Today was an up and down day.
A good friend of mine called and told me that her friend, who is 13 weeks pregnant, was told today by her doctor that her neuchal is positive. There was no other information given to her and her husband. No ratios. No information on what to do next. No care and no concern. They were told that they could go for an amnio, then proceed with an abortion if they were to find out that baby has Down syndrome. I'm sorry, the doctor said what to you? Tell me again that the doctor, an educated professional who follows a code of conduct, she didn't tell you that you could then go for an abortion?? Right???
What a douche! Yes, I used the word, douche. I've actually used it twice today and think that it will make a comeback and used on people who are incredibly insensitive and cold and unprofessional.
As my friend was telling me about the appointment, every feeling rushed back. Every feeling that I had that day, the day that we got the phone call. Told over the phone. Told in a way that I should have expected it, after all, I was 36 years old. I was no longer young. All the feelings that I felt that day, the feeling of having a perfect child, all down the drain. The feeling that my child would be adorable, all down the drain. The feeling that my child would go to university, all down the drain. The feeling that I had done something wrong. The feeling that we should have started trying right away after we got married. The feeling that I would have to take care of this little being for the rest of my life. The feeling that Brinley and her sister wouldn't like each other, there would be no bond, they would have nothing in common. The feeling that my child would have an aide, would start crawling later, start walking later, start talking later, be potty trained later. I felt that all of my dreams for a healthy, perfect child, just went down the drain.
It was a day that I will never forget and as my friend told me how her friend was told, it made me ill. She needed some facts, she needed some reassurance, she needed support. She is now left with a broken heart. She is left with not knowing what to do, what to say, how to react. Nothing. Just a cold doctor who told her that she could have an abortion.
On the day that we found out that we had a 1:2 chance that our baby would have Down syndrome, it was my doctor that made us smile. It was my doctor that gave us the facts. It was my doctor who set us up with the best genetics' counsellor. It was my doctor who hugged us and told us that we will be ok. It was my doctor who cried with us and let us cry with her and let us tell her that we couldn't possibly do any of this, because this wasn't the path that we were ready for....it wasn't the path that we had planned. It wasn't the path that we expected. We were on a path now with so many hurdles and bumps in the road and the unknown. It was a path that we never asked for. We didn't ask for this. Why would we be punished? Yes, that thought went through my mind. I never shared that with anybody, not even James. I wondered why we would be the ones to be punished? What did I do to deserve a baby that wasn't perfect? You have so many thoughts and emotions running through your head, you don't know which way is up. You slump into a bit of a depression and you cry so much that you can't cry anymore, then you figure out which path as a family, you will take. Will you take the path that 90% of women choose. Do you terminate? Do you keep going and love every minute of the path and learn from the bumps and hurdles?
It's tough. I remember hearing from so many women that if they ever found our during pregnancy that they were expecting a little one with Down syndrome, they would continue with the pregnancy, there is no way that they would terminate. Do I believe all of those comments? Not for a second. You will never know how it feels to be told that your trip to Italy, will turn into a trip to Holland. You don't know unless who have been placed in that position. I know that in your heart, you would love your child no matter what and that you could handle it, but when you are experiencing it first hand, it is very different. It is so difficult. You feel selfish. You think about yourself. You think about how difficult it could be on you. Then you think about your unborn baby. What if our baby has a heart defect? What if our baby can't suck and swallow properly? What if baby has GI concerns? What if our baby doesn't have a mild form of Down syndrome, but instead is on the moderate end of the spectrum? Is this fair?
That phone call today took me back. I could actually feel in the pit of my stomach, the feelings that they are experiencing today. The feeling of despair. The feeling of hopelessness especially when your doctor isn't supportive. Right now, she is sitting at home and her mind is racing. Her heart is pounding and she has so many questions. So many questions that her doctor should have answered today. They are so frustrated.
Where James and I are today is world's away from the day we found out. We are in a place of contentment. We are in a place of beauty. What I realized is that the trip to Italy would have been boring. Italy has a bunch of dirty streets and garbage on the roads and the scenery isn't always perfect and serene. We realized that the trip to Holland is beautiful. It is filled with joy and pretty scenery and beautiful people. It is going to be so much more interesting, filled with love and hand holding and laughs!
If you want to read the whole poem, it is just beautiful. I posted it a while ago. It is written by Emily Perl Kingsley.
The path that we chose is the path that was meant for us. It was the best decision. It's difficult when you are pregnant, the unknown. It's hard. When you hold your baby, your perfect baby, all you feel is love. You see perfection. You see this loving beautiful soul. You see this amazing being that you created. You don't see the journey ahead. You see a miracle. You don't see Down syndrome. You see your child. You don't see two sisters who will never connect. You see two sisters who from the moment they saw each other, there was true love.
Life is a journey whether you have a child with special needs or not...life is full of ups and downs. Life is going to throw us curveballs with both girls. Adele's life has been amazing and will only continue to get better. She will walk and talk and learn to go on the potty. She will go to school and play with friends and laugh and cry and fall in love. She IS adorable and has already melted many hearts. She has brought so many people into our lives, people who are the most amazing and loving human beings. James and I have been blessed. We feel honoured that we were chosen to be Adele's parents. I wouldn't change anything. Life is going to be beautiful.
A little contest....I want to get to 100 000 views by April. I am at 75 000 right now. I am up a thousand from yesterday. If you share my blog, tag me in the post and you will be entered in a draw for a great prize!! A really great prize. If you are sharing again today, you will have another chance to win! I will mail it to anywhere in the world. My goal...get the word out. Bring reassurance to families. Bring comfort and joy to those who are struggling. Lots of shares so far! If we are not friends on Facebook, send me an email after you have shared, at firstname.lastname@example.org or comment below. <3
7 January 2014
So beautiful xo
Last post, I touched on co-sleeping and wasn't too sure if others would share their opinions and experiences. Well, some of you did and I loved hearing from you. I wanted to share some of the responses from others.
I don't intentionally co-sleep because to be honest I don't like it, but she wakes up every night, only once around 4:30 or 5 a.m. and I cannot for the life of me get her back into a deep sleep in her crib, so being the selfish wanting sleep mother that I am it is just much easier to bring her to bed with us - she is ALWAYS lying freakin' horizontally with her feet in someone's face and kicks the crap outta us! We have a king bed and it still isn't big enough.
You know my thoughts in co-sleeping. Big fan! Got lots of raised eyebrows but I didn't care. It's whatever works for your family. Did it with number 1 and she turned out fantastic. Have done it with number 2 for four years now. He always has the choice of his bed or mommy's and he usually chooses mine but it's his choice.
Happy Birthday sweet girl <3
I co-slept with all 5 of my babies. L will not go in her crib- 45 min of screaming proves that! It's done best if you have a king size bed, otherwise your fighting for bed space with a little person. Eventually they moved off the bed to a spot on out floor with a mat. Then to their own bedrooms. My 9 and 7 year old sleep together when it's not a school night. I myself am a very light sleeper, my instincts kick in and just know when something's wrong. Co-sleeping thumbs up.
I've always co-slept. It works for some and not for others. Again, it's one of those topic where you do what works for you and your kids.
You know best when they need you like that. We have and will do when they need us, it has not ever become an expectation or habit...sometimes when they need you, it just feels nice :)
I'm personally not a fan of co-sleeping (mostly because my bed is too small), however after having our second, she slept in my bed for the first six weeks, I learned you do what you have to do survive! I needed sleep and she would only sleep in my arms so she moved in! I had a terrible sleep but a strong bond with my baby. So overall, I say do what works for you and your family!
When our little one has those nights she ends up in our bed too... although it is always feet kicking mom in the face.... I wake up with bruises and scratches, and she has had a great night sleep.
Tummy time turned into a 2.5 hour nap! :)
It was hard when I had braces and he was a year old and would head butt me in the night. I would wake up with a fat lip and dried blood. Once I was hit so hard, I thought he busted a brace. I remember waking up going Son of a Bitch and blood everywhere and we still kept co-sleeping.
My two cents on co-sleeping: And I'm putting this in a private message because I don't care want to spark a debate; I don't care what others think. It worked for us! Our first didn't spend more than a handful of nights in his own crib and we didn't even bother setting up a crib for our second. I understand the dangers, we were very careful to set the baby up high in the bed between our heads, with baby's own blanket (it was a firm mattress and wide bed so pillow risks were minimal). Neither of us were (!) overweight (ah the good old days) and didn't drink. much. Anyhow, it worked for our family. Many people don't approve of a family bed. I understand it doesn't work and isn't the best choice for everyone. We had success. The kids transitioned out easily with the introduction of the toddler bed sidecar (then it was moved into their own bedroom) (Prior to that I used a bedrail on the outside edge and learned to breastfeed while lying down, both sides… BEST MOVE EVER!)
Before I had kids I was full of great advice that I'd read in textbooks or heard from others. After I had kids, and even today with parents, my advice is that every situation is entirely unique. Go with your gut instinct. You know your family better than anyone else. There is so much information "out there" in books and professional advice (which is 98% personal opinion), just keep looking and you are bound to find the information that matches your instincts. And that's my unsolicited advice!
Love all of the responses! Thanks for sharing! :)
A little contest....I want to get to 100 000 views by April. I am at 74 000 right now. If you share my blog, tag me in the post and you will be entered in a draw to win a great prize!! A really great prize. I will mail it to anywhere in the world. My goal...get the word out. Bring reassurance to families. Bring comfort and joy to those who are struggling.
If we are not friends on Facebook, you can comment below or email me and let me know that you shared the blog. email@example.com :)
3 January 2014
HAPPY NEW YEAR!
Adele continues to get stronger and was pushing herself up on her knees last night while having some tummy time. She would shimmy forward, just an inch, but she moved and she did great. Hitting milestones with Adele makes us smile. It makes me realize just how precious she is and just how much of a miracle she is....just a perfect miracle.
I know that as she gets older, the milestones will slow down a bit, but that's ok. The thing is, if she walks at two or two and a half, she is still going to walk. If she says mom at three years old, she is still going to say mom. She may not be potty trained until she's four, but she will be potty trained. It'll all happen. She will get there. I will get frustrated and sad, I know I will, but I also know that when something great happens, we will be over the moon.
Last night I had a moment of such happiness. I wasn't too sure exactly why. Maybe it was that Adele had her second ever successful bath, no tears, just giggles and lots of kicking, maybe it was that Brinley was being silly and was making us laugh, maybe it was that Adele had a runny poop, maybe it was that life just feels good right now. I felt good. We have such busy lives and always on our toes with these two girls, but I truly couldn't imagine my life any other way.
Although.....last night, Adele was breathing very loudly, all night long and Brinley cried and cried. Brinley has never done this before. She is such a good sleeper but I think she is hitting a bit of a stage. It better pass in a day or two. ;) The crying started at 1:00am. She got herself so upset and wouldn't go back to sleep. Yup, I did it! Don't judge me. Don't criticize me. I got her and brought her into our bed. She fell asleep and I had a crap sleep. She managed to sleep with her feet on James' head and her head pushed up against mine. She was completely horizontal. It was so uncomfortable, but she slept. I would have slept with her but my butt won't fit in the crib....what a sight that would be! I wonder sometimes though why co-sleeping is so frowned upon. Why isn't it ok? I do get that when they are babies, it can be dangerous, very dangerous, but if you have things set up properly and safely, what is the problem? If your child is still sleeping with you when they're 18, you may need to visit a therapist. That is a bit too old and perhaps a tad creepy! It's just not really talked about. Maybe it's just as touchy as politics and vaccinations?? ;) My plan is to not do this again, not because I am against it, but because obviously a king sized bed is not big enough for Brinley. Any opinions on co-sleeping?
The only thing that I think I would change right now, would be that gross flap of skin that just kind of blows in the wind. You know, that flap that you get after having a baby. That flap that looks kind of wrinkly and just lays there. That flap that would only stay in place if you wore spanx. That flap. I can't stand it. Otherwise, life is pretty sweet.
We've had some play dates lately, they always make me smile. I love seeing Brinley with other kiddies. She's so shy, yet she's fiery and crazy. Such a good mixture. She is truly a great little girl. I think we will keep her.
Tummy time is rough!
Tummy time with daddy :)
Yup, playing robot with a bag over our head! We had a chat about this one and she ignored me!
Hanging in my leisure suit, striking a pose!
This worked well!
A lot of love lately! Brinley wants to be around Adele all of the time :)
Ange taking a selfie. Thought she would want me to share! :)
31 December 2013
I just wanted to share a few pictures that prove to everybody that I am a horrible mother and when my child is in crisis or could use a hug, I grab the camera. Why does social media play such a major role in my life? :)
Just had my two month shots!
The start of monthly torture!
You'll like the Bumbo! It wasn't cheap!
Come on, the exersaucer is fun! This could be interpreted as a smile!
HA! HA! Keep picking...I'll grab the camera!
Here, take the toy and smile!
Just stay in the box! Come on, it's fun!
Ha! Ha! She's scared of the bunny!
Spilled my juice all over myself in the NICU! Now, I'm naked!
Just give mommy another 10 seconds!
We do this every month. SIT DOWN!
I actually took this picture to email it to daddy...but pretty eyelashes!
Ha! Ha! She's scared of the donkey!
I just fell on my face now you want me to smile for the camera?!?!
Mom, I can't breathe...like for real!
Oh come on kids, it could be worse.....I think!!
Hurry!! Take the picture! It's so funny!
Happy New Year!!! :)
26 December 2013
Today is Boxing Day and all we did was unpack all the toys and games and tech toys and more toys and books and some more toys. Adele napped on me for a couple of hours, which was nice. I haven't showered yet and I'm tired. It's funny what Christmas does to your body. It knocks you down and I didn't even cook dinner. It's always busy with two girls who are just over 16 months apart. It's beautiful and busy. Spending time with family is truly all you need and maybe a yummy turkey dinner.
We celebrated my birthday as a family on the 23rd, then spent Christmas Eve at my parent's house, where Danika and Ryder were just itching to open up gifts. I don't really help matters because I tease them relentlessly. We decided to get them only one big gift this year instead of a bunch of smaller things that my sister will eventually post on the swap n buy site when she needs a toy clear out. Ryder got a kid's tablet and Danika got a grown up tablet. Ange texted me today and said that the kids love their tech toys.
We were all spoiled on Christmas. The amount of gifts under the tree was unreal. Sometimes I actually feel bad and that maybe we take it too far....it's a lot.
Danika playing with the tablet :)
At the end of the gift opening, mom and dad came back with a little box and handed it to Danika. They had the family gather around and dad grabbed the camera so he could record the moment. I was thinking 'HOLY CRAP, Danika is getting something so sweet, maybe it's her whole college education paid for, maybe the promise of a car for when she's sixteen.'
Danika opened the box and pulled out a piece of paper. Ange was looking over her shoulder then I saw tears.
Great, somebody is dying and this is how they tell us, Christmas morning.
Mom and dad are calling it quits.
Mom is pregnant. :))) HA! HA! HA! HA!
A TRIP TO DISNEYLAND for the whole family, all ten of us!
There were lots of tears and laughter and excitement in the room.
Mom told us that everything is paid for, four days of Disney fun!
My parents were so excited to give us all this gift. Dad said that they have waited eight years, since Danika was born. We all talk about it often and just couldn't decide when would be the best time to go, now it's the whole family.
Danika and Ryder are the perfect age for Disneyland, eight and almost five years old, whereas Brinley and Adele are a bit young. Brinley, I know would have a blast, her and Danika are best friends, it is the sweetest sight and seeing them in Disneyland would be priceless. We worry a bit about Adele and are going to speak to the pediatrician and see if she would be ok to go on the plane etc. I know that families travel every day, I just worry about their ears on the plane and if Adele would need her oxygen, what if she gets sick......
I'm not worried about the work part of it as we have our family there to help and support. We just need some other questions answered first before we make a final decision.
I want to write about how one person made it sound like it would be the worst thing ever to take the girls to Disneyland, but I don't want to stoop to a level that will only cause issues. I chalk it up to jealousy. :) I wonder sometimes why people can't enjoy other's excitement and joy. It is the Christmas season. Boo on negativity.
Another gift that meant a lot was the one I got for James. As most of you know, James lost a lot of personal belongings in the flood. He has downplayed the loss and tells me that his plan was to get rid of some items, but this was no way for his stuff to go....
I bought him the first GI Joe comic in the original series, signed by the creator of the story and the artists. I cried, James cried. I can't replace all of the items, but this helps a bit to put a smile back on James' face. It was a nice moment.
This year, we opened some of our gifts at home and our stockings. I wanted to take my stocking to mom and dad's house to open but James said that it wouldn't be a good idea. Usually we fill it with gum, magazines, gift cards and some fun stuff. I was confused.
It was quickly cleared up as I opened up a stocking full of items labeled TROJAN. Yes, TROJAN. I now understood why he didn't want my dad to see. My mom, ok, but my dad, that would take it to a whole other creepy level. So, I guess it's time to spice things up. I'm not too sure about cherry and chocolate.....my sister and my mom just gagged!! :)
Grandma and Brinley <3
I love this post!
How I Told My 7 Year Old Son He Has Down syndrome! :)
A couple of weeks ago, I was interviewed by a local television station. The day they were coming to our house, I woke up at 2:48 in the morning, convinced I was going to have an anxiety attack. Part of the interview was to talk about Down syndrome.
Why did I wake in such a state? My husband and I had never told our 7-year-old son he has Down syndrome.
It isn't like the subject hadn't come up. But how would it help him to know at this age? Can a child -- any child -- understand what that means? Honestly, I find most adults, including educators and other professionals, know next to nothing about Down syndrome.
The other thing -- how would I do it? I can't adequately explain how Curious George is entrusted to navigate ships into New York harbor or why the tediously boring Caillou seems popular. How could I explain Down syndrome?
But, now I had to. What if some kid's parent from school saw me on TV? What if they talked about him having Down syndrome? Then, what if that kid said to our kid at school the next day, "So you have Down syndrome, huh?"
My heart was racing during the next couple of hours as I lay in bed trying to turn this thing in my mind. Finally unable to contain myself, I decided to wake my husband.
"We have to tell him today!" I yelled, sitting upright in bed.
"What's happening?" came my husband's voice from under the covers.
"Wake up! We have to tell him he has Down syndrome!" I said.
"OK," said my husband in a resigned, tired husband way. At this point, I know he does not actually have any idea what I am talking about, but he has heard me in this we-must-do-something state before, so he then said what he always says -- "Settle down," -- followed by, "What time is it?"
"I'm not sure," I lied.
"Oh, God. Give me 30 minutes. Make coffee."
After much whispered debate, we decided we would both take the day to figure out how to tell him. Very thoughtful planning on our part. Teamwork would be our key to success.
My husband left for work. Then I told our son on my own.
The thing is, I wanted to be Team Us, but I could not manage my anxiety. I believed the only way to not have an anxiety attack was by telling him that morning.
I am convinced if Little Ricky had Down syndrome, Lucy would have done the same thing after Big Ricky went to the club.
As I watched our son from the doorway of the den, I thought, this is the last minute he doesn't know he has Down syndrome. He was watching "The Magic School Bus" and eating waffles.
I walked in the room swinging my arms in a Julie-from-"The Love Boat" sort of way.
"Hey, guy, dude, little man, buddy..." I trailed off.
"I'm going to turn the TV off for a bit so we can talk."
Like all males when notified they need to "talk," he put his head in his hands and yelled, "No, no, no, no. Noooo!"
As I sat on the couch and looked thoughtfully at him across the room, I realized I had no concrete idea of what I was going to say.
I am not sure where the following came from. It may have had something to do with seeing his collection of Avenger action figures on the floor. Also, a couple days before we had all gone to Thor, The Dark World. In fact, our son had worn his Thor costume to the theater.
"Have you ever heard the words 'Down syndrome'?" I asked.
"No," he said. How's that possible, I thought?
"OK, OK. Have you ever felt like you were different from other people?"
"No," he said in an almost indignant tone. This shocks me. It that true?
"OK. Well, I want to tell you something. Yeah... you... have a super power. It's called Down syndrome."
My son looks at me wide-eyed and makes like Mr. Universe with his biceps.
This isn't so bad.
I continued, "Down syndrome is an extra chromosome in your body..."
He started feeling around his mid-section.
"You can't see or feel your chromosomes, they are so small." I am realizing the scientific route is too abstract.
"See, Down syndrome gives you almond-shaped eyes and a terrifically adorable flat nose. And it gives you super powers. Some of your super powers are big love, photography and... um... um... farting. It also made you a little small, talking and being understood is hard for you right now and learning some things takes more work."
Auntie and Brinley :)
I saw by the nodding of his head and smiling that my son accepted all of this information. I am his mother and at age 7, that still pretty much means I have credibility.
The physical characteristics and the cognitive challenges are not debatable. The fact our child is very loving and has an obsession with farting is likely more typical 7-year-old kid, particularly boy, stuff. However, his photography is a gift from somewhere. I am feeling my way here in a world that does not provide a manual for how you tell your kid they have Down syndrome.
I leaned forward and said, "Not everyone sees your super power, so some people just see someone who needs help for some reason."
This piece of information resonates and my son starts laughing.
I continued, "The thing is, Daddy and I always wish we were better parents, but we never wish you didn't have your Down syndrome super powers."
That is absolutely true.
"Magic School Bus?" he asked, directing me to turn the TV back on with a waffle-crusted fork.
"Of course!" I said, relieved. And I was relieved. My anxiety was gone.
I emailed my husband to tell him what I had done. I included: "He's fine. Now it's like a lifelong conversation."
This is why my husband is my husband: He wrote back: "It's OK. You did good."
For almost four years, I have written about our family's experiences, including Down syndrome. My contention has been our son is not that different from "typically" developing peers. My husband and I do not see Down syndrome as a defining characteristic, but one of many our son embodies.
Does that mean our son has a super power? Maybe. Maybe we all do. This is what I do know about his having Down syndrome: it cannot just be about what he cannot do. Down syndrome is not objectively bad. For our family, Down syndrome is something to be respected.
Kari Wagner-Peck authors the blog atypicalson. She is a writer and Down syndrome advocate/activist. You can find her at: www.atypicalson.com