THE ABSOLUTE MOST RIDICULOUS THINGS THAT PEOPLE SAY TO PARENTS WHO HAVE A CHILD WITH A BEAUTIFUL GENETIC GIFT.....

It's been a rough few weeks in the Down syndrome world. We have lost three, young and beautiful children.
I wanted to write about one of the little girls, Annie. Sometimes the internet and Facebook drive me nuts and other times, I love what it has done for our family and for others.
Rumours start floating around and I usually jump the gun.
I had read that Annie was denied a heart transplant because she has Down syndrome. I don't know if this is truly accurate information. I have heard many stories in the past few months, where a child was denied a transplant because they have Down syndrome. I have read articles from Canada and from the US, but it seems to be more of an issue in the United States.

My opinion....

I have two children and both girls should receive that exact same medical care and attention. I will not tolerate the medical profession telling me that because Adele has Down syndrome, she is not eligible for any kind of transplant. Adele is a human being, a valued life and she deserves the utmost care and attention, should she need it. She has the right to life, she has the right to be taken care of and should anything ever happen to Adele, she deserves to be taken care of just the same as somebody without Down syndrome.

This truly infuriates me and to be honest, when I first read that a child was denied a transplant because of Down syndrome, I thought it was false. There is no way that because a person has a beautiful ability, they would be denied a transplant.
We, as a community, need to come together and fight this, we need to take a stand. When I say community, I mean the whole world. Every child, every human being, deserves the same medical care.

Playing in the rain!! :)

I understand that if a child with Down syndrome has an underlying medical condition and their body will reject a transplant, I understand why they wouldn't be a candidate. I get it. I know that a person without Down syndrome, who has other medical concerns, would also not be a candidate. I just need to make sure that doctors are not discriminating. I need to know that hospitals are not discriminating. I need to know that every human being will be treated as equals.

James and I are the girls strongest advocates and we will fight for both of them, we will make sure that they are loved equally, respected and that they are viewed by others as equals, I can't stress this enough.

I think that in the future, I am going to write a book.....it will be called;
THE ABSOLUTE MOST RIDICULOUS THINGS THAT PEOPLE SAY TO PARENTS WHO HAVE A CHILD WITH A BEAUTIFUL GENETIC GIFT.
Please feel free to submit your own ridiculous lines.....

- 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.
- 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 get that in most instances, it comes from a place of misunderstanding. I love to be the one who explains and educates. I love when people ask questions, I love when I get to explain how our world is, some ups and some downs, but a whole lot of love. The only time that it really bothers me, is when somebody is intentionally hurtful. Some of the above are to make you giggle and have a little chuckle. Before Adele, I know that I would have said some of these, so please take this lightly. I am not bashing. I want others to ask questions, I just have no tolerance for disrespect and unkind comments.

When we try to be a big girl and not take a nap!

A Perfect Extra Chromosome - Awe-Inspiring Miracles

Hip and Cool and Awe-Inspiring.....

The days seem to fly by lately. We haven't really been all that busy and part of me feels like I'm going stir crazy when things aren't as hectic. I don't know if that makes sense. Mornings are for; getting up, getting ready, feedings and naps. We leave our fun stuff for the afternoons.

I've taken the girls to Tommy K Play a few times now and it's a really great place. The first time we went, it wasn't busy, which made Brinley happy. She needs to get familiar with a place and take in her surroundings before she feels comfortable. There were a few kids and once Brinley felt safe, she started to interact with them a little more. It was a fun afternoon, no injuries, no tears, just fun.
I decided to go back again, but this time it was raining out, so I figured that it would be a little busier. It sure was.
We paid, got our bracelets and went to sit down. The only chairs that were available were behind a support beam. I took two chairs, one for the diaper bag and my purse and one for myself, Adele and Brinley. My plan was to snuggle with Adele while keeping Brinley in view. We sat beside the hip moms, the ones with the Peg car seats, the skinny jeans, the coiffed hair, the pretty babies, you know, those moms.

I set Adele down and figured that Brinley would be thirsty....ok, I could leave Adele for a minute, I can see her from the drink counter. I had the clip undone just on her chest but she was still buckled up, so she was secure.
Brinley and I made our way to the counter, I was watching Adele. I could see one of the hip, cool, trendy moms get up and jump over to Adele. AWESOME!!!!
She grabs Adele and starts to walk over towards me.
"Is she your baby?"
Well, I just walked past you, around 30 seconds ago, the one with the car seat (Graco), the diaper bag, the purse, the toddler, you know, me, the one who is sitting beside you?
"Yes, she is mine." I was feeling a little sheepish and neglectful. "Did she arch?"
"Yes, she almost flipped herself out."
I kind of doubted that considering she was still clipped in, unless my child is Houdini! Wouldn't that be cool!!
"Thank you for bringing her to me."
I take Adele and realize that she has a big, stinky dump.
So now, the trendy, hip, cool mom knows that I neglect my children and I don't change their diapers. This is going well.

Wearing red to support the RCMP

I head back with my two children, to our chairs, behind the beam.
Brinley wants me to climb through the tunnels with her and go down the slide. My first thought.....my ass won't fit on the slide and my second thought....I will get stuck in one of the tunnels and trendy, hip, cool mom will have to rescue me. She will call Child Protective Services and my day would soon be ruined. Mind you, if CPS came and took my children, I could go to Starbucks, it is so close, I could have a coffee, check my emails, pretend that I have a quiet and peaceful life. CPS would babysit my children for a few hours, do a background check and realize that I was probably just having an off day. I would be all rested and rejuvenated by the time they returned my children.
Hmmmm.....something to think about. :) (Please know that I am kidding for those of you who don't get my craziness)
Anyways, I had a baby that needed me, so Brinley would have to find some playmates to go through the tunnels with her.

She was more comfortable on the second day and actually went up to several of the kids and had a 'conversation' with them. It was pretty sweet.
The hip, cool, trendy moms would smile at Adele and comment on her cute outfit. I would smile back and continue to eavesdrop on their conversation. Nothing interesting going on, no real gossiping, such a disappointment.

I was trying to keep my eye on Brinley but it was difficult, the damn support beam. I would flip back and forth in my chair, looking like a dork, but whatever, I'm hip too....sometimes.

James showed up after work and climbed through the tunnels with Brinley and went down the slide. I was safe.

We went back to Tommy K Play today. The girls didn't have good naps and I was feeling frustrated and was losing my patience. I wanted to get out. The house was a mess and I didn't care, I needed to get in the car and go somewhere.
After we had been there for a while, one of the moms came up to me and asked if I was Krista. I was worried that I was being served. :)
Her name is Kandis and she reads the blog. She said that she has been reading the blog since the beginning. She got teary as she was talking to me and told me how much she loves it and that she checks every night to see if there is a new post. I got teary too, but a happy teary. How nice that she would come up to me and let me know that she appreciates what I am doing. It was a happy moment.

Brinley, Adele and I went back to our comfy chairs and while sitting there, another beautiful mom came up to me and asked if I was Krista. She told me that she follows Adele's Facebook page.... Adele's Over the Rainbow Baskets - Down syndrome LOVIN' :)
She loves the pictures and keeping up to date on the girls. Shauna told me that her son is autistic and that she can relate to some of the fears and struggles. We are all on our own journeys and it is something to always keep in mind.

I mentioned this in the last post about not being so quick to judge. There was a lady in a full burka today at the play place. All that was showing were her eyes. It is not a familiar site to any of us. Brinley was scared and a bit teary as she has never seen this before. Her little girls would come up to Adele and chat with her and touch her face. I'm ok with this because this is what kids do, they love babies and they love to touch. My first thought was that she probably didn't speak English and then I thought that maybe she wasn't allowed to talk to me. Her husband was there in western clothes, talking on his phone the entire time. I was sure that he made the rules. I thought about my last post and I wasn't going to pre-judge. I asked her how old her girls were and she asked me the same question. She could see Brinley hiding behind me and then she would peek around me to catch a glimpse of something that she didn't quite understand. I told her that Brinley is pretty shy and the kind woman told me that Brinley is probably scared and that she hasn't seen this type of dress before.
She was right.
I asked her how long she has been in Canada and she told me that they have been here for five years and that they came from Pakistan.
She was kind.

LOVE my new pyjamas!! :)

It is so important to me that my children see me as a kind and loving person. We accept people for who they are and we need to get to know others. Ask questions. Don't judge.
It was a really great moment.
Today at the play place, I met three amazing women all on their own journeys.
Take the time to meet people. Take the time to learn about their journeys. Take the time to teach your children that we are all unique. We are all special. We all have a story.

Lastly.....

WORLD PREMIERE!!
Adele's Over the Rainbow Baskets - Down syndrome LOVIN' presents - A Perfect Extra Chromosome - Awe-Inspiring Miracles.

This is a video about inclusion of ALL children, of ALL abilities and ALL walks of life. It is filled with love and acceptance and beauty. Please share this video with the world! Let's go viral!
Thank you to Brian Campbell for creating our video. Many hours and a lot of dedication went into the making of the video. We are forever grateful. My shameless plug for Brian - He is a member of the band Blades of Steel! They are on ITunes and they are pretty awesome.

A Perfect Extra Chromosome - Awe-Inspiring Miracles

Sometimes our babies just need some snuggles <3

Passing Judgement.....

I went out for lunch today with my friend, Merilee. She is so incredibly beautiful, inside and out. She makes lunch an easier process for me because she always takes a kid! :) We went to Moxies and had a great lunch and a lovely visit.

This is what happened at lunch time....

A mom and her two children came in, they were both teenagers. They sat at a table close to where we were seated. I glanced back and looked at the two teenagers, they looked so unhappy. At this point in the lunch, Adele was yelling and screaming, not because she was upset, but just because she thought that it was a good time to yell and scream. :)
The mom and her children moved tables.
I was kind of upset and thought that it was rather unnecessary and kind of a bold move.
I said to Merilee that I was kind of surprised, as was she and we both commented on how miserable the kids seemed to be out with their mom.

The waitress came back to clear our table and I asked her if they moved because of Adele. She told me that they moved because both of her children are autistic and her daughter is extremely sensitive to noises.
I paused.
Merilee paused.
We both felt bad for judging.
I had to take Brinley to the washroom to change her and on our way back, I decided to stop off at their table.
I told the mom that I was sorry that Adele was being so loud. She then proceeded to tell me that both of her children are autistic and that her daughter needed to be in a quieter place in the restaurant. I shared with her that Adele has Down syndrome and I am learning new things every day about having a child with special abilities. I completely respected their decision to move and was appreciative that the mom took her time to explain her daughter's sensitivity to loud noises.

The mom reassured me that there was no need to apologize and that it was all ok.
I decided to apologize to the son. The daughter kept to herself and played on her IPad, I didn't want to interrupt or make her feel uncomfortable. I told the son that sometimes Adele yells and she gets pretty loud. He told me that she was loud and he thought that maybe he would have to go to the car if she continued and that Adele needed to stop yelling and screaming. It was funny.
I like how he engaged with me and I had a feeling that he knew he was funny. I also felt this connection with him, there was something very special about this boy. I wanted to give him a hug or touch him, but I didn't want to overstep my boundaries.
I left them to eat their meals and apologized to the son and daughter once again for my screaming child. :)
She wasn't misbehaving, like I said before, she was just excited to see Merilee and she was enjoying her snuggle time.

Tried to take a groupie....too funny!! :)

I went back to the table and talked to Merilee about the conversation that I just had with the family. Merilee works with at-risk youth and has a heart of gold. She enjoys what she does and has such a passion and devotion for her students.

We talked about what had just happened. We both judged without knowing. We thought that they moved because Adele was loud. We commented on how the kids looked so unhappy. We passed judgement before knowing their story. We had an A-HA moment. We are all on our own journeys. We all have a past. We all have a story. Taking the time to visit, to learn, to have a conversation with others, instead of assuming that they are just an ass. Driving to work in the morning and some jerk cuts you off or speeds past you, how do we know that he wasn't rushing to the hospital to be with a dying family member or that his wife is in the backseat, ready to give birth.? I think that we are so quick to judge others. We are a judgemental society and it makes me sad. The next time a cashier is rude to you, ask if she is ok instead of giving her a verbal lickin'. Maybe just stop and take the time to learn about another person's journey.

I asked the waitress for our bill but of course, while I was away from the table, Merilee paid for the bill. I decided that I would pay for the other family's meal.

Merilee and I continued to visit and the mom came up to our table. I didn't want recognition for paying for their bill, I just wanted to do it. In the back of my mind, I also wanted to do it because I bet their journey has been at times, very difficult and trying. I could see how much love the mom had for her children, but I could also see some pain.
She was so grateful and thanked me many times.
She also said that people have passed judgement and they don't take the time to learn and ask questions. People judge her children.
She then began to get teary and she told me that nobody has ever done something like this for her.....ever.

That breaks my heart. I gave her a hug and I waved to the kids.

Take the time to learn about others. We are all on a journey.

Basket number 2 delivered to the hospital :)

 

Don't forget to visit our Facebook page.....

Adele's Over the Rainbow Baskets - Down syndrome LOVIN

Parent Fail....

GO LIKE MY PAGE..... 

Adele's Over the Rainbow Baskets - Down syndrome LOVIN

 

 

The little ones are in bed, so I am taking this opportunity to write about a topic that I have been thinking about for a while now. I wrote a post a while back about being a stay at home mom and how I was tired of reading blog posts written by women who complain and complain that they have the toughest job in the world. I didn't think that being a stay at home mom was the most difficult job and I expressed my opinion that being a working mom, especially a working mom with younger children at home, was more challenging. Anyways, tonight, I want to write about the most difficult and trying and overwhelming job in the whole wide world. That job is parenting. Being a parent is difficult. This is different than being a stay at home mom or dad, this is all of it. This is being a parent to children. This is the working moms and dads, this is the stay at home moms and dads, this is all of us.

Brinley is two and Adele is just about ten months. Life is busy for myself and for James. It's not a feel sorry for me post, it is a post about how I feel I am as a parent and how perhaps others feel about parenting.
When we had Brinley, everything was new to me. I had changed many diapers over the years, but this was my child's diaper. I was now feeding my baby. I was in charge of this little wee life. This little girl was solely dependent upon her parents for love, nourishment, clothing and a roof over her head. When I think about it, it is incredibly overwhelming. It is by far the most important and time consuming job.......ever.
James returned to work after two weeks and I was scared. I was being left at home with a new baby. I didn't go out a lot. I was worried about taking a baby out of the house and driving somewhere and having her lose her shit, either while driving or wherever we were going. It wasn't out of laziness that I didn't go out much, it was the work and uncertainty around being out with this little being, who I barely knew but I had to do it all. I had to follow her schedule, I had to be on the ball, I needed to figure out the difference between a hurt cry, a hungry cry and a tired cry. I found it easier to be in my home. Parent fail.
When Brinley was four weeks old, I started putting on Baby Einstein. REALLY? At four weeks old, I sat in front of the TV because Baby Einstein was going to make my new baby a genius, only later to find out that research shows that it is detrimental to baby's development. Ok, that was a parent fail. She's only four weeks old and I already failed her at something.

Buy the best toys, that will make her a genius, only to find out that several of them were recalled because of choking hazards and it could catch fire. Parent fail.
We became pregnant with Adele when Brinley was still a baby. I felt absolutely brutal for the first few months and really, all I wanted to do was lay on the couch and whine. I would put Brinley in the exersaucer, the one that has the recalled part and hoped that the Mr. Sunshine didn't whack her in the face. I felt shitty. Parent fail.
When we found out about Adele's diagnosis, part of me felt like I had failed. I'm too old to be having a baby and according to the testing sheet that was given to us, it states that maternal age and my blood results contributed to our unborn baby having Down syndrome. At that moment I felt, parent fail.
My blood pressure was high with both pregnancies. Parent fail.
I was on medication for high blood pressure. Parent fail.
I was on Effexor for both pregnancies. Parent fail.
I had to be induced with Brinley at 37 weeks and Adele at 35 weeks. Parent fail. I wanted to go to full term with both girls. I wanted them to grow and develop as much as they possibly could, but that didn't happen. Parent fail.
I felt like my babies had been let down and they were still so young.

Every day, you question how you are as a parent, the choices that you make, the words that you use, your actions. The days go by so quickly and at the end of the day, you wonder if you made the best possible choices.
When you have your first child, you want absolutely everything to be perfect, the clothes, the nursery, the food, the receiving blankets, the car seat, the stroller, the diapers, the hair accessories, the photo shoots, the swing, the toys, the bouncy chair....the list goes on and on. We spend a fortune on everything because we want our children to have it all. We want them to be the best that they can be and that Aidan and Anais blanket will make my child the best that she can be.  

Parenting is crazy hard. All day long, you make choices, you make choices that impact them in that moment and possibly their future as well. You want your children to go to the best schools and will line up at 6:00am, take a number and hope that your child will be accepted. We buy organic food because it's the best, but maybe it's not, we survived, but now there are more chemicals, more dangers. We don't let our children run down the street and there is no way that they can stay out until the street lights come on, there are pedophiles out there.
I don't want to spank or yell at my children, but I've lost my shit. I sure have. I don't know how to reason with a two year old and a ten month old. Now, when I say losing my shit, I am not beating my children, but my voice is loud and I get mad. Yelling does nothing for anybody and it sure doesn't solve the situation. I feel like I fail as a parent when things don't always go smoothly. Parenting is tough.

After having Adele, some of my parenting techniques changed. We had her a month after the flood. That changed how I felt about parenting. Brinley had one sleeper when we made the trek to my parent's house. I didn't care. She was alive and well and we made it out of town safely.
When Adele was in the NICU, I brought her some pretty sleepers, not because I wanted it to look like I was a better parent, I wanted her to know that mommy and daddy will always take care of her. I brought books to the NICU, not because I wanted to look like I was a better parent, I wanted her to hear stories. I wanted to cuddle with her and I wanted her to hear my voice. I would spend as many hours in a day up at the hospital, not because I wanted to look like the better parent, I wanted Adele to know that she was loved, that she was so incredibly important to me and that I will always be there for her. It was a long six weeks. It was trying. I cried a lot. I sometimes felt like I was failing her as a parent. You have to make certain decisions and choices when you have a little one in the hospital, it's tough. I also had another baby at home who needed me. Adele made me change my parenting ways. She honestly has made me slow down. She makes me stop, she makes me look around, she makes me laugh. Adele has something that is so special about her that makes you think about how unimportant some things are and how important others things are....she has changed who I am as a parent. As she continues to grow and get stronger, her personality is also developing. She is funny and she knows it. She attracts people. She makes others look at the world differently. She has made so many lives better, all because she is who she is, this amazing miracle.
This isn't to say that having a child without Down syndrome or a child will special abilities won't make you a better parent. You might have a moment and realize what is truly important. It's just different with Adele. She has made me a better mom to Brinley. There is something about having more than one child. There are lessons that I learned with Brinley. Both my girls continue to make me a better person. They continue to show me that their love is unconditional. It's such a beautiful love.

When we go out now, I have to be honest, I don't care if my kids lose their shit. Why? Well, I know that your kids have lost their shit at some point and it's life. We go out and we have fun. Brinley loves the outdoors and loves to run and play. Routines and schedules are still a big part of our lives. We still have naps and I try hard not to take those away. Kids need sleep. I want to be out. I want them to experience life. I want them to play, laugh and when it comes time for bedtime, I want them to be happy, fulfilled and tired. That makes me a great parent.

I wish that I had a manual, flip to the page and get the answer. I need a manual. Does anybody have a manual? :)
I know that my post today kind of flips around but this is how I feel about parenting. You are here, there and everywhere.

I am just at the start of this parenting journey. I have so many decisions and choices that I will be making for my kids in the future. I will fail many times and apologize and try to make right. I may not always say the right things or deal with situations the way I should, but one thing that I do know, they will be loved, madly and deeply for the rest of their lives.

Our Journeys....

Adele's Over the Rainbow Baskets - Down syndrome LOVIN

 

The other day, I took Adele for therapy and I had a moment. I know that I will have many moments over the years, some will be amazing and some will be worrisome. During therapy, I asked if she was doing well and if we were progressing. The OT paused and said that she was doing well and that she has worked with little ones who have weaker muscle tone. I feel that Adele is so much stronger and I see her growing into a sweet and bright little girl. I know that she is incredibly strong but still floppy. She isn't sitting up unassisted yet, but can actually sit up for a moment with no support.
I hear all of the time that she will get there and she will hit her milestones when she's good and ready. I know all of this. I get it. She will crawl and walk and talk and sit up with no help from mom and dad. It's just that you have these little moments once in a while, moments where you question if you are doing everything possible to ensure success. Are we doing enough OT at home? It's all new to us. After Brinley was born, she was handed to me, we snuggled, I took a shower, she came with us to our room, she was breathing just fine, she was healthy and perfect. We stayed a couple of days because she was a bit jaundice but nothing that was too concerning. We put her in her car seat and went home. It was all very easy.

Brinley at Chuck E Cheese

I was induced with Adele at 35 weeks, James and Ange missed the delivery because they were sent home, Adele was born, I had one little kiss and she was gone, my blood pressure shot up, was not allowed to move for 24 hours, Adele was in the NICU. It was a different journey from the very beginning. I've mentioned this before, we take for granted that our children can breathe, that they can go in a car seat without alarms blaring in our ears, it's all been different. I never knew that car seat tests even existed. They became our goal with Adele. Could she keep up her oxygen levels, she needed to stay above 90. She had three car seat tests in one day and it was so draining, it was exhausting for Adele and we were stressed and worried and spent four and a half hours staring at machines. This was all new to us.

We are still new to this life, the life of having a little one with Down syndrome. We don't google. We don't spend our time reading statistics or perusing the web for all that could go wrong with Adele. I heard the word cancer for the first time weeks after we delivered Adele. Children with Down syndrome have a higher chance of getting cancer. This was devastating for me. I hear people say that they are still just babies and children, they are just like any other child, but the truth is, they are not just like any other child. There are many more concerns and health issues that can arise. I didn't know that she would need her hearing and vision checked regularly, I didn't know that she would need her thyroid checked, I didn't know that she would need blood tests done at certain ages to make sure that she doesn't have certain diseases. I am glad that I didn't know. It wouldn't have changed the path that we chose, it wouldn't have changed any decision that we made when pregnant with Adele. It would have just caused me more stress. I deal better when things just arise. I don't need to know everything in advance. Just tell me when I need to know and when we need to get the tests done.

When I look at our journey up to this point, we have been blessed. We have been so lucky. We spent 6 weeks in the NICU, compared to others who have spent months. Adele's heart was healthy, we didn't need surgery, compared to so many who had surgery within the first few days of life. Adele had an NG tube because she was so sleepy and had troubles staying awake for feedings. Her tube came out the night before we brought her home from the NICU, compared to others whose child still has a feeding tube at three and four years old. Adele didn't pass her car seat test right away, but she got there and we could take her home in a regular car seat, not a car bed, compared to others where it took weeks to pass a car seat test and still had to purchase a car bed to bring their baby home. Adele's hearing is perfect and her vision is also great. Her right eye crosses a bit but that can easily be fixed with glasses and some strengthening, compared to others who have a child with significant hearing loss and vision concerns.

Brinley's Superhero Sidekick Cape! :)

I've heard many times that God only gives you what you can handle and God knows that I can't handle surgeries or any major bumps in this journey. I know that if I was put in the position, we would have to find the strength to cope and I would need a lot of support from family and friends. I can handle little bumps that arise periodically, but that's about it.
I have a friend, her perfect little princess is 5 years old and has endured more than 30 surgeries. I don't know how to deal with that. I hear some of you saying that you do what you have to do, but unless you have been put in this position, we have no clue. I want this little girl to start living life. I want her to run and jump and not have to worry about the next hospital visit. She deserves to live her childhood.

I have met so many amazing people on this journey with Adele. Moms and dads who have overcome so much adversity, so many tests, so many surgeries, so many hospital stays, travel, spending weeks at Ronald McDonald House, spending out money to get the best tests, the best doctors, the best for their child. I have met so many superhero moms and dads, who don't know that they are superheroes. They just do what they have to do to make sure that their child sees another day.
Most of us don't even comprehend this life. We have no idea. I have no idea. I have taken Adele to ACH for appointments, then we get to go home. I have friends, whose children have never stepped foot out of the hospital, never had the opportunity to breathe fresh air, have never played with another child.
Never take for granted that you have healthy children. I know that some days, you want to put them on Craigslist and Kijiji :) and you've had enough, you are entitled to have these days, but be thankful that you have beautiful and healthy children. Savour all of the wonderful moments. Kiss your children all of the time. Hug them. Spend time with them. Laugh. Love so deeply that you can feel it in your heart. Your children chose you to be their mommy and daddy. You were given these perfect miracles for a reason. You are blessed. I am blessed.

For Mother's Day - my blog turned into a book <3

Horror Movie..... :)

All ready for the May weather! :)

While everybody is napping, I figured that this was a good time to write a post. A few thoughts for the day.

I wanted to start with talking about an amazing young man, Andrew. His mom Karen, wrote an extremely kind and supportive post on Adele's Over the Rainbow Baskets. You can check it out, we are the post that was written on April 22nd, 2014.

Group Hug Apparel

One day Andrew was talking to his mom about his cousin who went to college. Andrew said he wanted to go to college and got an idea to raise some money. He originally wanted to make a lemonade stand, but then his mom noticed one of Andrew's recent rock & roll drawings. She thought it would be neat if Andrew sold t-shirts with one of his drawings. She helped him get some shirts, and have them printed. They turned out really cool and have become a hit.
Andrew's t-shirts have expanded to other neat items like tote bags, aprons, hoodies, and onesies. Beyond raising money for college, Andrew also donates part of his t-shirt sales to local charities. Andrew and his family have spent enough time in various hospitals to know that it's important to support these organizations. This little idea has turned into a job for his future that he is excited about. He has a great time meeting lots of new people and spreading his infectious smile! check out his shopping cart ...... SHOP!!!

Andrew has raised thousands of dollars for local charities. He is such a superstar!

My friend Amanda wrote a heartfelt article on our little family for CBC Online! Check it out!

A High River Mom's Year to Remember


Finally, I wanted to tell you about my doctor's appointment the other day. My appointment was with an internist, in the city. Grandma came over to watch the kids, so I got to crank the music on the drive and was happy to have some ME time.
I walked into the doctor's office and had that creepy, nightmarish kind of feeling. The ever so tiny assistant, with the 1960s glasses, hunched over, headset on, answering phone calls. The walls were a salmon type colour mixed with a brown/purple shade. She peeked up at me over her glasses and was just about to ask me my name, when the phone rang. She touched the button on her headset, and spoke in a soft yet assertive voice. The phone didn't connect. She pushed the button on the phone and repeated her good afternoon speech.
She looked up at me and gave me the 'just wait a second look.'
I looked around and noticed that the mail was scattered all over the counter. The doctor's Visa card was in plain view, ready for renewal. Too bad the majority of my brain cells were stolen from me during and after pregnancy, I could only remember the first two digits.
The assistant ended her phone conversation and focused on me. She asked me my name and asked for my health care card. The phone rang again....she touched the button on the headset and said "good afternoon."
The phone didn't connect. She pushed the button on the phone and did her good afternoon speech once again.

I left my health care card on the counter and sat down. The phone didn't stop ringing and she didn't stop pushing the button on her headset, the one that wasn't connected properly.
She gave me my card back and asked for my address and phone number.
I sat on the couch and took in my surroundings. There were scuff marks on the wall from the chairs rubbing, I noticed that the desk was too large for the petite assistant. I couldn't even see her from where I was sitting, but I could hear her repeat the same good afternoon message over and over again. The pictures on the walls were mismatched and odd. A picture of a deer, staring right at me. A picture of a wolf, staring straight at me. All of the pictures were in brass frames and looked as is they were purchased at the local dollar store. There were odds and ends placed sporadically throughout the office. It was bizarre.

I got into see the doctor 45 minutes later then my original appointment time. He was short, a lot shorter than me. He was cheery and had a stethoscope around his neck, maybe to make sure that I knew he was the doctor and not the assistant to the assistant.
He read the referral form that my doctor had faxed over and I realized that this was all new information. This was the first time that he was reading about why I was there....
I looked around the office and saw books on the heart, the body, the lungs. He must know his stuff.

He started to ask me questions but for some reason, I was having some troubles getting it out. I was trying to explain the past seven years, but then he would start comparing what I was talking about to a comic strip. He would say that a woman would turn the heat down and the man would turn the heat up.
"You know, the comic strip, I'm sure you've seen it."
I couldn't quite remember the last time I read a comic.
I smiled.
He would use the comic strip story a few more times during our appointment.
He wanted to check me over.
We headed into the other room and he asked me to take my clothes off, leave my bra and panties on and he would be back. He also told me that he would go do some dictation and would return.
I got undressed and put the gown on.
I sat on the examination table and looked around. The medical table was from the 1970s and it reminded me of a horror movie. I had this feeling that he would come back in with the assistant, she would be dressed in a sexy nurse's outfit, she would take the clip out of her hair, shake her head and blood would be dripping out of her mouth, she bit the last patient.
I looked around.

There was a picture of a gopher. Yes, a gopher. The gopher was sitting upright in some flowers. He was staring right at me. There were other pictures of wildlife, in brass frames, staring at me.
I looked down. Shit! I didn't shave my legs and they were dry. I didn't know that I would end up having a physical. I yanked the gown down, but it opened more at the back. I crossed my legs, that would help. I could feel my face heating. If he comes back in and takes my blood pressure, I'll be screwed. I'm going to be wheeled out of here on a gurney, on my way to the hospital.
He comes back in with his assistant. The headset was still on.
He said that she was here to take notes, but she didn't have a lap top, no pen, no paper. I'm pretty sure that she was there because he is a male doctor, examining a female patient.
He checked my blood pressure. It was 130/80. He was happy and so was I.
He checked my heart, made me take some deep breaths, he was happy. He went to check my ankles and legs. I quickly made a comment "I didn't shave my legs and they're dry. I'm sorry."
The nurse made a quick remark and we giggled. Not a sincere giggle, but we giggled.
He was happy with my body! YAY!!
We headed back to his office, his assistant back to her oversized desk, answering her phone, twice, each time.

We wrapped up the appointment. He sent me away with a requisition form and said that I should come back in a month, once all of the results are in.
The assistant filled out the remainder of the form, making random comments and taking way too long to put in my personal information. I was getting antsy.
We booked another appointment and I left. I was hungry and thirsty, so I stopped at the café downstairs, got a drink and a snack. I was on my way home.
Get in the car, make sure that I have everything. Shit. I left the requisition form....somewhere. Please let it be at the café.
My phone rings. The assistant tells me that the form is sitting on her desk. I have to go back.
I walk up to the oversized desk and see the form. It was wet. She informed me that she had washed her hands after going to the washroom and they must have still been wet. AWESOME! I grabbed the form by the corner.
She then proceeded to ask me if the sun was shining. I looked around and realized that there were no windows.
Yes, the sun is shining.
I left.
I cranked the music and replayed the appointment over and over again in my head.


Please take a minute to vote for Brinley and Adele. Go to Gallery View - Adele is picture #4 and Brinley is #67. It only takes a moment and we would appreciate it, a lot. Contest ends on May 12th, 2014.
Cutest Kid Contest! :)

Moments....

Life has been pretty good lately. Adele is officially off of oxygen, there are no more tubes, no more tape, no more machines, no more prongs in this house. We are finished with the Respiratory Clinic but will be seen by the Pulmonary Clinic from now on, just for check ups. I love that Adele continues to do well, she gets stronger and cuter by the day. Her health has been great these past few months and I am thankful that she has had her RSV shots, I believe that they have helped out a lot and have played a major role in keeping her healthy.

We are going pretty strong on eating solids. She enjoys peas, green beans, sweet potato, carrots and most recently, bananas. I am thankful that so far, she enjoys everything that we have given her, and taken with a smile. I worry about feedings. I have many friends whose little ones are tube fed and where feedings are a struggle. With Adele, I am thankful for every day, every day that she's healthy, every day that she smiles, every day for rolling over, for talking, for snuggles and for the amazing interaction that she has with her sister. It is truly a whole new world for us, so many things that we have taken for granted with Brinley. We honestly took breathing for granted. How is that? We took feedings for granted. Babies just eat and drink because that is what babies do. All for granted.

One thing that I am struggling with a bit is that Adele isn't sitting up unassisted. I know that she will reach every milestone in her own time and she has done so remarkably well, but I can't help but wonder, when will she be able to sit up without flopping over? She is nine months and is beyond strong, stronger then we ever imagined, but her muscle tone is weaker. I know that she will sit up in her own time, I get it, I really do, it's just a different feeling, it's difficult to explain.

I was at a party the other night and I showed a picture of Adele and one of the ladies said that it didn't even looked like she has Down syndrome. I have mentioned this before in a previous post, it doesn't bother me when somebody says this because they just don't know. In her mind, she isn't saying that children with Down syndrome are ugly, she is saying that she knows the features of Down syndrome and it looks like Adele's are more mild. We, as parents with a little one with Down syndrome, we are more sensitive to comments about our children, and we should be, I get it, but this is one comment that doesn't really affect me. The ones that really get me are "Oh, you have a Down's baby." The words 'retarded' and 'fucktard.' Those two words used in any form, make me cringe.
I actually read a post one day on one of the Down syndrome sites, one comment was that she takes offense when people say that somebody is "Special."
I know that sometimes I have said to James that Brinely is "so special." I never really thought about this one before, but I understand where she was coming from. It makes sense. We have stopped!
Another one for some reason, that I don't like is "I have a Down's child."
I think it's that I have an issue with making it possessive because it's defining your child, it's saying that this is what you child is, your child is Down syndrome.
If I had to explain Adele's diagnosis to anybody, it would be, "this is Adele, she has Down syndrome." She is Adele. That is it! :)

The majority of my friends who have children with Down syndrome, they are a bit older, some already in the school system. I enjoy reading their stories and seeing how their little ones are doing great, but I also read about their struggles and concerns. It's tough some days but I also feel comfort that I am present in her future school. The teachers know me, they know Adele. The children know Adele and ask about her....it is so sweet. I am trying to pave a smooth road for her, things that I am able to accomplish right now, without it taking away from my snuggle and loving time with my children. I am still loving all of these moments and enjoying the baby stage, but I am also getting out there and learning about new programs, connecting with others through the blog and through Adele's Over the Rainbow Baskets. I will always be my girls strongest advocate. I will do everything I can so that they are able to succeed without setting limits, giving them all the love and support that we are able to give.

Lastly, we were out last night for dinner with a group of family friends. The dinner was planned because one of the friends is living with cancer. I prefer to saying living and not dying of cancer. I'm pretty sure that doctors have been proven wrong when they have told patients that they have 4-6 weeks to live. This is what Karen has been told. She has up to a month a half to live. She is coming up on 6 weeks and still going strong. The cancer has taken over a lot of her body and it is heartbreaking. She is receiving intensive chemotherapy and is fighting with all that she has...she is a fighter. After dinner, her husband came to our end of the table. While we were talking, he stared at his wife the entire time. He never took his eyes off of her and the love and admiration that I saw, brought comfort to my heart but also brought so much pain. He told me that she is the most remarkable woman. I started to cry. He told me that he does that every day, he cries. I have truly never seen love like this. I have never witnessed a man look at his wife, right into her eyes and without saying a word, show such love and emotion. It was a moment for me.

It was a moment where I realized that we all need to slow down. We all need to stop and take a breath. We all need to appreciate those in our lives, those who we wake up next to every day. We need to tell those who we love that we love them and couldn't imagine our lives without them. We need to let our children have moments where they just need us. We need to let them fall asleep on us and realize that sometimes all they want is love. Such pure, innocent love. I need to slow down. I need to stop thinking about tomorrow. I need to appreciate today. I need to enjoy the moments with my family and be thankful that I have a husband, I have two beautiful girls, I have amazing friends. I need to slow down.