I've been meaning to write a post about this topic for a while, but it seems like sometimes life gets in the way. I have been a bit blog lazy lately. A while back, I wrote a post about special needs' parents and the things that you shouldn't say to them....ever. As I sit here today thinking about that post and going over the list of things that bothered me, I feel kind of silly.
This was my list.....
- She sure looks like she has a mild case of Down syndrome.
- Her head is so round, she must be mild.
- Kids with Down syndrome are ALWAYS happy.
- I'm so sorry that this happened to your family.
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She looks so normal.
- My uncle's brother's nephew's cousin is autistic, so I know what it's like.
- Why didn't you stop having kids after the first one? WHAT???
- Did this happen because you and your husband are related?
- Wow! How old were you when you had her?
- You are a saint.
- Will you ever have any more children? That's kind of scary!
- Well, I guess it could be worse!
- God has given you a child forever.
- Does she actually look like a family member?
- You sure are handling this well.
- Do her brothers and sisters have a bond?
- Did you actually know when you were pregnant?
- What's wrong with her?
- Did you drink? Smoke? Do drugs during pregnancy?
- Will she always be like that?
- Is it somebody's fault?
- Did it come from your side of the family?
- They don't live very long, do they?
- I guess you won't have grandchildren.
- I'm sure she will get a job, maybe at Wal Mart or something.
- Do you take her out?
- Is her sister handicapped?
-
You should feed her more.
- Does she sleep?
- What will happen to her after you die?
- Is the rest of your family ok with this?
- You must be exhausted.
- Ummm....she's so......cute.
- Did you consider adoption?
- Is there a chance that she will outgrow it?
- I guess you can't go on vacations.
- Can I touch her?
- Stare....stare...stare....stare....stare.....
I don't know what you want to call it, but I have come to a point in my life, an epiphany, reached a great spot on the mountain, crossed a bridge. Whatever it is, it feels pretty good.
I have been overly protective when it comes to Adele. I overanalyze almost everything and I automatically assume that people are ignorant and that they can't see the beauty that lies within my child.
The first one on my list above, makes me laugh today. I laugh because I actually said this when I was pregnant with Adele. Those words came out of my mouth. I didn't know that I had said this until I recently came across a message that I had sent a friend on Facebook. I wanted my child to have a 'mild case' of Down syndrome.
Those words have irritated me when they come out of another person's mouth, yet I said the exact same thing. You know what this tells me? I was ignorant. I was uneducated when it comes to Down syndrome. I had no idea, yet I get offended and on the attack when others make these types of comments about my child. This one in particular doesn't really bother me, but it's a good example of where I used to be.
Recently, I have come across some posts on Facebook, where moms and dads are so bitter at others for the comments that they make about our children. I needed to take a step back. I get that we need to protect our children, we need to be on guard at all times because the world is out to get our kids, people are cruel.
I think what we need to realize is that we are the ones travelling this journey. We are the only ones who know exactly what it is like to walk in these shoes. We are the only ones who experience the major ups and down when you have a medically fragile child or a child with special needs. We need to stop assuming that others get it. They don't get it. Doctors, nurses, therapists and other professionals don't always get it. I've been witness to it, but it's up to us to speak up, we need to encourage change. Sitting back in your chair, biting your tongue and cursing in your head is not a solution.
People don't know what to say. People don't know how to say it. People aren't always out to get us. People sometimes feel uncomfortable because they don't want to say the wrong thing, they don't want to hurt our feelings, then it comes out all wrong and we get upset and post it all over social media that another jerk made an insensitive comment about our child.
I realized that I was one of those people before Adele came into our lives. I know I said the wrong things, I asked the wrong questions, I said things in a way that may have been offensive. Never would I have wanted to cause pain or hurt to others, but it didn't always come out right. I could just imagine what others said about me after I walked away. What did I expect of others? I wanted to learn, I wanted to understand and I needed for others to respect that I required some guidance.
I think sometimes we forget to relax. Last week, I was at Heritage Park with the girls. This lady kept staring at Adele. I got my back up and was going to ask her what she was looking at. When we walked past her, she stopped me and told me that Adele was absolutely gorgeous. She told me that she was a perfect little package. What did this teach me? Stop assuming the worst. Stop looking for negativity. Stop thinking that the world is a big cruel place.
While reading this blog post, don't come to the conclusion that I have turned into a wimp or that I will tolerate abuse or hatred towards our children. I will always advocate for our children, I will fight for what is right and I will stand strong behind my beliefs, values and morals.
There are some things that are inexcusable and offensive to myself and my family. I do not waiver when it comes to these three things.
1) Retarded - Just don't use it in any context
2) Down's baby/child - first person language is a must
3) Comments that are deliberately hurtful and malicious
The days go by so quickly. The moments become distant memories. I don't want to look back in 10 years and regret that I let worry and fear consume my days. There are assholes everywhere and there will be plenty who will come in and out of our lives, but there are so many amazing and kind people in the world who will love our children, who will support us and who exude happiness, love and light. Be the parent that our children need us to be. Educate others, but do it with kindness and respect.
I want my children to see their mom as a person who is making a positive difference in the world, one who does not let negative consume our days, but a mom who welcomes others into our lives. Our children are a product of their environment. Slow down. Enjoy Italy, Holland and all the other places that our children will take us.
Brandie Weikle created a project called the 1000 Families Project. It focuses on the new family, who is in our circle and modern views on family life. It's a really beautiful project filled with love and amazing heartfelt stories.
Our story was featured today.....
I feel like I haven't written about Down syndrome in a long time. It's funny because I started the blog with full intentions on just writing about our journey with Down syndrome, but it turned into so much more. I started the blog after we found out about Adele's diagnosis, that was around April 2013. I have written just over 200 posts, with over 200 000 views. I am so thankful to those of you who have followed along on this journey with our family.
In the last two months, I have turned a corner when it comes to Down syndrome. Adele is 22 months old and a fiery, spicy little girl. Up until this point, I have focused so much of my attention on Down syndrome and all that it entails, that I have forgotten that she is just a little girl. I have focused my attention on therapy, vision appointments, hearing appointments and feeding schedules. I have forgotten that she is just a little girl. I have focused my attention on the future; school, friends and life. I have forgotten that she is just a little girl.
Recently, Adele has really found herself. She is coming into her own. She is figuring out who she is, what works for her and how she fits in with our family. This is all within the past couple of months. Before this, I was focusing on the delays (although I claimed that I was just taking it day by day) and how we could get Adele caught up, get her to where she needs to be. What I have recently realized, she is where she needs to be. She is content. She is still not crawling and she is not ready to start running around the house, but she is one verbal kid. She is able to express herself, sign what she needs and uses lots of 'words' with her sister. She is not frustrated, nor are we. She is energetic and full of spirit, life and joy.
In these past two months, I have seen Adele transition from a baby to a little girl. Brinley and Adele play together, wrestle together and laugh together. They are playmates and I can see a beautiful friendship and bond forming between the two girls. I didn't see this before because I was so focused on what we needed to get done, where we needed to be and how we would get there.
I have read the saying many times over 'I Am Not Down Syndrome' and to be honest, it kind of bothered me. I didn't think that it was something that we needed to shout from the rooftops. Why would we, as parents, put our child on display and tell others that Down syndrome does not define them?
But alas, some of us need the reminder and it's obvious that I needed it. I think that sometimes we shout all of these things to others, start up Facebook pages, write blogs, but it's us who feels the insecurities. We fear the diagnosis and what it entails. We feel that if we yell at the world enough times, it will make us feel better and more secure and comfortable with Down syndrome. When we join the Facebook groups, we brag, ask questions and reassure others that our world is how it should be, a beautiful and wonderful journey. We put on a happy face for others and tell them that we are ok and that everything is how it should be; yet, behind closed doors, we cry, we confide in our partner that we are scared. As a specials needs' parent, I am not looking to be put on a pedestal or given a hug each time you see me, but I want you to know that it's sometimes really hard. It's sometimes overwhelming and sometimes you fear the worst. I don't always need to be the strong parent, the one who shouts from the rooftops that I have it all together, that I am confident with all of my decisions and that I feel ok when I think about Adele's future. I am not always sure, I am not always ok with the diagnosis, I am not always the best advocate for our children, but I am trying and I feel blessed to be surrounded by an amazing group of moms who are going through a similar journey.
As I move forward, as Adele gets bigger and stronger and smarter, I am learning to face the day with love and patience. I am learning to accept things as they are and to allow my children to be who they need to be. I am confident that Adele will be ok, but I also have moments where the worry takes over and I feel almost breathless and unable to cope with the thoughts about the future. It's such a whirlwind of emotions, with amazing and beautiful moments combined with fear and worry.
I came across a post today that I want to share with you from The New Family ......
"I quickly learned that having a child with extraordinary needs means needing an extraordinary family.....I have always thought of my family as the people you can count on to pull you through in tough times, celebrate the good, root for you when you're going for gold and inspire you to be your best self. Two and a half years ago, I thought all of that had to come from under our own roof, but I've learned since that, at least for us, the opposite is true. There are countless people in our family now and for that, I'm so very grateful. Although, it's Alma that's drawn everyone in, we're all better for it." Melanie Coté
This journey is about working together and supporting one another. We will celebrate together and offer words of encouragement and support along the way, but we will also cry on each other's shoulders and share our fears and worries. I don't want these moments to fly by. I don't want my days to be focused on when we will hit our next milestone. I want to love the time that I have with my two girls and feel reassured that this was the journey that was given to me, embrace it. We will climb this mountain and when we reach the top, I'm going to sit down with the biggest rum and coke and celebrate. We've got this.....most of the time. :)
It will all be ok.
Today was the day; pap smear day! I have been putting it off for quite some time, not really intentionally, just kind of didn't make it a priority. I called my doctor a month ago and took the plunge. I booked!
I'm not worried about the duck bill part, I am more concerned about the grooming that should take place before the appointment. I mean, come on, I'm a mom, I'm busy, I let myself go.
My anxiety kicked in as soon as I hung up the phone, I knew that I would have to take care of my neglected areas and make myself look presentable. Then I had another thought, most of his patients are senior citizens, so I'm sure that my undercarriage would be welcomed. On a scale of 1-10, I would be at least a 5ish. I tossed the idea around whether or not I needed to weed and de-clutter. I had a whole month to get my thoughts in order.
When I was younger, it wasn't an issue. I always took care of myself. I was single and needed to be ready at a moments' notice. ;) Times have changed; I am married with two kids. The few times a year that I shave my legs, I have to dispose of the razor after each use because it's dull after the shaving is complete. I always felt pretty confident in previous years, go in, strip from the waist down and voila, all done. This was a whole new ballgame.
Last Monday, I started talking about the appointment with James. He giggled and I laughed, but inside, I was thinking of the chore that was to take place in the near future. I continued to put it off. I'm busy.
Well, last night was the deadline. We had been out all day, so I was already hot and sweaty and tired. I needed a shower. I looked at James and told him that it was time, it was time to turn my honey pot into a work of art. I asked my husband for advice. I asked him what route I should take. He suggested that I call the neighbours and ask to borrow their weed whacker. I laughed, yet deep down inside, I actually considered it.
I brought out his electric razor and decided on a shape. The shape would be.....no shape. I wasn't going to try a heart or diamond, I would need a stencil and I'm afraid that we don't have those shapes in the art box. The goal was to make it look presentable.
Then I remembered that four years ago, I bought a Groupon for laser hair removal. I never used it, obviously. I wondered if I could call and beg for a 10:00pm appointment?? That sure would take care of the problem.
Right before I closed the bathroom door, I asked James if I needed to have the razor plugged into the wall? He was skeptical, unsure whether or not there was enough battery life. He didn't have a lot of confidence in his wife.
I closed the bathroom door, turned on the razor and slowly, almost like a slow motion movie sequence, I went in for the kill. I realized that there was an added obstacle; since having children, I now have that dog jowl type tummy that hangs. This was going to take some work.
There were beads of sweat on my forehead and upper lip. I felt a bit faint and was considering giving up. This was way too much work for a 20 second appointment.
I am not one to give in when times get tough, I fight the fight, so I carried on.
Then it came to me, I should have left it the way it was. YES! I could have found some sparkle spray and added some pretty to it. That would have been a pleasant surprise for the doctor and for James.
I always come up with stellar ideas either during or after the fact.
I continued the labour intensive process. As I looked down, I was wondering if we had any Draino. I never thought about clogging up the drain. I will deal with it later, if we need to go down that road.
I showered and finished up the masterpiece. Luckily, we didn't need to call the plumber.
I wrapped myself up in a towel and exited the bathroom. James asked how it went and I told him that I didn't care. I was hot and wishing I had that sparkle spray.
Appointment day has arrived. I needed to bring both children with me. I wasn't too sure if Brinley would want to take part or just sit back and play a game on my phone. I was hoping that she would go with the latter.
I get to the clinic. I check in. No, I don't check in. I'm not booked in for an appointment. I just drove 50 minutes, shaved my hoo ha and brought two kids with me to get my coochie checked. I better be in your system. The whole clinic is filled with mostly men. The receptionist asks me what I am there for?
A) Do I whisper or sign that I am there for a pap smear?
B) Just say it loud and proud?
C) Cry?
I do what I do best.....I said it loud and proud. Just as the words PAP and SMEAR came out of my mouth, the whole clinic went silent. It was one of my better moments. I would get in but needed to wait a while.
I looked around the room and noticed a man who looked exactly like Billy Bob Thornton. I actually had to do a double take. He was standing right beside me when I announced why I was at the clinic. He never made eye contact with me again.
My name was called. I walked into the room, where I was expecting maybe a dim light, which would make the vajayjay look a tad bit better. No, it was the brightest room that I have ever seen. I could have worn sunglasses and still would be squinting.
I take off my leggings and my panties. I of course do what every other woman does, I wrap my undies up nicely in my tights so that they are totally out of sight.
I lay down on the bed. Adele starts yelling at me and Brinley wants to know why I am covered in a sheet. Please Dr. M, let's hurry up. I really want to get this over and done with, get home and drink booze.
Dr. M enters the room and I can feel my heart start to race. I know that he won't judge my shave job, but I'm sure he will notice. I decide to talk about the children and apologize for bringing them with me. He, of course, is just fine with it.
The pap is about to start and Brinley decides that she would like to be with the doctor. We encourage her to sit on the chair and play on mom's phone. We lose.
My knees are stuck together but my bum is where it should be, near the end of the table. I get the process. I look down and see the stirrups. I know that my feet belong in them, I mean, I've done this before.
Damn, I should have gone with the sparkle spray. Maybe he'll dim the lights.
On goes the spotlight. My vagina is the centre of attention.
I place my feet in the stirrups but my knees are like magnets. They are attracted to each other and no matter what I do, they find one another. The doctor tells me to open my legs and relax them. RELAX THEM!?!?! In about 10 seconds, you are going to put a duck bill in me and scrape my walls. RELAX!?!?!
I follow his instructions. He looks. He is expressionless, which means, I am ok. He's not scared but he's also not overly pleased. I guess you don't really want your doctor to be pleased......
As I am being invaded, Brinley makes her way up to my face and rubs my cheek. She snuggles her face into mine and looks at me with loving eyes. It was pretty comical. I mean, I wasn't crying or upset and wasn't acting as if my life was coming to an end. I guess she sensed that mom was nervous.
The pap ended, Brinley looked at me and yelled "YAY MOM!" This happened a few times. Dr. M informed me that in all his years of doing pap smears, he has never had somebody cheer the patient on.
I jump off the table, find my nicely rolled up panties hidden in my tights and get dressed.
I am a champion. I felt like I had just conquered the world. I took charge of my life and my lady parts. It's a good day. Ladies, go book your paps now, take care of your body and buy a bottle of sparkle spray. :)
