29 March 2014

It's Time for a Re-post! :)

I had a thought....my posts lately have been a bit on the down side. What's happening to me? It's time to get back to happy, joyful, crazy Krista. I decided to re-post and share my mommy group again. I got some great feedback on this one and smiles are good on Saturdays! If you want to smile then have a little down moment, continue reading.....

 
 
James decided to go to bed at midnight, I had no idea. I had to get up at my normal 2 hour interval to pee, go into the bathroom and there is my 6'4" husband laying in cold water in the tub reading his book! He looks at me "HI BABY!!"  I don't think I said too much because I like to keep myself in a sleepy state! Went back to bed and fell asleep.
Well, 2:20am rolls around and James flies out of bed...
J - "Where's Brinley?"
K - "What?"
J - "Where's Brinley?"
K - "What?"
J - "Where's Brinley?"
K - "In her crib."
J - "Oh yeah."
K - "Are you having a nightmare?"
J - "No, I just couldn't remember where she was...."
K - "Hmmmm....ok."
Took me 45 minutes to fall back asleep! Boo.




Yesterday, I decided to check out some mommy and tot groups in the city. Brinley loves music, so I thought maybe I could find a good one for her, before baby makes her grand debut!
I found a couple and I had this flash before my eyes.....some of you have messaged me and think it's hilarious that I did this...no, no...it's just my imagination, what I think would happen!!! It may make it less funny now. ;)

I show up in my Lulu lemons, all stretched out in the front to accommodate my ever-growing belly, walk into the house and find myself surrounded by a dozen women, drinking their short, half soy, half milk with cream mocca vanilla latte with splenda and decaf, skim, extra hot wet caramel latte with whip' with a triple shot of caramel macchiato with skim milk, light foam, and extra caramel sauce lining the sides of the cup no whip but a pinch of nutmeg in a Venti cup, and an extra shot of vanilla. ALL NON-FAT!
I walk in and I can see that some of the women gave birth the week before and they are sporting their skinny jeans with no spanx. I say hello and sit down because I can't run now, I'm stuck in this hell!
The host of the party has provided some delicious canap├ęs for all of us. A piece of cucumber on half a melba toast as well as cherry tomatoes that were organically grown in some place far, far, far away. If you are still hungry after your treat, you can grab a handful of chia seeds to top it off. I sit, drinking my Tim Horton's coffee because I like fat in my coffee.
One of the women then asks me what I do for a living. I feel confident because I can actually say that I am a stay at home mom, so they will think I have money. Then the next question, but what do you really do? I am proud to be a teacher. I AM A TEACHER. Then I hear from a few of them that they think it's cute and ask if I needed to go to school to become a teacher. They giggle.  I swear under my breath. I can't leave yet. They ask me what my husband does and I tell them that he locates underground utilities for oil and gas companies. I hear again that it's a cute job but does he come home with dirty hands??!??? He sure does. They giggle.
I ask them what their husbands do for a living...I don't know why I ask because I am just digging a big hole, actually I wish I was in that hole and somebody was pouring the dirt on top of me. One woman tells me that her husband is the Chief of Neurology at The Foothills Hospital. I ask if he needed to go to school for that?? She glares at me.
The other woman tells me proudly that her husband is a plastic surgeon. I ask her if he has performed all of her surgeries? She glares at me.
I think it's all going smashingly well so far. It's then time to go for a walk to check out all the million dollar homes that are for sale in the community. All of their 2000 dollar strollers are lined up and colour coordinated outside of the house. I head to the car and grab mine, unfold it and plop Brinley into her 200 dollar stroller that only has one drink holder. I notice that my new friends each have 6 drink holders and an IPod docking station on their strollers. Oh, and look, they also have remote controls so they can program their stroller, they don't even have to push! That's sweet.
Go for a walk and pretend that I love the homes and decide to tell the women that we are planning on renovating our place sometime in the future. Like get a new towel rack or something. The women share their renovating stories, they had to stay at the Ritz while the house was completely gutted and they hired Nate Burkus to decorate the entire house. I LIKE MY TOWEL RACK!
The walk is over. Thank Goodness!
We all head back to our vehicles. Well, look at that, they all drive luxury SUVs. I put Brinley into her car seat, fold my stroller and hop into my SUV, my Chevy Traverse! I fart and head for the nearest McDonald's.

I'm not too sure if I have a pre-conceived notion of what mommy groups entail.... :)

Adele's Over the Rainbow Baskets - Down syndrome LOVIN





 

28 March 2014

Am I Messing it all UP?

 
BEAUTIFUL <3

Well today I hit a wall, not literally, although that is something that I would do. The day started off just fine, I chatted with my dear friend Cat, she informed me that everything is all set up at the PLC for Adele's Over the Rainbow Baskets. She spoke with the manager of Labour and Delivery/Postpartum and the manager told Cat that she would embrace the idea of the baskets. Cat was so excited that she was crying on the phone with me. She has been such a supportive and kind friend throughout our journey. <3


Taking a nap on daddy :)

The girls and I have a routine that we try to follow every weekday. We get up, Brinley gets her milk, we all hang out, Adele gets her bottle and Brinley has breakfast, then it's nap time at around 11:00am for Brinley. I usually have their outfits picked out the night before, so we can get dressed and out the door. I didn't do that last night. I decided to put Brinley in her crib and pick out some clothes for the girls. I should have known better. When I went to leave Brinley's room, she went into the ugly cry. I picked her up, had some snuggles, and tried again. Nope. At that moment, I started to feel a bit overwhelmed. I don't know if it was  because our schedule was thrown off or that I knew that Brinley would not get a nap today since we had Music Therapy in the afternoon? I brought her into our room, Adele was already napping and Brinley sat on the bed and played Endless Alphabet while I showered. Then I had a thought, I don't follow the 'nap rules'.....I don't put Brinley down at 1:00pm which is normal for her age. I put her down in the morning because we have so many things going on in the afternoon. Am I totally messing her up? I should be following the 'nap rules.' I'm sure that all my friends do what the books say to do and I'm the only one screwing with my child's sleep schedule. Brinley needs a morning nap still. She's tired. She would also take an afternoon nap if we weren't so busy. AHHHHHHH!!!!!


So HAPPY!

When I got out of the shower, I felt I hit a wall. I was standing in front of the mirror and I had tears in my eyes. At that moment, I let too many thoughts rush in. I had two hours to get ready, get the girls ready, feed them lunch, out the door and on our way to music. Yes, I realize that two hours is enough time to get it done, but I felt that I needed more time. I needed to make sure that Adele got her cereal and Brinley needed lunch. Then I had another moment. I feel that James and I aren't doing enough for Adele. I feel that we need to be doing more exercises. I feel that we need to feed her more solids. I feel that we need to focus more on Adele. I felt lost. I feel that we need to be more consistent. I feel that we need to set up a schedule. We need to do exercises at certain times and if we write them down, we will do them, we will get them done.


NO MORE SNOW!!

I feel so lost sometimes when it comes to Down syndrome. It's not that I forget that she has Down syndrome, it's that we had it one way with Brinley, where we just loved her and fed her and changed her. It was 'normal.' It's not 'normal' with Adele. It's a whole new world. I feel that sometimes we don't know what we're doing. Our lives are consumed with writing her feedings down, what she ate, how much, what time, a pee, a poo, a spit up. Oh no, her poop is solid again since we started cereal, so do we up her prune nectar? Is she stronger? Is she less floppy? Is her breathing sounding better? The hearing clinic isn't calling me back. I've called them three times. Don't forget to call for her next vision appointment. Don't forget that she has her respiratory appointment next month and that they need to give us all the forms for the flight to Disneyland. Don't forget to call Medigas and get the cylinder that we need for the flight. Don't forget the tegaderm for her cheeks.




Why haven't we watched all of the DVDs for Signing Times? We need to learn more signs. Wait, there's another thing, the OT said that although Adele is extremely strong, like surprisingly strong, we need to work on strengthening other parts of her body. The OT mentioned that she didn't want to deflate my bubble.....deflate my bubble? I don't have a bubble to deflate. We just work on things, we work and worry. We need to work more on her core. Adele is going to end up realizing that she can move around while she's on her back and she'll think that it's ok to crawl and move around that way. She needs to be on her tummy and get those arms up front.
I sometimes feel that I need somebody to take my hand and guide me through all of this. I need somebody to call me every day and tell me what to do. Are we missing stuff? Should we be doing more? Are we giving her every opportunity to succeed? Are we doing all that we can now? Are we messing it all up now and she won't walk until she's 5? I DON'T KNOW!!!!

Sigh

I need to know that others are in the same boat as us. I need to know if you feel that you just don't know sometimes. I need to know if you feel overwhelmed by appointments and making sure that you stay on top of blood work and tests. I try so hard to take things day by day, but it's impossible. I think about the next appointment, the next test, the future.

I'm trying so freakin hard with these kids to give them all the love, encouragement, support and joy that I possibly can give but I sometimes feel that I'm messing up. I could do more. I should be doing this....that....going here...going there....saying this....saying that...
And then the added stress of having a little one with special needs. I don't ever regret having Adele, she has made our lives complete. She has made this family complete. Being a parent is hard work. Being a parent to a child with Down syndrome really tugs at your heart strings. It's not the 'normal' that we are used to. It's a journey. A journey filled with a lot of questions. A journey filled with so many unknown paths. I want to be on the path that will allow Adele to flourish. I want to be on the path where I am smiling and breathing and taking in all of the wonderful moments. I want life to be easy for Adele. I want her to shine. I want her heart to be full. I want her journey to be one of beauty and love and hope.



23 March 2014

Down's Babies....



Life has been pretty busy lately, with appointments, friends, World Down syndrome Day, trying to get Adele's Over the Rainbow Baskets all organized and trying to keep a house organized and clean!

I put a phone call into one of the hospitals, the NICU in Calgary, so that I could get their fax number and explain the purpose of the baskets. The conversation went a little something like this...

K....Hello, I just wanted to explain a proj...
Rude lady....Who are you?
K....I just wanted.....
Rude lady.....Who is your doctor?
K....I am trying to expl....
Rude Lady...What is your name?
K...This is what I am trying to explain to you.
Rude lady....Who is your doctor?
K...I have started a project, to help bring some comfort and joy to families who have a child born with Down syndrome.
Rude lady...We don't have any Down's babies here.
??????????????????
K....Our little girl...
Rude lady...We don't have any Down's babies here.
My voice is now just a little bit louder and I am getting mad.
K...Our little girl spent 42 days in the NICU, so I know that there is a good chance that little ones born with Down syndrome will go into the NICU.
Rude lady...We don't have any Down's babies here. I will grab the unit clerk.

As she was putting me on hold, she made sure to say into the phone "OH MY GOD!!"




New person answers the phone.....
K....Is this a nurse?
Nurse...Yes.
I explained what had just happened on the phone and she apologized profusely for the clerk's behaviour. She loved the idea of the baskets and was eager to pass it onto her manager.

I got off the phone and I cried to James. I was so upset by the words and behaviour from the unit clerk. I think I was in shock too. This is the first person who parents talk to when they call the NICU. They have a baby in the NICU. Who are you, that you think it is ok to speak to somebody the way you did? I was appalled. This is why I was so upset. I am very sensitive when it comes to my children, and when you shout that you don't have any Down's babies in your NICU, I took it as a total lack of respect for my child. First of all, you should know how to properly answer the phone. Second, you should know the correct medical terminology. Do not call any child a Down's baby. They are children first, our children.




World Down syndrome Day! I went into the local elementary school last week, almost every day and gave presentations for nine groups of students on Down syndrome. I think that it went really well. I love the honesty, the naivety and the love that children have for babies.
One story from one of the boys touched my heart. While I was presenting to the grade five students, I asked if anybody knew the word that sometimes people with disabilities are called. One little boy put his hand up and he told the class that the word is 'RETARD.' He then went on to tell us that this word was used long ago and that it was an acceptable word to use, but not any more, it is a hurtful word. He then proceeded to tell us that his brother is autistic. His eyes filled with tears. My eyes filled with tears. The teachers in the room, their eyes filled with tears. He explained that his brother has been called retarded. More tears. I asked him if it hurt his feelings when his brother was called a name. He nodded his head. More tears. I could see the pain in his eyes and the hurt in his words. It was a moment, a moment where the whole class was silent. The whole class listened and I could see that the students realized that words can hurt. We don't always understand that when we use certain words, we are hurting siblings, friends, aunts, uncles, grandparents, moms and dads. You are not just hurting the one person who you are using the word against, it's a whole community.
It was a moment that taught us all that we need to be more aware of our words and actions.


World Down syndrome's Funky Sock Day!

Something else that was beautiful was when I spoke to the Pre-K classes. When they looked at Adele, all they saw was a baby, a cute baby. They don't see Down syndrome. They were excited to touch her fingers. They were excited to show love. They told me repeatedly that she was so cute. I realized that we need to start educating our children at a young age about differences, about how to be a good friend to others. If parents are not speaking to their children about how to be a respectful and kind individual, we are failing as parents.




It was a great week. It felt good to make a difference. It felt good to show my community that I care about our children. I believe that we are all given our children for a reason, there is a purpose. We were given Brinley and Adele and it is up to us as parents to encourage them to make a positive difference in the world. It is up to us to help our girls discover their gifts, talents and strengths. It is up to us as parents to show our girls that they can reach their full potential, no limits. I will continue to advocate for both of our girls and to reach out to others and hopefully make this world just a little bit better. Educate. Advocate. Awareness.


We are trying to lose the soothers....working out smashingly well ;)
 
 
So silly!
 
Sweet princess <3
 

 
 
 
 
 



13 March 2014

Terminate?




Just a couple of thoughts for the day....

Thank you for LIKING and for SHARING Adele's Over the Rainbow Baskets - Down syndrome LOVIN. Spread the word.

The first thing that I wanted to touch on is that North Dakota is the first State to ban abortion because of Down syndrome.
I know that this made a lot of people happy, possibly a big cheer and maybe a few comments.

I am really sitting on the fence with this one. The day that we found out that Adele had Down syndrome, we knew that we couldn't do it. We couldn't possibly raise a child with Down syndrome. We didn't know how to be parents to a child with specials needs. It would be way too difficult. Nobody has the right to judge either of us. If we decided to terminate the pregnancy, that was our choice. I shared my thoughts and feelings with close friends after our appointments and all I asked was that they supported whatever we decided. Our friends did not judge. They may not have fully agreed, but they would support us.




I received  the call from the hospital on a Saturday that we were scheduled for an induction that day. I was under 18 weeks pregnant. I wasn't informed of the appointment, so I was taken off guard. I couldn't do it. James and I needed to see our baby at the 18 week ultrasound and we needed to see that she had a good heart, that she was healthy, we needed to see her, perhaps one last time.

After the 18 week ultrasound and seeing this perfect baby, we knew that we needed to continue with our journey. I told James that I couldn't imagine going into the hospital, getting induced, delivering a baby and going home with nothing but a broken heart. We knew that she was ours and that we made her, we loved her and we knew that the addition to our family would be welcomed by the entire family. It was funny because that day, after the ultrasound, there was this sense of comfort and ease and happiness. We sat in the room waiting to discuss everything with the doctor and we giggled and we smiled. It felt like a weight had been lifted. I don't know if it was because she was healthy or because she just captured our hearts. It was a really great moment.




After the ultrasound, we stopped by my parent's house and we discussed with them what we were planning. The plan to continue. I actually wasn't too sure what they would say to us. I didn't know if they thought that maybe we couldn't handle having a child with Down syndrome. I didn't know.
My dad looked at me and told me that they were her grandparents, no matter what. They would love her no matter what. Another exhale.

It wasn't all butterflies and roses during the remainder of the pregnancy. Adele had a couple of cardiac concerns, which later in the pregnancy resolved on their own....another exhale, my blood pressure was elevated, the emotional toll was almost unbearable at times. It's a very different feeling when your baby is growing inside of you. It is such a world of the unknown. It's scary and overwhelming at times. You hear horror stories from others and Google can fill your mind with statistics from the 1970s. It was a very long 35 weeks, but we did it. We did it with a lot of support and love.




This brings me back to my initial comment, banning abortion.
Who am I to judge what you and your family decide? Who am I to tell you that you are killing a human being? Who am I to tell you that you can do it? Who am I to tell you that if you terminated, you would be making a huge mistake? We were there. We were considering termination. We just knew that it couldn't be done, raising a child with special needs. Two educated, established people, couldn't do it.
You are telling a woman that she can not decide what she wants to do with her body. You are telling a family that they have no choice but to have this baby. Is that fair? If you tell a woman that she must continue with the pregnancy, who's to say that she doesn't compromise the pregnancy? Who's to say that she doesn't try everything possible to end the baby's life or even her life?  What if there is no connection, no bonding? This is a really tough subject and I think that it is up to the parents to decide what they think is best for their family. Am I a bit disgusted by the termination numbers? Absolutely! 90% of women terminate. Maybe instead of setting up these kinds of laws, set up a law that the family will be required to receive genetic counselling, resources to access, then allow them to decide. I understand that between finding out the diagnosis and the allowed time to terminate, you don't have too many weeks, but you have enough time, with the appropriate resources, you could make an educated decision, one that is best for your family.

Most families, the majority don't find out until after delivery. Imagine being told after you have delivered that your perfect baby has Down syndrome. You were se excited to see your perfect child, it was all planned out, private schools, post secondary, the hopes and the dreams, all flushed down the toilet. But wait!!! You see your baby, in the flesh and you melt. Your heart feels full. You see your miracle. There is the connection. There are some worries and concerns, but your baby is here, in your arms. Maybe there will be private schools. Maybe there will be post secondary. Maybe she will find the love of her life. Just maybe, life will be great!


The first time we met. A little tear running down my cheek.


When you are pregnant, you don't always feel the connection. You don't have a clear idea of what baby looks like and to some, baby is not real until after delivery. It can be easier to make the decision to terminate, because your baby is not in your arms. Find a good, healthy support system. Surround yourself with those who love you.

It's not perfect. Life is busy. We have lots of appointments. We still worry. We still have concerns. We still have fears. We made the best decision for our family.


Happy 2nd Birthday beautiful Brinley! xo

3 March 2014

Adele Has Down syndrome!

Well, I'm back! Kelsey took over for a while and I am so thankful that she shared her story with all of you. She is an incredibly strong and beautiful woman.

Things are going pretty good here. Adele had her eyes checked and so far so good except that they cross a bit and then go back out. I was told that they would probably straighten on their own, if not, we will be getting cute little pink glasses. :)
We did our overnight oxygen test and I thought that she flunked, big time, but that wasn't the case. Adele's average was 93 and for her to be off of her oxygen, her average needs to be just above. We are just about there! I'm ok with her staying on oxygen at night because it is helping with her development and that is a good thing!

She is gaining weight and it's been quite steady. We are now over 12 pounds and she has little chunky cheeks! I love them! We started cereal and so far that been a success. I worried so much about feeding her solids, I thought that she would choke or just wouldn't like the texture. We've made her cereal runny, a little thicker and now we are pasty. Next, we are going to get going on peas! I'm telling you, I truly had no idea that my life would be consumed with feedings, intake, poops, appointments and more appointments. It's crazy how my two little girls differ so much but then on the other hand are so similar. We are so blessed that Adele's health has been great. We have had a few little bumps but I know that she has a good heart and no GI issues right now. It's crazy being a parent to a special needs baby. Is special needs the right words? A baby with Down syndrome? A little miracle? It's a lot of work and time and worrying and appointments, appointments that I had no idea that I would have to go to....I didn't know that she would need to go to the vision clinic, hearing clinic, get RSV shots.....and on and on and on. Nobody really told me that we would be doing all of this, but to be honest, going to these appointments has brought even more great people into my life.

I still have moments where I go "Adele has Down syndrome." I think about school......a lot. I think about her peers and her teachers and if she will be respected and included. I think about whether or not she is toward the mild end of the spectrum or if she is more moderate. I guess we won't really know until she is a bit older. When I took her to get her thyroid checked, the lab tech told me that Adele was mild. I kind of giggled a bit inside but also it felt good to hear it, but I also know that you can't tell just by looking at a baby whether or not they are mild or moderate. Right?? I don't know. There are just so many things that I don't know and part of me is happy that when things just sort of pop up, I do a lot better. Does that make sense?

When I took Adele for her immunizations, the nurse asked me if I went out with Adele, like leave the house. I may have mentioned this in a previous post, but I've thought a lot about it. It has never crossed my mind to not go out with Adele. I am proud to be able to tell others about our journey. I am not embarrassed that she has Down syndrome. I have never been ashamed or not want to show her off to others. I am so proud of her and her sister. I think Adele is just adorable and she has a beautiful personality. She is calm and sweet and funny, yet she is very fiery and spicy, just like her father. ;)
When we were at ACH for an appointment recently, I was in the elevator with another lady. She looked over at Adele and said how sweet she was and for the first time I heard "oh, she's a little Down syndrome baby." I almost choked. I don't know why I almost choked. I have never had anybody say that to me before. Ever. Nobody has ever walked up to me and said anything besides, how cute and sweet Adele is and maybe asked why she was on oxygen. All I said was "yes, yes she does have Down syndrome."
She then proceeded to tell me that she adopted a little boy years ago and he has Down syndrome.
Ok, she is a part of my club. I was ok then after knowing that she has a child with Ds.
So, I am not embarrassed or ashamed, I am proud but why does it bother me if somebody says that Adele has Down syndrome? I know that she does...I fully get it. I am not in denial. I accepted this long ago. I just don't want people to say to me "Oh, your little girl has Down syndrome." Feedback??
I guess it would be the same with Brinely, if somebody came up to me and said "oh, you have a typical child." That would be hilarious. Maybe it's just because I think of my children as just my children and nothing else.

This leads me to my next thought....I am so happy that many companies are now including all children in their ads. Target, Infantino, Miss Maven and many others. It is about time that companies see the beauty in all children. It's about time that we make a shift, a shift in the right direction, a shift toward being inclusive. I am happy.

Last thought before I leave you with a bunch of cute pictures!!!

Adele's Over the Rainbow Baskets - Down syndrome LOVIN has been doing awesome. We are over 4000 LIKES so far and still growing. We have enough beautiful items that have been donated by friends and family, to make at least 20 baskets. They will be filled with so much love, as well, I have included a list of resources that the family can access once they are discharged from the hospital. It's such an exciting project, with donations coming from all across the globe! Making a difference feels great! If you haven't already liked Adele's page, click on the link above and LIKE LIKE LIKE!! We can change the world together! :)

Bright eyed! :)

So cute!
 
Leave her for a second and she gets all acrobatic!
 
7 months :)
 
HAPPY!
 
Adele's Baptism <3
 
Such a big girl :)
 
Booted her sister out of the Bumbo and took over!
 
Cereal!
 
Lookin' cute!