The Mighty Challenge....
Marriage and special needs parenting: it’s a topic not often discussed, but it’s important, and it deserves more discussion in our community. Can you share a moment on your special needs journey that strengthened your relationship?
I've thought about this topic quite often over the past couple of years. When we received Adele's diagnosis at 15 weeks, it didn't bring us closer together, but it definitely got us talking a lot more. The discussions weren't always light and fluffy, they were usually a bit tense and at times, frustrating. I read once that having a special needs' child, it brings couples closer together and that the divorce rate is substantially lower. Lower? This truly confused me.
Adele was born one month after our town was flooded; we were living with my parents, while our house was being rebuilt. I understand that we had extenuating circumstances that led to more stress, but after Adele's delivery, we were consumed by NICU visits, getting our home fixed and the stress of being grown adults, living with my parents.
Adele spent 6 weeks in the NICU; when we brought her home, we were anxious and still concerned about her breathing. We were focused on contacting FSCD, filling out government forms and trying to keep a newborn healthy. Once we got into a routine, we made sure to contact the necessary supports in the community and began occupational therapy and physical therapy out of the home. When Adele was born, Brinley was not even 17 months old, so we had two babies, one of them required more attention and time. Some days, we both felt overwhelmed and would take it out on each other. The stress of having a special needs' child, would sometimes consume our days and nights. There were times that I would lay awake, beside my husband, who had really turned into my buddy, my pal, my friend, and I would listen to Adele's breathing. I gained more weight; eating because I was stressed and worried and sad.
Marriage success rates are higher when you have a special needs' child?? I still didn't get it.
Adele spent some time in the hospital. They were only brief stays, but James and I were like two ships passing in the night. One would spend the night at home, then we would do a switch the following night.
I remember the first time that Adele spent some time in the hospital. We had recently returned back home from our 3 month stay at mom and dad's house. Adele's breathing was a bit laboured and her colour was off. My gut was telling me to take her in. My sister came with me. Our hospital was sending Adele by ambulance to the Alberta Children's Hospital. I had to take my car, so that I had some form of transportation, as the hospital is over an hour away from where we live. My sister and I stopped off at my house to pick up some stuff for the night's stay. I was short with James, I was mad at the world, I was frustrated and worried about my newborn baby. I was angry that she was sick. I was angry that I had to spend the night away from home. I was angry that the journey was taking another turn, one that wasn't expected. My sister told me that I wasn't being very nice and that it wasn't James' fault. I knew this but he's my husband, he's the one who I take my frustrations out on, he's the one who has no choice but to listen to my fears, my anger and my upset. He is my husband.
Our schedule is full. We have Brinley in extra-curricular activities. Adele receives therapy twice a week, two hours at a time plus she has other appointments at the hospital. I also try to have a life outside of my family and manage to fit in dinners with friends a few times a month. Where do you find the time to make a marriage work?
So here we are, 21 months into this journey. We have come to a place of comfort with Adele, which in turn has lessened the stress in our everyday lives. We worry a bit less with Adele, not completely, but it's less. We laugh a lot more and appreciate and enjoy the days with our beautiful children. We hug and snuggle and cuddle and revel in the excitement and love that our children have for each other. We stop, relax and are thankful for two healthy girls.
James and I have found a way to become a husband and wife again. We used to fall asleep holding each other's hands; we have started doing this again. We not only tell each other that we love and respect one another, we show it. We have slowed down. We work together as a team. We both take care of our home and we show the girls daily, the importance of family, a happy, healthy family.
We are on 4 journeys in this house; one with each other, one with Brinley, one with Adele and one as a family.
The journey with Adele.....
She has brought peace, joy, love and happiness to our family. She has brought light and laughter to those around her. She has taught our family about respecting others, about slowing down, about appreciating the journey that others are travelling.
She has strengthened the bond between James and I, although in the beginning, I feared that this unknown journey was placing a wedge between us. She has taught James and I that our girls need us to be strong, to love with all of our hearts, to give them the home that they deserve. I watch James with his girls and it brings me to tears. Our love for our girls is equal but when I see James interact with Adele, there is always a special moment, it may only last a few seconds, but in that moment, they look into each other's eyes and you know that there is bond that will never be broken, it's a bond that no matter what, he will always be there for her and take care of her and love her unconditionally. These beautiful moments strengthen our marriage. When Adele can't sleep and James snuggles with her late at night, this strengthens our marriage. When Adele laughs hysterically and her dad joins in, this strengthens our marriage. The moments are many and are savoured and cherished.
The journey is rewarding. The journey takes work. The journey is filled with ups and downs but it is our journey and we will walk this journey together.
18 April 2015
The world went crazy!
Yesterday, Michael shared a personal statement regarding the previous post:
"Anybody who knows me would never misinterpret the message of the photo my wife took in Miami that seems to have caused unexpected rage by some people. I do not court controversy. But I realize that a photo that was meant to be complimentary and lighthearted has turned into a questionable issue. For the record, it hurts me deeply that anyone would think that I would disrespect women or be insulting to any human being.. I was not brought up that way and it is not in my character. I regret that there are people out there who found the photo offensive. That was not and is not my intention. Women are to be celebrated, loved, respected, honored and revered. I’ve spent my life believing that and will continue to do so."
I read some of the comments and felt that so many people took it a bit too seriously and their words were hurtful, unkind and offensive. They personally attacked Michael and expressed their disgust and shame towards the singer. "Not cool. This is mean and degrading; even if you meant it as a compliment, I really wouldn't want to be put in her place right now. I'd also like to point out that those who have commented with victim-blaming statements (if she didn't want people to notice, she shouldn't have dressed like that!) are men. Stuff like this really shouldn't be posted, especially by someone with a fan base."
"Funny, a friend of mine last night was trying to convince me that Buble is "not a good guy to women" (her words) and I defended him say he seemed pretty decent in the media. This picture totally changed my opinion.
Mind your own damn business Michael, I wonder if you'd be smiling if someone else took this picture mocking your wife or kid?"
I read through several of the comments and began to understand where others were coming from. I have a great sense of humour. I'm fairly relaxed and truly, I am a huge Michael Bublé fan, having spent obscene amounts of money just to see him in concert. I am open-minded and 'try' to respect others' points of view.
After reading through comments, my views changed slightly. I felt disgusted by those who attacked the girl, saying that her butt is ugly, she needs to workout, she should be ashamed of herself, she is asking to be raped, she is gross and repulsive, she is asking for pictures to be taken and for negative comments to be made, because her ass is hanging out.
Would I ever wear shorts like that in or out of the house? No. If I decided to buy myself a pair from the local Wal-Mart, do I deserve to be ridiculed? No. Do I deserve to have my picture taken and posted for millions to see? No.
I understand that her back is turned and that truly, he wasn't shaming her or making fun of her outfit. He actually complimented her and pointed out that she has a #beautifulbum.
Does this make it ok? I'm not really too sure. I guess maybe, if she was asked and gave him permission to share with his 7 million fans, it would have made it ok, totally acceptable. Sharing a picture with that many followers, that's kind of a big deal.
Yesterday, I went to the CTV studios to record a segment for Alberta Primetime regarding Adele's picture being stolen by an ignorant and disgusting Facebook page.
The interview gave me the opportunity to discuss the emotions and heartache that this brought to our family, friends and community. It gave me the opportunity to share with others that shaming, mocking and making fun of others, is not acceptable. Having Adele's picture unlawfully taken was hurtful and it showed so many of us, that there are heartless, ignorant and cruel people in the world.
We live in a world where we all want to take the perfect picture to share on Facebook, Twitter and Instagram. We want others to respond and strike up a conversation. We want people to laugh and find humour in our posts. We no longer take pictures for our family, we take them to get a response from our hundreds of 'friends' on social media.
After the incident with Adele, I am more cautious of what I post. I am more aware of what I post and make sure that when I share pictures, I place the watermark high up, so that it is touching her face. It took one incident to make me realize that people think that it is fair game when others post on social media sites, they can take, comment and spew out vulgar and revolting comments because they are sitting behind a computer screen and there are no consequences behind their actions.
So, this is the thing.....the girl in Michael's picture, she did not given consent, although many people feel that she didn't need to give permission to have her picture taken. Although Michael did not intentionally shame her or ridicule her, many took it upon themselves to do so.
Many compared her picture to the Wal-Mart photos that we all find hilarious and trashy and pointed out that they did not give the 'photographers' permission to exploit them, so it's fair game.
I see fault on both sides here, the fans and Michael. I see an overly sensitive world, but I also see a world who is defending a young girl whose picture was taken and shared with millions without consent. I see people getting cruel and vulgar and shaming either Michael or the young girl. I would have thought that Michael would have removed his post, not because he needs to admit that he was wrong, but instead, to show the world that the attacks on #beautifulbum is not acceptable or that he is condoning their comments and harsh words.
Michael is a public figure and millions look up to him, follow his journey and is a role model to so many young children. It's imperative to think before posting. It's imperative to put yourself in the other person's shoes and think about how this will affect them. It's a fine line between being a funny, good guy just looking for a laugh and an asshole. (I'm not calling him one....it's ok)
I am a bit overly sensitive when it comes to matters like this. I have been on a journey with Adele, where I want to protect my child as much as I can but not shelter her and isolate her from the world. I will not let others destroy our beautiful family by shaming, using her picture, mocking her and her friends because they are ignorant and uneducated.
In conclusion...yes, I am a teacher and I need to sum this up....
1) Michael should have asked her, that's the right thing to do.
2) Don't bring his singing talents into the arguments. You make yourself look bad.
3) The post should be removed, not to admit defeat, but out of respect for the girl.
4) Does she have every right to wear those shorts without criticism? Yes.
5) If you don't like her shorts, don't buy them.
6) Don't unlike Michael's page because you disagree with him posting the picture, although, you will miss him and return.
7) Don't say that she deserves to be shamed, raped and that she was asking for ridicule.
8) Don't point out how you would have liked it if your butt was hashtagged. You sound silly.
9) Do I think any less of Michael because of this incident? No, because I am an adult.
10) Let's move on.
12 April 2015
I'm A Parent.....
1) During the first year, you smell like barf, even after you use a wet wipe.
2) You get shit under your fingernails at least once a week. Is it just me?
3) You nod and smile at least 100 times a day because you have no idea what your kid is saying.
4) You never go to the bathroom alone. You lock the door, you turn the lights off, they know where you are. They will find you. They will yell and bang on the door. They will stick their hands under the door and yell "MOM! MOM! MOM! MA! MA! MOMMY! MOMMY! MOM! MOM!!
5) Your children go down for naps and you still watch Treehouse for over an hour.
6) You step on Lego and swear. You step on a Hot Wheels car and swear. Giving birth to your children was less painful.
7) You lick your finger and wipe food off your child's face.
8) You lick your finger to fix your child's hair.
9) You lick your finger and wipe off your friends' faces.
10) You stand in line waiting to pay for diapers and cereal puffs and you sway back and forth, back and forth, but you are all alone.
11) You know ALL of the words to ALL of the Frozen songs but you change them to rap songs because you think you are funny.
12) You fart in public and blame your child.
13) Make out sessions with your spouse......what are make out sessions?
14) You go out for dinner with friends, dig through your purse to find your wallet, but all you come up with is a pack of fruit snacks, diapers, wipes, a half eaten sucker and a rattle.
15) You wake up feeling hung-over at least once a week, but you haven't touched a drop of alcohol.
16) Your favourite search engines are; How to be a better parent in a week. How to keep your patience when you have none. How to compete with the 'other' moms. How to lose twenty pounds in a week. How to stop eating your kids' leftover food.
17) Your junk folder is filled with diaper coupons instead of Viagra and vibrator links.
18) Your backseat is filled with juice boxes, crumbs and toys.
19) Your cell phone sits on the table when you go out for dinner with friends because you left the children with dad.
20) You say "just a minute" fifty times a day.
21) Your 'extra' money goes into education funds and not on tropical vacations.
22) You spell out swear words to your friends.
23) You carry Smarties in your purse just in case you need to bribe your offspring.
24) Your back always hurts and your biceps are beautiful from lugging around children.
25) You offer to wipe another child's bum. This is never ok.
26) You use your children as an excuse so that you don't have to go out.
27) Grocery shopping on your own is like going on a vacation.
28) You've thought about how much fun it would be to party with Anna and Elsa.
29) You've heated up your coffee five times in an hour.
30) You can sniff out a dirty diaper like nobody's business.
31) You wipe boogers with your bare hands.
32) You catch another child's puke in your hands.
33) You hope that it was a raisin that your child just ate, but you aren't too concerned, they need to build up their immune system.
34) You drive around the community for an extra hour because your children are napping. There is peace.
35) You say "because I said so" and you don't care.
36) You hear your mother in your own voice and realize that it's not so bad.
37) You allow your toddler to wear pyjama bottoms, a rain coat and a crown because you want to avoid a full blown meltdown.
38) There's a Happy Meal toy in your purse.
39) You threaten your child again and again but never follow through.
40) You don't even flinch when you tell your child that they need to keep their clothes on in church.
41) You've put your cell phone in the crisper.
42) You stuff a chocolate bar in your mouth without even enjoying it, but you are so tired of sharing with the leeches.
43) You say "oopsie daisy" and you aren't even embarrassed.
44) You over analyze cartoons. You wonder if Max and Ruby actually have a mom and dad.
45) You need to plan out when you can shave your legs.
46) You know 'Goodnight Moon' off by heart.
47) Three second rule...that's a bunch of crap.
48) Quiet children = a whole lot of trouble!
49) You cut your spouse's food into bite sized pieces.
50) You have never felt a love so overwhelming and beautiful and perfect.
6 April 2015
Recently, I decided to completely clear off my personal Facebook page.
I read a blog post not too long ago; it talked about how important Facebook is to stay connected to groups, friends and family. It talked about how the special needs' community relies on Facebook groups for support, guidance and reassurance.
In the beginning of this journey with Adele, I searched out the groups on Facebook, I added myself to medical groups, I liked page after page, to stay connected. Part of me relied on these groups to take me through the ups and downs of having a special needs' child. They are communities filled with love, pride and way too many opinions. Some of the groups offer medical advice, shame parents for not doing things the 'right' way and criticize others for their thoughts and beliefs.
I was scrolling through my newsfeed one day and came across a post.
"When did your child start crawling? My little girl is a year old and she has no desire to crawl."
I stared blankly at the post for some time, wondering if I would comment. I wrote a comment, I deleted it. I rewrote it and deleted it again. I scrolled through all of the comments and realized that most of the children were crawling by 15 months.
I commented on the post and proudly said that my daughter is a healthy 20 month old and she isn't crawling yet. I talked about how we have begun to focus our attention elsewhere, on making sure that we encourage speech and verbal development. My comment received the most likes. I didn't really care if it had one like, I was clear that we were content with Adele's development.
In the beginning, I was focused on milestones and when my children should reach each one. How many words. When they should crawl. When they should walk. The charts, the diagrams the curves, the way it should be.
I was a part of all of these Down syndrome groups on Facebook, groups that should be celebrating achievements, yet so many parents were drawn to these charts and milestones. We live in a competitive world where we ask our friends and neighbours when their children achieved certain milestones and then grumble and show disappointment that our child is developing at their own pace. What's wrong with this? Celebrate each milestone and achievement, instead of focusing on when they should be reached. Relish in the beauty of each moment that makes your heart swell with pride instead of the disappointment that it was achieved months later then expected.
I have decided to take a huge step back. My 20 month old is not crawling yet. My 20 month old isn't close to walking. My 20 month old is behind according to the checklists. I have come to the realization that I am so incredibly blessed that we have a very healthy child. We are thankful that she has a healthy heart and that she looks at us with loving and beautiful eyes. Adele is very verbal; this is where we like to focus a lot of our attention. We love the sounds that she makes and how she laughs with all her might and how she plays so lovingly with her sister. We no longer focus on that she is not crawling. We focus on helping her build up muscle strength and teach her how to achieve these wonderful milestones. She will absolutely get to where she needs to be, in her own time. I used to get frustrated when people would say "oh, she'll get there." It was annoying. I don't need to hear from a mom of a typical child that my child with Down syndrome will get there in her own time. Actually, I still don't want to hear it. HA! HA!!! Let's move on. :)
I look back at the past 20 months and truly, if I could tell myself one thing, it would be to relax. I feel like I have missed out on some beautiful moments because I was worried. I missed out some beautiful moments because I was so focused on charts and how things would take so much longer with Adele. I forgot to sit and savour the baby moments. I looked at the calendar and planned out vision appointments, hearing appointments, cardiology appointments, respiratory appointments and therapy appointments. I looked into the future with angst and worry instead of watching my baby develop into this amazing and beautiful child.
I am no longer asking others when their child started to crawl. I am no longer focused on when your little one started to walk. I am focused on my child. I am focused on working with Adele to take her to a place where she needs to be. I am working on staying in the moment and being receptive to what my child needs. I am being the best mom that I can be for my children. Adele is this wondrous and remarkable miracle that has shown us that we need to take a step back, take time during the day to breathe and relax and savour these moments. Time goes by so quickly and I am no longer going to let worry and fear take up my day.
Adele will do it all, in her own time. This is the beauty of Down syndrome.
25 March 2015
The past two days have been frustrating and difficult and amazing all at the same time. Adele's picture was used on Disciples of the New Dawn, which is a Facebook page that promotes hatred and ignorance. At first, I found it to be slightly comical because it was so far fetched and ridiculous. It didn't make sense, it was absurd and completely false. I thought that I would share the picture and ask the community to report it to Facebook as well as send the administrator of the page private messages, requesting that it be removed.
The community stepped up and I was floored by all of the support that we received. I sent the administrator a message and told him that he was messing with the wrong group of people; this is one community that you don't want to **** with; not our children. Yesterday, he replied to the first set of messages, then he decided that it would be better to read them but not give any response. Yesterday, he thought that this was all fun and games but now he is starting to feel the pressure from all over the globe. The amount of messages and screenshots and posts sent to both of my pages has been overwhelming. This is the time to make a difference. This is the time to let people know that we will take a stand and we will defend those we love. We will not back down.
This is not the only Facebook page that is associated with 'Father Embry.' He has at least two others; The Dawn Guard Militia and Junior Disciples. The pages all promote violence against children, it is vulgar and is making a mockery of our loved ones. Adele's picture was not the first one that was used on his page.
The page has been reported by hundreds, if not thousands of people over the past two days and every time, Facebook states that it does not violate their Community Standards. It is perfectly acceptable to post pictures of child abuse, violent punishment, posts that bully others, posts that target a certain group, posts that attack those of varying abilities.
A picture is shared of a woman breastfeeding and it is immediately removed because is it inappropriate and pornographic. This confuses me and angers me.
I have been told by a couple of people that I should let it go. He wants a response. He wants to stir the pot. He loves the negative attention. This is the thing, her picture was used not as intended, which is illegal. He altered it, which is illegal. He does not have the rights to the picture. It belongs to the photographer and the clothing company. Will I sit back and ignore it? No, I would never do that. Is this feeding the animals? No, it's not. This is defending my child, my family and others who have been negatively affected by this low life. Letting it go, which so many do, this is telling him and others, that it's ok, it's acceptable behaviour and we will allow you to discriminate against our children. I would like to see the reactions of others, when it's their child being exploited. When we post pictures on Facebook, people can share them, they can post them on other sites, I get that it is a public forum. The picture of Adele is not his property. He is not allowed to alter a photo that belongs to the photographer and the clothing company; he has no rights. The clothing company is reaching out to their intellectual property lawyer to seek advice and legal counsel.
A while back, Tom Leykis shared a vulgar post. The community came together and after numerous complaints and messages, he removed it. He did this not because he had a guilty conscience, not because he felt bad, he got a verbal lickin' from the Down syndrome community. We do not tolerate ignorant and hurtful people. We do not tolerate those who disrespect our children and families.
Please continue to send him messages and report the pictures and page to Facebook. Keep fighting for what is right.
I choose my battles wisely. I do not let everything bring me down. I know what needs to be fought for and pursued. Letting an animal unlawfully post pictures of our children and use them to mock and degrade is the lowest form of humanity. Let's take a stand. Let's work together as a community. Please sign the petition and help us create change.
22 March 2015
There's this girl Holly, I consider her my friend. She has a wife, Alex, who I also consider my friend, although we are not Facebook buddies yet. :)
A year and a half ago, they decided that it was time to start a family. As they filled out their adoption forms, they got to that little box that asked if they would consider adopting a child with Down syndrome. That little box got one big tick. It was meant to be, this plan had actually been in the works for a very long time; this was their destiny. A baby with Down syndrome would be a blessing. A baby with Down syndrome would be a beautiful gift, a welcomed addition to their family.
BUT WAIT!!! You are gay!
Recently, Holly was approached by ABC Online and asked if she would be willing to share their story. This was their chance to show the world that adoption is giving a family the chance to raise a child. This gives families the chance to love unconditionally and with a love so deep and true. This gives families the opportunity to save a life, to care for a child who would otherwise be put through our system.
“Whether your children are yours through biology or adoption, they are yours through love.” - Sadia Rebecca Rodriguez
“We loved you before we knew you…even when there was just HOPE for you – we loved you.” - Unknown
“Biology is the least of what makes someone a mother.” – Oprah Winfrey
BUT WAIT! You are gay!
As I read the article, my heart swelled for Holly, Alex and Jaxson. It was beautifully written, it was touching and filled with love. The article ended with "He is our perfection. And he has Down syndrome."
Such a wonderful ending to a beautiful story.
I continued reading.
"Because there is a constant glorification that it's okay for a child to be raised without a mother and a father - and it's not okay. Children need both a mother and father to thrive. Other arrangements should not be encouraged or glorified."
"Drown all three of them..."
"They're angry, "in-your-face" types who needed to top simply being a lesbian couple in order to compete in the "more accepting than thou" crowd.
I just hope the little boy is treated well and doesn't suffer from being employed as a prop."
"Reminds me of dog parks in the city where all the hipsters hang out and try to one up each other on who's adopted mutt was the most destitute prior to being adopted."
"Also reminds me of the old Modern Family episode where the gay couple tries to get their adopted Asian daughter into some elite, selective preschool. They're thinking it's a lock because they're gay AND they adopted foreign, and then they see a lesbian couple roll up with one in a wheelchair and an African baby for the next interview.
Lesbian wheelchair couple with an African kicker.....how can you beat that??" I lolled, that was a funny."
"I don't understand, why did they adopt and not just have a child naturally?"
"The child's physical limitations are nothing compared to the unnecessary emotional damages of being raised by two mommies and no father. These two are selfish people."
Not too long ago, a lady from a religious group showed up at my door. Although I was polite and took part in the discussion about God, I don't agree with others selling their religion. It bothers me. I told her that I was a catholic school teacher for ten years. This did nothing to dissuade her. She continued to sell her religion. She asked me if I read the scriptures and if she thought that our world was in danger, would it come to an abrupt end.
I remember looking at her and feeling confused by her comments. I recall sitting in religion class with my students. I clearly remember telling them to be a good person to others. Be kind to others. This is what God wants from all of us.
I talked to the lady at the door about Adele. She wasn't very responsive. She talked about her scriptures. I stopped her. I told her that my friends Holly and Alex, who are gay, adopted a child with Down syndrome. His name is Jaxson. She took a step back. I told her that this adorable miracle has been welcomed into the most loving and beautiful home. I told her that all God wants is for us to be good to one another. Be kind to one another. She left.
As I read the comments under Holly's article, I was disgusted and appalled by the lack of support, education and was wondering how others can be so ignorant.
"A family should only consist of a mother and father." I have been in many homes; homes that are filled with hate, abuse and neglect, but there was a mother and a father. I guess this is ok. A child will thrive in an unhealthy home because there is a mother and a father. A child will find their way and succeed in an unsafe home because there is a mother and a father.
Jaxson would do better in foster care? When you read Holly's blog, when you look at pictures, when you hear about the trips; you know that this child could not have possibly been placed in a better home. I know that Holly and Alex focused on the positive and supportive comments, but it's difficult to look past those who lack knowledge and awareness. It's hurtful.
Two wonderful women adopted a boy with Down syndrome. Two beautiful women opened up their home to a boy with Down syndrome. Two women have filled their home with love, respect and joy.
The definition of a family:
15 March 2015
This week you found out that your son has Leukemia. Your world came crashing down and your worst fears came true. You are staying strong for your family and friends but I can see the worry and hurt in your eyes. As a parent of a child with Down syndrome, this scares me. I worry about my child's future and if we will travel the same road as you. The day you found out, you reached out and the response showed me that you are surrounded by an amazing community. A community who loves you. A community that wants to hold you, protect you and lessen your heartache. In the midst of all of this, you continue to be a good friend to others and you continue to be supportive of those travelling their own journeys. My heart hurt for you this week and because of Grayson's diagnosis, I have decided that Adele's Over the Rainbow Baskets - Down syndrome LOVIN will now make baskets for families who have a child diagnosed with cancer. I delivered two this week and realized that I have the opportunity to bring some comfort to families who are grieving.
I am your friend and I will always be your friend. I will support you and Roger in any way that I can. I will cry with you, I will laugh with you and I will listen.
Seeing you today you looked so sad, so worried, so tired and so beautiful. You looked like a momma who would do anything for her boy and is so scared of what is to come. Although our journeys differ I know those feelings and the fierceness of them. After losing one baby and almost losing my eldest, I wish I could protect every momma from ever feeling those feelings but that is not life. Instead I hope I can lessen the feeling of isolation that comes with those fears.
From a mom who has feared what the future has to hold for her baby, or if there would be one, you are never alone.
From a mom who has held her tummy, telling that baby I will protect and care for you through all this stress the best I can but it might get rough, please stay safe.
From a mom who felt angry that I should be enjoying this baby that is coming but I needed to care for the child that is so sick and sometimes I didn't know how to do both.
From a woman who wanted to be surrounded by friends and family in one moment, and in the next, left alone with my child, to hold and smell and feel them without interruption, and in the next wanting to run as far away from that room as I could get, and yet you can't imagine ever leaving their side.
As a wife I didn't know how to share my thoughts and fears with my husband.
It is all part of the journey...along with so many other experiences and emotions....and you are not alone.
Our journeys vary but most test relationships. Lean on those you know you can, forgive those that can't be there the way you'd like them to. Yell, scream, cry and laugh when you need to. Be kind and gentle and forgive yourself when you feel guilty....maybe not right away but eventually.
I will think of you, Roger, Grayson and that little babe every day. I will send prayers and loving, healthy vibes. And if you ever need anything I will do my very best to be there for you however I can.
We come into this world, not knowing what the future holds, but what I have come to realize, is that we all need to support each other. We will meet many people along this journey, some will remain friends and some will continue on their own paths. What's important, is that we take care of one another, respect one another and know that sometimes the journey takes us in a direction that we never expected. With the help of those around us, we will prevail. We will become stronger, We will make it. It will be ok.
Krista and Chrissy xo
*** If you would like to donate any new baby items or special items for mom and dad, please feel free to send me a message or email me at email@example.com
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Stella & Dot
9 March 2015
It's almost World Down Syndrome Day!
On March 21st, we will celebrate differences, we will celebrate being unique, we will celebrate all abilities and our wonderfully made children.
21 reasons why I love my daughter and how she has made our world a more beautiful place.
1) Her infectious laugh.
2) Her beauty; inside and out.
3) Her gentle ways.
4) How she has inspired others to do good.
5) How she has impacted so many lives in her short 19 months on earth.
6) Her ambition and drive.
7) The way she makes others feel. She is full of light and love and the world sees and feels it.
8) The joy and happiness that she brings to her family and friends.
9) Her brains.
10) She has taught us to not judge others, but to listen and learn about their journey.
11) She wakes up smiling and this has set the tone for how the day begins. It's beautiful.
12) She has shown us how to love. How to love the right way, deep and with raw emotion.
13) She has taught her family that we don't always need to be in a rush, but that we should enjoy the moment.
14) I love that Adele, since day one, has pushed her family to be better people.
15) Her love for her sister. It's a love like no other.
16) I love Adele because she naps. I love napping children.
17) Adele has inspired me to give back to the Down syndrome community.
18) She appreciates snuggles and I love to snuggle.
19) She has brought the most amazing people into my life. I wonder how I've made it this far without knowing some of these amazing women and men.
20) She dances. It makes me smile. It makes me laugh. It brings me so much joy.
21) Adele has this way about her that makes my world a perfect place. She grew inside of me for 35 weeks. I worried. I cried. I didn't know how to raise a child with Down syndrome. When I met Adele for the first time, I was overwhelmed with emotion. What I soon came to realize; she is not Down syndrome. She is my child. She is my heart. All I see is her love for life. It's a beautiful life.
“When you look into your mother’s eyes, you know that is the purest love you can find on this earth.”
20 February 2015
Yesterday as I was scrolling through Facebook, I came across a post that you shared on your wall. I remember looking at it, thinking that the person who added the words "This will go DOWN in retard history", must be one of the biggest assholes on the planet.
I was right.
A handful of friends told me that I should let it go, don't focus on another person's ignorance, just move on. The thing is Tom, it hurt, to the core. When it comes to my children, my family and my friends, I don't just move on and sweep revolting, disgusting and uneducated comments under the rug. I fight for what is right.
I thought about not sharing your post, not asking my friends to report your post and page to Facebook, but I realized that people like you need to be taken down. This is not the first time that you have publicly attacked those with special needs.
You have attacked the wrong group of mothers, fathers, sisters, brothers, grandparents, aunts and uncles. Your ignorance and shameful words have made their way all across the globe and people won't stop fighting for what is right until action is taken against you, against your Facebook page and against your radio program.
I read a handful of comments on the post that you shared; your response to those who left messages, expressing their upset and concern was that of a very shallow man. You attacked back. You continued to bash and use language that only an uneducated person would use. You went to google and copy and pasted inaccurate statistics off of the web. Your comments about how only old women give birth to retards couldn't be farther from the truth. Did you know Tom, that 80% of babies born with Down syndrome are to women under the age of 35? No, I don't think you knew that. The word retard Tom gets used by those who are uneducated and ignorant. You fit this category. You fit it very nicely.
After a lot of thought and reflection, I just wanted to tell you a few things.
1) Adele is my child, she was born with Trisomy 21, that is Down syndrome.
2) She has positively impacted more lives in her short 18 months then you will in your entire lifetime.
3) She doesn't drool as you said in a previous post about Special Olympics but I would be curious to see what your pillow looks like in the morning.
4) Adele is beautiful and smart. I will not comment on your looks.
5) Adele has feelings and so does her friends and family.
6) Adele and her friends will grow up to be productive members of society, you on the other hand, have not grown up and I fear that your maturity and IQ are stuck at the level of a toddler. But wait, I do not want to insult toddlers all over the world. I fear that your way of thinking will be stuck at that of a worm, yes, a worm.
7) Adele has a sense of humour, whereas you do not.
8) Adele makes the world a better place, you Tom, have embarrassed the human race.
9) Adele also has a Facebook page and is by far way more successful than your page. Your amount of followers shows me that you are not a role model, you don't share information or stories or post articles that the world cares about.
10) My child is a miracle. She has taught people all over the world to be kind, patient and to not judge others. You have done the opposite.
My emotions are running high right now and some of my words are harsh. I try not to judge others. I try to find the best in people. I am just so repulsed by you and to be honest, it's really difficult to be any other way at this point. I do not want to stoop to your level, but at this moment, I am angry and enraged.
Your post on Jamie Brewer was removed by you or your admin. You removed all comments pertaining to the post. Where is your public apology? Where are your producers in all of this? My daughter and her friends deserve a formal apology by you and your team.
You know what Tom? Although I think that you are a major douche bag, my child would forgive you. Her friends would forgive you. Our children have beautiful hearts and beautiful souls. You do not deserve forgiveness but to be as shallow as you, it is not in my nature.
We all make mistakes. You are a public figure and your voice carries some weight. Do what is right.
15 February 2015
The other night as we were all laying in bed, reading books, I looked at James and said "it's crazy how we still love our children at the end of the day."
I sort of fake laughed.
I turned the tables and thought about if our friends acted this way, we would be ending a lot of friendships. I think I need more fresh air. ;)
Wouldn't it be funny if we all acted like toddlers and our friends still loved us? The world would be so different. All of us, acting irrationally, childish, innocent and naïve. If we all acted like toddlers.....just think about it.
It's 5:30am and Brinley yells "Mommy, daddy, potty." We jump up, hearts are pounding and realize that the house is not burning down.
I still love you.
A friend is sleeping over, "Krista, James, potty." We jump up, hearts pounding, toss you your jacket and kick you out of the house.
I don't have to love you.
We make our way downstairs for breakfast, I make you oatmeal, you refuse to eat it. I make you two others delicious and nutritious meals and you ignore me.
I still love you.
I'm excited to make my friend breakfast, it's going to be good. You refuse to eat your scrambled eggs. I make you two others meals and you stare at me with a look of confusion. I toss you your jacket and kick you out of the house.
I don't have to love you.
It's time to get ready. I am looking all over for you. We are working on potty training; I find you in the closet taking a poop.
I still love you.
We are hanging out, watching movies and you head to my closet, open it, close it halfway, crouch down and take a big poop. I toss you your jacket, but first, I rub your nose in it and kick you out of the house.
I don't have to love you.
It's time to get dressed. I pick out something beautiful, just for you. You turn it into a wrestling match, I try to sit on you, pin you down, sweet talk you, offer candy. You kick, you scream.
I still love you.
We are getting ready to go out, it's girls' night. I lend you an outfit, you ask me if I can dress you. This is just weird and uncomfortable. I toss you your jacket and kick you out of the house.
I don't have to love you.
We are at Target, you decide to roll around on the floor, you kick, you scream, you pull random items off of the shelves. You open up packages and start eating the food. You yell 3 year old obscenities at me.
I still love you.
We are at Target, you decide to roll around on the floor, you kick, you scream, you pull random items off of the shelves. You open up packages and start eating the food. You yell 38 years old obscenities at me. I slowly back away from the cart and run as fast as I can out the door.
I don't have to love you.
We are at a school celebration, you start undressing yourself. I am wondering where this behaviour came from. Your father? It doesn't matter what I say, you want to be naked.
I still love you.
We are out at a school mass, you start undressing yourself............
Handing you a jacket would be useless. I pretend that I don't know you.
I don't have to love you.
We are driving home from the zoo, you are moody and tired. You yell that you want your DVD player turned on, you yell that you want a juice box, you kick the seat.
I still love you.
We are driving home from the mall, you are moody and tired. You yell that you want the DVD player turned on, you yell that you want a juice box, you kick the seat. I'm thinking WTF?!?!? This girl is whacked. I toss you your jacket and kick you out of the car, while it's still moving.
I don't have to love you.
It's bed time and you refuse to go on the potty, you want the IPad, you won't read books, you will only wear your Minnie Mouse dress to bed.
I still love you.
We are out at a hotel, just getting away, you refuse to go to the bathroom before bed ;), you want the IPad, you won't read a good night story and you will only wear your super hero costume to bed.....with me. I feel a little weirded out, worry about my safety, try to giggle about it and go sleep on the couch.
I don't have to love you.
The amount of stress, worry, tears and heartache that children cause their parents, but we still love you. It's truly the craziest thing. You spend all day and night with your children and they do so many things that drive you nuts, but you love them. You forgive. You move on. You love unconditionally. The commitment that it takes, the hours and the patience. How do we do it? Seriously parents, give yourself a pat on the back, stop being so hard on yourself, be proud that you made it through another day. You are a champion, a hero, an amazing person. Good lord, this parenting thing is the hardest job in the whole world.