not be able to control her impulses most of the time. The Dr had cautioned me awhile back that this would probably be in our future. I had hoped he was wrong but I guess he wasn't. I hope it doesn't mean more medication but if it does we will cross that bridge when we get to it. Overall she is still doing so well and if these are the problems we face then I still feel like we have been blessed.

Work has been so super crazy. Usually starting mid April through about September is our slow season. It works out well because people are going on vacation and our staffing needs are lower. Not so much this year. We have a 20 bed ICU and it is staying full. I am not complaining, overtime is nice, but it is just crazy busy and I am not sure if it is going to slow down. Pretty much everybody is working overtime and some days we are still short on staff. The 4 12s in a row last week nearly killed me but it will be nice when the paycheck arrives! Since the rapture didn't happen today I guess I had better get to bed. 5am will come early and the 12 hours that follow will be long...

The PF

Happy Mother's Day. I had a great one. Although Kenneth had to work and I missed him dearly I really enjoyed my time with other family and with my precious kiddos. I am so thankful for each of them and for the way they are each so very different. I hope your day was wonderful as well.

Yesterday was the annual Preeclampsia Promise Walk. It is a huge fundraiser for the Preeclampsia Foundation. I had to miss it this year because I had to work. I don't want to miss telling others about the cause though. It is a cause that is near and dear to my heart since it has affected all 3 of my pregnancies. Please take a moment to visit the Preeclampsia Foundation and familiarize yourself with the signs and symptoms. The life you save might just be your child's or your own. Our family's story was chosen as the feature story for this month. I feel so honored to be the feature and hope that sharing our story can somehow prevent our story from ever repeating itself in someone else's family. A special thanks goes out to Nicole Purnell. She organized our local walk and has gone above and beyond for the foundation to honor her son Cooper who she lost late in her pregnancy due to this horrible disease.

I know I have been neglecting this poor blog lately. I miss it dearly. It has been like losing touch with a close friend. This is where I go to unwind and make sense of all that circulates in my head and in my heart. I promise to be back more really soon. I am really struggling to find any "me" time right now as I am still adjusting to having 3 kids. It seems like by the time I get them all to bed and get some household chores done that I am about to fall over and I barely make it to the bed. Thank God Gabe is such a good baby and is sleeping usually 6-7 hours at night. Anna is still sleeping through the night too and is now actually not wanting to get up in the mornings. It is nice. Well, I have hit that sleepy time again. It is early but I work again tomorrow and will be up early. I''ll be back...

Trio

On The Fritz

Our Internet has been on the fritz and I despise blogging from my phone so that is why it has been awhile since I've posted. I got the Internet working again yesterday but was too tired to post. I went to blog today and the blasted Internet is not working again. I guess I'll be buying a new router tomorrow. So here I am, blogging from my phone.

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...