I thought I had accepted that Adele had Down syndrome. I thought that during the 20 weeks that we had to prepare before her birth, this would give me the right amount of time to digest the news and accept that our journey would be so different, more obstacles, more tears, more upset. We had so much time to prepare, but I wasn't ready and I don't think that I had truly accepted that Adele had Down syndrome.
My love is unconditional. That has never been a concern. I love Adele will every ounce of my being, but I'm not too sure if I was ready to have a child with Down syndrome.
As I travel this journey, I am finding out new things every day, some are amazing and some are more difficult to deal with. It's not just about the delays, it's about the appointments, the added stress and heartache that comes along with Down syndrome. It's about all of the medical concerns that she gets to face because of this one extra chromosome. The journey with Down syndrome is different, we have this amazing tour guide, who is taking us on a more scenic and beautiful route. It's not the route that we expected, but that's ok, it's the route filled with such picturesque scenery and unwavering love.
While writing this post, I cried. I cried so much, that I needed to stop and take a break.
I woke up this morning and I felt like a weight had been lifted off of my shoulders. I don't know why. Every morning, when I wake up, I look into Adele's crib and she looks up at me with her big blue eyes and she smiles. She smiles so big that it warms your heart. This isn't because of Down syndrome.
Every day, she plays with her sister and gets sad when Brinley isn't around. This isn't because of Down syndrome.
Every day, she works hard to achieve milestones. This isn't because of Down syndrome.
Every day, she wants to be snuggled, fed, loved and talked to. This isn't because of Down syndrome.
Adele does all of these things, because she is 15 months old. She does all of this because this is what babies do.
I woke up this morning and for the first time, I am living for today. I am enjoying the moment with my daughters. I am not feeling the stress of the years to come. I am not dreading school years with Adele. I am not worried about the birthday parties, the bullying, the medical concerns.
Today, I woke up and realized that before me, God has given me these two little miracles who have so heavily impacted my life for the better. I am thankful for their laughter. I am thankful for their smiles. I am thankful that I was chosen to be their mommy. I look at how wondrous these two little beings are and how James and I, out of love, made pure perfection.
Today, I am savouring the moments and not focusing on tomorrow, the tomorrow that isn't promised to any of us. I am loving the time with my family. I am listening to my children's laughter. I am not focusing on the things that I think I could do better, instead, I am telling myself that I am a great mom. I am telling myself that I am working so hard to ensure that my children feel loved and accepted. I am telling myself that James and I may not always be consistent with therapy and rules and consequences, but we do the best that we know how. We wake up every single day and love these girls. We nurture them, we read to them, we sing to them, we play games with them, we take them out to fun places, we tell them all of the time, just how proud we are of them. We were given two little miracles who I know in my heart, will make a huge difference in this world.
I am no longer going to get down on myself because I think that I should be doing more. I should be a better mom. I should focus on therapy more. I should be doing what other moms are doing with their children. I will not feel that I need to compete with other moms. The other day, a friend told me that I was a phenomenal mom. She doesn't realize just how much those words impacted me. At best, I have felt that I am just keeping my head above water, then you call me phenomenal. That day, I felt a shift, a positive shift. A shift in the right direction.
My world changed overnight and I don't know why, but I am so glad that it did.
When you have children, I don't think you ever really know what you are in for. I don't think we truly know what being a parent entails. You have a baby and you think of the joy and love that this child will bring to your life, you don't think about that there may be a difficult journey ahead of you. The future is unknown. What tomorrow brings, we don't know, but what I do know, is that I have been given this moment. I have been given this moment, that I can spend with those who matter most. I am not going to think about what I should have done differently yesterday, I am going to think about what I will do better today. I am going to enjoy that Adele sits up all on her own now. I am going to enjoy that Adele now waves 'hi' and 'bye'. I am going to enjoy Brinley's facial expressions and her love and excitement for life. I am not going to stress about the amount of TV time, the 2 lollipops, the lack of fruit at lunch. I am going to keep loving these girls, keeping them safe and protected and continue to be the mom that they need me to be.
I am telling all of my friends, you are doing a great job. You are an amazing mom. When you start feeling down, when you start questioning whether or not you are a good parent, slow down, take a breath and look at your child. You are worthy. You are amazing. You are doing your best.
Here is my list of things that I have said as a mother. I am surprised and slightly embarrassed.
1) Who has to poo?
2) Brinely, take your finger out of your bum.
3) Adele, put your poo down.
4) Don't eat the play dough.
5) I just said, don't eat the play dough.
6) Fine, eat the dirt, it will help to build your immune system.
7) Stop dry humping the ground.
8) You can't get naked during mass.
9) Do you want Kraft Dinner or hot dogs for lunch?
10) Stop saying "mom, mommy, mom, momma, mom, mommy." I HEAR YOU!
11) Just let her puke on herself in the tub.
12) You need to simmer down, your poo is flying out of your diaper.
13) You're lucky that you're cute.
14) I'm writing the ad for Kijiji right now and I'm even throwing in a box of diapers.
15) Wait until I tell your father.
16) Put another Barbie movie on.
17) Give her the IPad.
18) Eat any coloured snow.
19) If you stop, I will give you a Kinder Surprise.
20) You're acting like your father.
21) Just give her the lollipop, she can eat a meal for dinner.
22) You need to wear clothes when we leave the house.
23) No honey, don't put the toy there.
24) Mommy needs more sleep, lay here beside me and don't move....here's the IPad.
25) Mommy needs a bottle of rum.
26) You come over here, or you will regret this later.
27) You smell like your father.
28) I love you but I don't like you right now.
29) You can have a bath next week.
30) Go ask your father.
31) Mom needs personal time, can you go play on your IPad.
32) Don't lick the slide.
33) Don't lick the rock.
34) Don't lick the garbage.
35) Don't lick the cold pole.
36) Don't lick your shoes.
37) Don't lick your sister.
38) Don't let your sister lick you.
39) Don't fart on your sister.
40) Take the plastic bag off of your head.
41) If you eat your veggies, you can have a Kinder Surprise.
42) Never mind, here's your Kinder Surprise.
43) Stop going inside of the fridge, you don't fit.
44) You can't have a lollipop and a bag of chips for breakfast.
45) Ok, you can have the lollipop but not the chips.
46) Ok, you can have both, but you need to kiss me.
47) Hey, you can't pile drive your sister.
48) No chokeholds in this house.
49) Don't drag your sister across the room by her arm.
50) You are loving your sister a little too much.
51) That's daddy's sensitive area, don't punch or kick.
52) Stop putting your whole face in the chip dip container.
53) You can't just eat ketchup for dinner.
54) It is made from tomatoes......
55) Stop drinking the bath water, your sister just peed.
56) Honey, don't bend over like that when you are naked.
57) Why did you have to poo right when we left the house? Now you have to sit in it.
58) Don't bite my toe.
59) Could you just have put one roll of toilet paper in the toilet?
60) Mom just wants to poo in peace.
61) Don't eat the chalk.
62) Come here, let me smell your bum.
63) Give me the other one. Somebody stinks. Who pooped?
64) Mom needs to find her inner peace.
65) Your dad is gonna get it when he gets home.
66) Stop grabbing my boobies.
67) Stop playing with my stomach fat.
68) Get your head out of my bum.
69) I'm going to call your father.
70) Stop crying, you can't drive mom's car.
71) I'm taking back all of your toys to the store.
72) Stop throwing all of your toys in the garbage.
73) Your savings account looks better than mine.
74) 1........2........3..........
75) I am losing my mind.
76) We are out for dinner, get out from under the table.
77) Stop helping yourself to all of the fruit and candy at the grocery store. That's theft.
78) Your sister will learn to pick her own nose.
79) You have a very poor attitude.
80) Mommy is about to lose her shit.
81) If you don't sit still, I will sit on you.
82) Stop jumping around, you will get diarrhea.
83) Your dinner will be your breakfast.
84) This isn't a restaurant. You eat what I make.
85) Ok, what would you like to eat?
86) Stop rolling when I'm changing your diaper, now I have poo under my nails.
87) Why do your Barbies always have to be naked?
88) I'm the boss in this house. I run the show. You are my little minions.
89) James stop watching MMA, Brinley just booted her sister in the head.
90) If you say no one more time, I'm gonna put you up for adoption.
91) You are acting like an animal.
92) You get that from your father's side of the family.
93) Does anybody ever listen to me??????
94) All three of you need to grow up.
95) Walk away, walk away right now. I'm not kidding.
96) That noise that comes out of your bum is unreal.
97) Sometimes, mom drinks.
98) Stop sniffing me.
99) If you bounce that off of your sister's head one more time, shit's gonna get real.
100) Brinley, don't lick mom's bare bum.
Recently, IDSC posted one of Adele's pictures on their Facebook page. Her picture has been shared almost 6000 times, been liked almost 57 000 times and has received over 1100 comments. The feedback has been phenomenal and amazing. I feel blessed knowing that there are so many unbelievably caring and wonderful people in the world.
There was one comment out of all of them that had me thinking.
"She deserves better."
Such a simple comment with a lot of impact.
This comment made me think about Adele's life. She has a beautiful older sister who adores her immensely. She has a mom and a dad who put her up on a pedestal daily because that's where she deserves to be. She has an auntie and an uncle along with her two cousins, who think that she is a perfect little princess. She has grandparents who love and adore her and remind her all of the time that she is loved. She has a large network of friends, who tell her daily just how beautiful and wonderful she is and somehow, in the short amount of time that she has been on this earth, she has impacted many lives. She has a FACEBOOK PAGE with over 10 000 followers, who make sure to let her know that she has brought an overwhelming amount of joy into their lives and that she has helped many of them, out of deep dark holes and who have now found a new meaning in life. Adele has the world in the palm of her hands......for now.
"She deserves better."
Adele is 15 months old and new to this journey. There is so much love, joy and admiration right now in her life. When she's three years old, will people continue to come up to her and tell her that she is perfect and sweet? When she is five years old, will she be told that she is a miracle? When she's seven years old, will she be invited to parties? When she's ten years old, will she be told that she has a beautiful future ahead of her?
"She deserves better."
When Adele gets past the adorable, sweet and cute baby stage, will the world change their mind about her? How will your views change? When Adele's speech isn't as clear as your child's speech, will you still encourage your child to play with Adele? Will she be left out of birthday parties? Will she be included in the class? Will her teachers love and respect her?
"She deserves better."
This extra chromosome is sometimes a pain in the ass. It makes me mad, then I'm all good with it, then I worry and think about the future.
James and I have made it our mission to help pave the way as much as we can for Adele. We will make ourselves known in the community. We will visit the school and continue to educate the students. We will keep trying to change the views that society has on children with Down syndrome.
The statement "she deserves better", I partly agree. She does deserve better. She deserves respect from everybody she encounters. She deserves to be healthy and happy. She deserves to be loved. She deserves to have all of the same opportunities as other children. She deserves to have a beautiful life.
Yesterday, we went for a nice walk over to auntie and uncle's house. When we got home, it was passed nap time, so I wanted to get Adele fed and both girls put to bed.
As I was feeding Adele, Brinley was walking toward the kitchen. I heard a thump and then she started to cry. I realized that she had banged into her dollhouse. I didn't really think too much of it until I saw her face. There was blood flowing, just above her eyebrow. She wasn't crying very hard. I jumped up, ran over to her and grabbed her.
I sat her down on the couch and realized that she would need to go to the hospital.
She was very calm and happy, unlike her momma, whose heart was pounding in her chest and who needed to be told that her baby was going to be just fine.
She ended up not needing stitches because of where the gash was, so close to her eyebrow. The doctor said that they would eventually grow over it and cover the scar. She got some glue and we were on our way. We were told to get up every two hours and check on her, just to make sure that she was doing fine.
In the grand scheme of things, this was so very minor, but it made me realize that life can change in an instant. Your whole world can be flipped upside down without any warning. Love madly and deeply. Slow down.
Boy meets girl.
Chat over facebook for a week.
Go on a date.
Kiss.
Fall in love quickly.
Move in together after seven months of dating.
Get engaged after eight months of dating.
Married a year later.
Baby number one.
Baby number two.
Lost.
The blogging world talks/writes a lot about how difficult it is to be a parent, whether you are a stay at home parent or a working parent. There is this competition and debate surrounding which one is more difficult. My husband should be so thankful that I stay at home with our children. My husband should be so thankful that I go to work every day and bring home a paycheck.
This is where I am at. Yup, it's damn hard being a parent. It's damn hard raising children. It's damn hard finding a healthy balance, a balance where you take care of your babies, take care of yourself and take care of your partner.
I'm starting to realize that marriage is where I need to focus a lot my energy. I think that marriage is possibly the hardest job out of all of them. Without a strong marriage, can you be a good parent to your children? When you are struggling in your marriage, how does this impact your children?
I find myself struggling with finding time to work on my marriage. I never actually thought that I would ever be in this position. You get married. You have children. You are happy.
I am not happy with how much time and energy I am putting into making my marriage work. I am lacking in this department.
Our routines are set and we follow them, which doesn't include any time for us. James works Monday to Friday, he gets home at 5:00pm, we eat dinner, he takes the kids to the park, they get baths, it's bed time and then I fall into bed and crave.....sleep. I just really want a good night's sleep.
I don't schedule in, kiss James when he gets home from work.
It's......
Get the plates out. Get the food off the BBQ. Get the kids round up for dinner. Serve dinner.
I don't get into bed at night and schedule a good night kiss. I close my eyes and hope that I fall asleep within the hour.
I see my marriage taking a backseat in my life. The life that keeps me so busy.
We are partners. We are partners raising our children. James works so that he can pay the bills and put food on the table. I am grateful.
There have been issues in the past which have put a strain on our marriage. You know, things that happen, where you argue about them, but they never really get resolved? I think we did that with a couple of things. I am the type of person who needs a resolution. It doesn't need to be a full sit down chat that goes on for hours, but an apology and some sort of resolution. I hang onto things. I know that I do. I forgive easily but I don't forget easily. It's a downfall.
James and I are a good match. I am Type A. He is not. I lack a filter. He has a filter. I CAN be relaxed and easy going. He is fairly relaxed and easy going. I like to get things done. He likes to get things done, but more so when he has the time and energy. We both like a nice, clean and organized home. I find that when my home is free of clutter, my mind follows suit. I love my babies with all of my heart. James is the best daddy. He has such a beautiful bond with both of his girls. All of our energy and time goes towards making sure that the girls are happy and healthy and well taken care of. We forget about taking care of us.
We have hit a wall. We are in a place where we don't have time to ourselves. The last time we went on a date, it was our anniversary. We went out for dinner but were back at my parent's house within the hour. I feel guilty leaving my kids with my parents. I feel like I should get back as soon as I can. I need to get over this feeling.....thanks mom. :)
We don't have time to ourselves and when we do, it's at bed time. We have found ourselves caught up in this circle, the same things day after day, when it comes to our marriage.
In the beginning, we went on trips, we took day trips, we went to Mexico, we took naps, we watched movies. That is long gone now. Spontaneity isn't always possible with two little ones. We go out often with the girls and always have a blast, but there is no alone time. None.
My children take up my time. All of it and I don't know how to schedule in "Make Marriage Work."
The routine that we are in, is getting to both of us. I can see why marriages don't last. I can see that when you focus all of your time and attention towards your children and your home, you completely neglect your partner. We are both to blame.
When I was growing up, families stayed together. The majority of my friends, their parents were still married. There were only a couple of good friends, whose parents went their separate ways. It was not common.
Today, I see marriages crumbling all around me. Is there a lack of effort? Is it technology? Why are marriages failing? Are we too caught up in things that just don't matter? Do people still value marriage? Do we go into marriage without really thinking about what it entails?
Don't get me wrong, I wake up happy and I am madly in love with my family, but there is an area that needs work. It needs to be my focus, but I don't know how to focus on it. I don't know where to start.
Do I write a list? Do I plan a date night and hope that somebody will watch the girls? Adele doesn't do well sometimes without her mommy and daddy and I worry that it would be an unbelievably painful experience for a babysitter. Do I consciously make the effort to kiss my husband after work? Do I need to work on myself first before I can ensure that my marriage will be successful?
It seems like there are so many things that get in the way of working on my marriage. We need to find that excitement again. Those feelings that we had when we first met. How do you get that back when you have two little ones?
I need to continue to work on myself and my own self esteem.
I need to continue to strive to make this marriage work.
I need to continue to be the best mom that I can be.
I need to continue to take care of me.
I need to find a balance.
I need to drink more. ;)
Sigh.
There's an article floating around right now Aborting My Baby Oscar Was The Kindest Thing I Could Do For Him.
I was a part of a group on Facebook, all of us parents have a little one with Down syndrome, as well, we all have Facebook pages for our children. Some pages have special projects set up, some are fundraising, some post cute pictures of little ones with Down syndrome.
This article was posted on the page.
I read it.
The first thing that I noticed was that there was a statement that was obviously false - 'a genetic disorder which inhibits the ability to learn and develop mentally.' I'm not too sure where she found this, not too sure if this was her own preconceived notion of Down syndrome, I don't know. What I do know, this statement is clearly false. Children with Down syndrome are able to learn and they do develop mentally. No, they are not children forever. They learn things at their own pace, it may take a little longer, but they get there. 'Under the Abortion Act, termination of a baby with Down syndrome is a legal right up to the point of delivery.' Horrible. Upsetting. Incredibly wrong that this is legal. No, I do not support this in any way, shape or form. Disgusting.
There were a few statements in this article that are clearly false and ones that don't represent our children or my own personal views.
I gave my opinion on the article on this Facebook page which is set up as a safe and caring community and I got my butt handed to me. First, on the page itself, then in private messages.
Let me go back...I acknowledged what was incorrect and false, but I also gave my opinion on the article as a whole, how I personally feel about termination. I truly believe that we were not put on this planet to judge others. We need to focus on the decisions that we make as a family and what is best for us. Be good to others. Be kind to others. Who has the right to tell me what I can and cannot do with my body? Who has the right to tell me that my beliefs are false and ridiculous?
I was told that it's a shame that we grieved when we found out about Adele's diagnosis when we were 15 weeks pregnant. I was told that I should have been happy and welcoming of the diagnosis. I was told that I should have educated myself more on the outcomes of having sex with my husband. I was told that pro-life is the only way. I was told that I'm not a good parent. I was told that my opinions were wrong.
Here goes....
I am not for termination. I am not telling women that if they find out that their unborn baby is diagnosed with an extra chromosome, missing a chromosome, cleft palate, heart condition, you should terminate. Your baby will not be perfect. Who has that right? There are perfectly healthy pregnancies being terminated every single day. It is so sad. Yes, I do think that this needs to change, but it needs to be done the right way. Education and awareness.
For those who are pro-life, I support you, but for those who are preaching and holding up signs on the side of the road, yelling at others because they are scared and worried, shame on you. I have a goal and that is to help educate families, women, give them support, show them that I care. It is not my right to judge you. It is not my right to tell you that you are making the worst decision of your life if you decide to terminate.
Being pro-life, like the one who reminded me over and over again how horrible I am, you are doing the damage. You are getting up in people's faces, you are judgmental, you are harsh, not approachable and if anything, you are giving families an unhealthy outlook into the future.
Having laws set up telling a woman and families that they are not allowed to terminate when a diagnosis of Down syndrome is given, is simply wrong. Setting up laws that parents must meet with a genetics' counsellor, that they must speak with professionals, that they must meet with another family who has a child with Down syndrome, this should be law. Educate families instead of telling them that you will make the decisions for them. It is an overwhelming and frightening time and you are flooded with emotions. Support the family. Educate the family. Grieve with the family. Give them the tools and resources that are needed in order for them to make the best possible decision. James and I were given all of the tools necessary to make an informed decision. It is because of all of this that we felt like we were capable of moving forward on this journey. We are, to this day, thankful for all of the love and support that we received.
I was contacted by a very scared and worried mom-to-be, a few months back. She asked if I would go over to her house and sit down and talk about our journey. I went over with an open mind because I was once in her position. I sat with her. We talked. She was so scared. She didn't think that she could possibly go forward on this journey. How could her and her husband raise a child with Down syndrome? She was depressed. Her doctor wasn't giving her the support that she needed. She was in a very low place. Baby also had some other health concerns which only added to their worries and upset.
I gave her the facts. I gave her support. I gave her my perspective. I told her that we were once in the same place. We were scared and worried and thought that there was no way that we could raise a child with Down syndrome. Today, she is 33 weeks pregnant and anxiously awaiting the arrival of their baby girl.
This is what families need, they need somebody who understands what they are going through, they don't need somebody preaching to them. She didn't need to be judged by me. She needed to talk and feel supported.
Going back to the day when we found out about Adele's diagnosis, there was no lack of love. The tears were because we made this baby, she was ours. We were so scared. The thought of having a baby with Down syndrome was terrifying for us. We had never researched Down syndrome. We only knew what we had read in some books and seen on TV. There was never a moment where we didn't want Adele, not one. There were so many moments where we felt that we weren't capable of this journey. It was not about love. It was about fear and the unknown.
When James and I had sex, yes, that was how both of our children were made, no we didn't think before that there was a chance that our child may have Down syndrome. We didn't sit down and google the stats...what are the chances that a 36 year old woman would have a child with Down syndrome? I guess we were in the wrong.
If you are going to judge me for having real emotions, for being scared, for not having confidence in myself, for questioning what I did wrong, for being sad, for not knowing if we could possibly do this, you don't have a place in my life. You are shallow and unkind. You are not making a difference in the world by criticizing others, all you are doing is making this world a more unhappy place because of your cold remarks and narcissistic attitude.
I make baskets for a reason. I work my ass off to get the word out. I am not doing this for recognition. I am doing this for new families. I am doing this so that families know there are people who care, there are supports, you can do this. I am here for you.
I want to be approachable. I want the termination rate to decline. I want families to come to me and ask for advice. I want to tell them about our journey. I want to share with them that it's not all butterflies and puppy dogs, it is work and there are worries. There is added stress and sometimes you won't have great days. You will feel like you are continuously climbing the mountain, thinking that you will never reach the top, but there are these moments along the way, where you stop, breathe, take in the beauty, slow down and be incredibly thankful for this journey that you have been given.
I am a mother to a child with special needs. I have met many families who have a child with special needs. I have connected with moms over Facebook and we have shared our stories. We have talked about our time spent in the NICU, our hospital stays, our sleepless nights, watching and listening to our babies breathing. We have talked about not going on vacation because there is no insurance coverage, our child is unable to fly, our child has never stepped foot outside of the hospital.....it has been three years.
We have talked about our fears. We have talked about how difficult the journey has been and what the future holds. We talk about how we know exactly what Unit 2 has in the parent lounge, the sleeping arrangements, the waitlist to get into Ronald McDonald House, the food that is served in the cafeteria, what the specials are on Monday, the cost of parking, the NG tubes, 7 French, the cannulas, the tegaderm, the Snuggin Go, the sleep positions, the developmental toys, the FSCD contracts, the Disability Tax Credit, the helmets, the best foods, the worst foods. We send each other videos when we aren't too sure if we should take our child to emergency. We show weakness. We cry. We laugh. We go to bed knowing that tomorrow is another day.
The one thing that I have noticed with almost all moms that I have met since starting this journey, they all say that somebody else has it worse. Somebody else's child has more health concerns. The child down the hall hasn't seen daylight, but my child has seen sunshine, even if it was just at the entrance of The Alberta Children's Hospital. Your friend's child had an NG tube for 2 years, but your child only had it for six months. Your child has only endured four surgeries but the other child has been through eight grueling surgeries and with each one, recovery has been longer.
I delivered a basket to The Rockyview Hospital a few months back to a lovely and wonderful family. The mom headed for her 35 week ultrasound and they noticed that something wasn't quite right. There were heart concerns, there was fluid, there were markers for Down syndrome. She was induced that day. Sweet Sofia spent weeks in the NICU, NG tube and oxygen.
She is now back in the hospital, in heart failure, on oxygen and is too tired to eat. She is fighting right now for her life. I ran into her mommy the other day at the hospital, she looks tired and worried and stressed. I can see the pain and upset in her eyes and I can hear it in her words. Meeting with doctors, nurses and social workers, listening to updates, trying to figure out a surgery date. She looked at me in the cafeteria and said that there are so many other babies who are worse off, more health concerns, more worries. There are others who are struggling more than us.
This is my whole point....right here...right now...
It is imperative that we all acknowledge our struggles. Our children have different needs. Our children are on their own journeys. Sure, some of our children have spent days, weeks, months in the hospital. There have been close calls, there have been so many tears. Some of us have been lucky and our hospital stays have been short, our child's health has been fairly good, we don't spend hours at night preparing syringes filled with medicine and food for our child, but we still have worries and we still have fears. It is so important to never downplay your situation. Don't compare your story to others, don't say that there are so many who are worse off. Don't bury your upset. If it hurts to see your child not crawling at 18 months, acknowledge it. If it hurts that your child needs weekly blood work, acknowledge it. If it hurts that your child needs vision and hearing appointments every three months, acknowledge it. If it hurts that your child is in heart failure, acknowledge it. If it hurts that other children get to play at the park, but your child is confined to a wheelchair, acknowledge it. If it hurts that your child is not on the same path as a 'typical' child, acknowledge it.
Our struggles and our pains, they are ours and they are worth acknowledging. It's ok to feel sorry for yourself once in a while. It's ok to curl up in a ball and wish for a different path. It's ok to think that you have it the worst at that very moment. You are allowed those times.
When your journey takes a turn, don't compare it to the child who is gravely ill, acknowledge that you are in pain, that seeing your child laying on a hospital bed is upsetting for you and that you would do anything to take their pain away.
We are here to support one another. We are here to lend a shoulder to cry on. We are here to laugh with one another. We don't always need to be strong.
Our journeys are our own.
Lately, our lives have been filled with a lot of greatness. We had our interview with Global News and it went really well. The donations and messages have been coming in and the words of support have been overwhelmingly heart warming. It aired four times and each time, I got more likes on Adele's page and more support from people all over the world. I am so happy that we chose to do the segment, although, it's not me. I didn't do this for me, I did this for the girls. I did this for all of Adele's friends. It warms my heart to see all of the love come pouring in for our amazing little miracle. We have a few more media opportunities that are coming up in the near future. We are grateful.
GLOBAL NEWS
The other night, as I was laying in bed, I was thinking about our life with Adele. I do this often, think about the future, think about things that I would change, things that I would do differently and how I honestly feel about Down syndrome.
It's difficult to explain exactly how I feel. There are so many aspects of Down syndrome that warms my heart, but there are so many other things that I detest. I've been reading a lot lately, different posts from moms saying that they would never change their child, they would never change the fact that their child has Down syndrome. I've thought a lot about this and I think I've even said that I wouldn't change Adele. I think I say this to others because I should say it, I should tell others that she is perfect just as she is, she can do anything, she can do everything that 'typical' children can do. The truth is, I'm not too sure if I actually feel this way, if I believe my own words.
Would I change Adele? No, I wouldn't change that we have her in our lives. I wouldn't change her eyes, her smile, her giggle, her little legs and perfectly round face. I wouldn't change Adele, but I would change that she has Down syndrome. Yup, I said it, I would get rid of the extra chromosome.
I don't know if this sounds harsh. I don't know if it's the wrong thing to say. I just don't know if I believe parents when they say that their child is perfect with Down syndrome. I read posts from parents sharing their fears as their child heads back to the operating room for the fifth, tenth, thirtieth time. I see feeding tubes. I see cannulas. I see scars. I see stress and upset and fear.
How, as a parent, would you not want all of this to go away? Maybe you do want it all to go away, but you would not ever consider wanting a child without Down syndrome. I don't know.
There is a list of things that I don't like about Down syndrome:
KIDSHEALTH.ORG
Medical Problems Associated With DS
While some kids with DS have no significant health problems, others may experience a host of medical issues that require extra care. For example, almost half of all children born with Ds will have a congenital heart defect.
Kids with Down syndrome are also at an increased risk of developing pulmonary hypertension, a serious condition that can lead to irreversible damage to the lungs. All infants with Down syndrome should be evaluated by a pediatric cardiologist.
Approximately half of all kids with Ds also have problems with hearing and vision. Hearing loss can be related to fluid buildup in the inner ear or to structural problems of the ear itself. Vision problems commonly include strabismus (cross-eyed), near- or farsightedness, and an increased risk of cataracts.
Regular evaluations by an otolaryngologist (ear, nose, and throat doctor), audiologist, and an ophthalmologist are necessary to detect and correct any problems before they affect language and learning skills.
Other medical conditions that may occur more frequently in kids with Ds include thyroid problems, intestinal abnormalities, seizure disorders, respiratory problems, obesity, an increased susceptibility to infection, and a higher risk of childhood leukemia. Upper neck abnormalities are sometimes found and should be evaluated by a doctor (these can be detected by cervical spine X-rays). Fortunately, many of these conditions are treatable.
Low muscle tone (called hypotonia) is also characteristic of children with Ds, and babies in particular may seem especially "floppy." Though this can and often does improve over time, most children with DS typically reach developmental milestones — like sitting up, crawling, and walking — later than other kids.
At birth, kids with Ds are usually of average size, but they tend to grow at a slower rate and remain smaller than their peers. For infants, low muscle tone may contribute to sucking and feeding problems, as well as constipation and other digestive issues. Toddlers and older kids may have delays in speech and self-care skills like feeding, dressing, and toilet teaching.
I have this fear every day that something may go wrong, that her health may take a turn for the worse, that all of a sudden, I'm told that she has cancer. People who don't know a lot about Down syndrome, they see the physical features associated with Ds, but they don't realize that there are so many other medical concerns that come along with the diagnosis. They see happy and joyful Adele. They have a preconceived notion that people with Down syndrome are always content and easy going. They don't think about how Adele will need extra support and attention for the entirety of her life.
I get that we all worry about our children, that's what we do as parents. There are a lot of blog posts floating around about being a parent to a child with special needs. They talk about sleepless nights, appointments, surgeries, illnesses, stress, the loss of a normal life. I have read a few of them and I get it, but they all seem to end with, I would never change all of this for the world. I don't get it.
I don't regret for an instant that we brought Adele into this world. She is a perfect little miracle. I would rather a child without Down syndrome. It's not the journey that we asked for but are learning how to cope and deal with the appointments and the delays. It's difficult when your 14 month old is not sitting up unassisted, she's not crawling, she is just getting her first tooth, she is behind. People will say that she will get there. I am totally aware that she will get there. I get that she is going to crawl and walk and talk. It makes me mad some days that she has these mountains to climb. That's what they are, mountains. Our children have to work so hard. It makes me sad. I cry when she hits milestones. It's so emotional because I have watched this little being work and work and work just to achieve a small goal. I wish it was easier.
I need to think about the future because Adele will always need support. We will need to have a plan in place for when she is older. You have to do this when you have a child with Down syndrome.
There is no embarrassment that my child has Down syndrome. I don't feel ashamed. I just want her to be able to take the easy road, not the one that is filled with windy curves and bumps. Life should be easy. It sucks when you bring a child into the world and you know that it's going to be difficult. It's going to be difficult for all of us.
All of the projects that I have started are for the girls. I love making the baskets. I love taking them to the hospitals. I am doing this because it is important to me. I want to change the world. I want to educate and let others know that it can be done, but it is work. It is tough. It has its moments. There will be times when you sit down and cry because you feel sorry for your child, you feel sorry for yourself. I have been told many times that we were given Adele for a reason. I do believe that both of our children were given to us for a reason. They have made me a better person. They make me want to do good for others. Some days, I feel that maybe I am working too hard at making sure that Adele has a good future. Does that make sense?
I've read the poem 'Welcome to Holland' may times. I loved it when I initially read it and then I realized that I want Adele to see Italy and all of the architecture and beauty and to be a part of the fast pace. I know that Holland is beautiful, there is no doubt, but I wanted her to choose where she wanted to go. I didn't want her future to be decided for her, that's not fair.
To wrap this up. I love Adele and Brinley with all of my heart. I could not imagine my life without either of them. I love my days. I love taking the girls out. I love showing them both off to new friends and sharing their pictures with the world. I will continue to work with both girls so that they are able to achieve their dreams and goals and their father and I will always be their strongest advocates. I love both girls equally. I am still new to this journey. I don't know what the future holds. Maybe I feel sorry for myself, that I have to raise a child with Down syndrome. Maybe I am the one who doesn't want to work harder than other parents. Maybe as Adele gets older, my brain will relax. I will take life day by day. I will let Adele just be Adele and accept that we were chosen to be on this journey.
I just want the journey to be beautiful for Adele.
