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Transplants and Down Syndrome

This fact makes me incredibly angry. When we were first discussing AJ’s diagnosis, so many people would ask us why he couldn’t “just do a heart transplant

And the short answer was - because Iowa isn’t one of the few states that protect against this kind of discrimination.

In fact - the only states that do are listed below:

California (AB 2861) (1996)
New Jersey (SB1456) (2013)
Maryland (SB 792) (2015)
Massachusetts (Chapter 328) (2016)
Oregon (HB 2839) (2017)
Delaware (HB 21) (2017)
Kansas (HB 2343) (2018)
Ohio (HB 332) (2018)
Pennsylvania (Act 90) (2018)
Washington (HB 5405) (2019)
Louisiana (HB 143) (2019)
Indiana (SB 112) (2019)

Notice something a out those? Most of those states only adopted those protections in the last few years. At the time AJ was born, there were only three states on this list.

Now - I’m AJs case there’s would have likely been other contributing factors, like his pulmonary hypertension, but the fact is that nobody even looked that far. Once he had the official trisomy 21 diagnosis, our options for treatment, or at least the manner in which people talked to us about our options, shifted.

There is definitely work left to do in this area. I don’t believe that a persons diagnosis of Down syndrome alone makes them less worthy of receiving care or support than anyone else, and will continue to push for better protection from discrimination and awareness.

#DownSyndrome #Transplant #downsyndromefacts #trisomy21 #t21fam #stopdiscrimination #MoreAlikeThanDifferent #DownSyndromeAwarenessMonth


See the Momma Behind the Child

For Down Syndrome Awareness Month, be aware of the Down syndrome momma. The momma that loves her child unconditionally but struggles from time to time with a life she didn’t expect or ask for. Nevertheless she is her child’s greatest protector, advocate and champion. She persists when the world tells her it just isn’t possible because she knows anything is possible when it comes to her child. The Down syndrome momma’s heart softens to those around her that are different or in need while her spirit finds a strength and determination she never knew she had. She is exhausted mentally, emotionally and physically in a way she could never describe but still somehow finds the energy to advocate, write letters, read new research, try new therapies and schedule appointments all for her child. Be mindful of the Down syndrome momma that keeps a smile on her face that hides her struggles. She doesn’t want your sorrow, pity or disingenuous comments but she desperately wants your understanding, support and friendship. She finds it hard to balance celebrating the absolute joy her child brings her whilst admitting that life with Down syndrome can be hard. Very hard. The Down syndrome momma doesn’t want to change her child but she will do everything in her power to make sure the world changes for them. This Down Syndrome Awareness Month, take a moment to see the momma behind the child. Original words written by Baskets of Love Down Syndrome Support Society. @basketsofloveds

#takingthescenicroute #MoreAlikeThanDifferent #DownSyndrome #downsyndromeawareness #downsyndromelove #downsyndromerocks #TheLuckyFew #downsyndromeisbeautiful #chromosomallyenhanced #homiewithanextrachromie #seetheability #alittleextra #designergenes #upsyndrome #nothingdownaboutit #t21 #trisomy21 #shouttheirworth #differentisthenewnormal #luckiestmomsever #lifeisbetterwithyou #WouldntChangeAThing #basketsofloveds #DownSyndrome #downsyndromelove #WouldntChangeAThing #lifeisbetterwithyou #TheLuckyFew #T21Club #takingthescenicroute #nothingdownaboutit #nonprofit #spreadinglove

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People with Down syndrome are more alike than different!

People like me with Down syndrome have nourishing friendships, jobs, and relationships.

We go to school. We have celebrity crushes. We get married.

We drink wine with our girlfriends and dance it up at parties (if that’s what we’re into)!

We may even have our own apartments.

You may look at me and think I’m different, but we all have so much more in common!

#DownSyndrome #CheerMeOn #MoreAlikeThanDifferent #Friendship


“As long as she’s healthy...” #theyreworthcelebrating

Raise your hand if you said this while pregnant.🙋‍♀️
This has been the topic of discussion in the #downsyndromecommunityafter the @todayshow interviewed Olympic athlete Shawn Johnson and her husband after a “Down Syndrome scare.”
But what happens if your baby isn’t healthy?
What happens if your baby happens to be born with an extra chromosome or some other “anomaly?”
Does that baby not deserve to be celebrated?! Loved!? Parents congratulated?
Of course she does!
Stella’s Down Syndrome Diagnosis threw us for a loop and we went through all the emotions. Yes, we too prayed for a “normal” baby while we waited for the news. But I wish someone would’ve told me that it was going to be okay either way. I wish someone would’ve celebrated with me. I wish I knew then what I know now.
I get that we all want a healthy baby too..I was heartbroken, scared and angry when we learned of Stella’s heart condition. But her life wasn’t of any less value because of it.
First of all I want you to know that a Down Syndrome Diagnosis doesn’t automatically mean an unhealthy child. But in the event that a child may have health issues, their lives are still worth celebrating! And we need to get better at shouting their worth.
Will you help me shout their worth ? #everylifematters #DownSyndrome

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How May I Help You?

What am I doing to help another when chaos seems to be overwhelming a family member, a neighbor, and even a friend from IG whom I’ve never personally met?
How may I show love to them right where they are, as they are? So many want to talk negatively or judge another without uttering a single word to them personally.
An example of this is, in November 2017, our leaves on one side of our yard were in desperate need of mulching. Without personally reaching out to us and asking how our family was, we received an email from our Home Owners Association giving us a warning that we had until the end of the week to remove them. Little did they know, I had just lost my momma and miscarried within a day of one another and the leaves in our yard was the last thing on my mind!
With that being said, our first instinct may not be to ask how may we help. However, if we see the kindness of another, it may inspire us to do the same! So, when given another opportunity, we can chose to ask “how may I help you?” Then, as more opportunities arise and are acted upon, being kind and helpful can become instinctive!
Here are a few ways to show love instead of judging: “Motherhood can be crazy. May I bring you and your family dinner?” ; “I am doing yard work and am already dirty, may I help mow or pull weeds for you?” What if we became apart of encouragement, breathed love and life into someone instead of adding stress and heartache to another? Can you say #WorldChangers ?!? 🙌🏼
The way I see it, we are all really on the same team. Some team members may look different. Some team members may act different. However, we are a team. Oh, what a difference we can all be, with kindness, compassion, and love, especially during the most chaotic times in another’s life! .
#BeTheChange #empoweringwomen #helpingothers #PositiveVibes #Momlife #Momblogger #MoreAlikeThanDifferent #Team #neighborhood #Kindness #LoveOneAnother #Love #blessings #help #communicate #nojudgement #Hope #IGotYou #LoveThyNeighbor @themightysite

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Changing the Face of Beauty Gives More Than Advertisement

I have a confession. I have only personally met two other mommas that have children with DS. I have met so many beautiful families, via IG, that share a similar journey as ours and I’m so thankful for that friendship! However, the need for a personal connection is vital!
Y’all are “my people”! I need you and you need me. It’s as simple as that. I couldn’t stop crying as I was getting ready this morning because I was afraid of my own emotions that may come out when I walked into our first @changingthefaceofbeauty photo shoot! I was about to be surrounded by more families like mine than I’ve ever been around and they didn’t even know it. I say this because our kids aren’t the only ones that need to see themselves in advertisements, dolls, and magazines. We as parents need to see ourselves in another face, another story, another testimony, over a cup of coffee, or even in a lingering hug.
We never know what another is feeling when we meet them or come into their presence. A simple gesture of love and acceptance is all someone may need.
I have a feeling this is just the beginning of many precious connections! To all my new friends I met today, you and your children are beautiful in so many ways and I’m honored that you are “my people”! .
#Momlife #MyPeople #PositiveVibes #nothingdownaboutit #ChangingTheFaceOfBeauty #kidsofinstagram #MoreAlikeThanDifferent #MakingMemories #Hope #change #mifamilia #DifferentlyAbled #GodMakesNoMistakes #GoodDay #saturday #Love


What wasn’t mentioned is worth mentioning

I kept seeing the cartoon depiction of a child and a man with a ginger colored beard on IG and didn’t understand what it meant until I saw this video today.
What I noticed first about it is what my heart is full of and what I want to spread... LOVE! The second thing I noticed is there is no mention of this precious child having #DownSyndrome .❤️🙌🏼
The video shown here isn’t about a diagnosis or a title! To me, it represents what this child and #PrinceHarry have in their hearts and who they are!
I have struggled with the question to mention DS or not to mention DS when it comes to Savannah. So, sometimes I do, sometimes I don’t!
I don’t want to talk so much about Down Syndrome that I attract more attention to the diagnosis than Savannah herself!
Yes, I want to advocate for Savannah and those that are differently abled! I want to educate those that know nothing about DS (like I used to be). I also want to encourage others that have recently received a diagnosis while being to them the person I once needed.
The purpose of my blog posts and IG feed posts is to show the diverse family we have, real life stuff that is apart of our journey, and overcoming obstacles is possible! We just have a little something extra that is apart of our journey.
Even though DS is what #SavannahLanier has, it isn’t who she is and it’s not what our family is.
I pray our journey and our lives reflect the love of God and the beauty depicted in this video, whether DS is mentioned or not. #StrongerTogether #Love #Diversity #HumanRace #MoreAlikeThanDifferent #BeTheChange #TheLuckyFew #nothingdownaboutit #DownSyndromeAwarenessMonth #October #United #Momlife #Momblogger #ThisIsDownSyndrome #WeAreTheChange #WorldChangers #ComeTogether #LetsDoThis #Bekind #advocate #Acceptance #IWillShoutYourWorth