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#mytribe

10 Sep

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Lee & I made it home safe & sound this morning. Lots of prayers answered for that! We had such an amazing time but it was very stressful to see hurricane preparations going on at home (thanks Facebook & Weather Channel), having our flight cancelled, and being hundreds of miles away.

First, I am so thankful to Sophie Dykes for giving her spot on the trip to me since she could not go while Annabelle is in the hospital receiving chemo. Sophie worked SO hard to raise $2500+ for Down Syndrome Diagnosis Network – DSDN so that her trip would be paid for. The fact that I benefited from her hard work is not lost on me. I thought about her every minute. It was an experience I will never forget and cannot adequately thank her for. It was truly an honor to go in her place & all I could think was “I don’t deserve this!” Thank you, friend. I love you to the moon and back. Keep your head up. “You’ve got this & we’ve got you.” God has Annabelle, your family, & the doctors & nurses right in the palm of His hands. Help me repay her by stopping right now & praying for Annabelle, Sophie, Blake, Levi & their entire family. Annabelle is having a really hard time. πŸ™πŸ»πŸ’—πŸ’›πŸ’™

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We took Sophie with us πŸ˜‚

 

Most of you do not know about DSDN, how I know these women, & their significance in my life. I would like to offer a little background info.

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When your child is born with an unexpected diagnosis, you will search high & low for information and stories of families like yours, hoping to learn that your life will be ok, trying to figure out how to deal with the grief & uncertainty. Finding support is so important.

In Jan 2013, after Rosalie was born, I found a group of women on BabyCenter who also had new babies with Down syndrome. A decision was made to form a private group on Facebook because it was just more convenient for everyone. These women were my lifeline during Rosalie’s 2 week NICU stay, then hospital stays in that first year in Valdosta , Jacksonville, & Savannah for possible Hirschsprung’s disease, c diff, colonoscopy, IVIg, severe chronic neutropenia, hypogammaglobulanemia, and then our trek to Michigan to see the top Dr for SCN.

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I am so honored to be a part of this group – the original group of Rockin Moms. Β From our group, we now serve over 4,000 new moms. It’s humbling and so beautifully empowering. Love these girls – the original Rockin’ Moms. ❀️ (Stole your quote, Lauren…thank you)

That first year was probably the hardest year of my life. My “Rockin Mom” group was there for every triumph & every celebration. These women have written a book & started a nonprofit organization, Down Syndrome Diagnosis Network, which works to educate medical professionals about the RIGHT WAY to deliver a prenatal or birth diagnosis of Trisomy 21, Down syndrome, as well as offer support to mamas of rockin’ kids 3 yrs & under, mamas who are dealing with loss & extended hospital stays.

I was so fortunate to not have a bad experience like soooooo many other women in the world. Our doctors told us, “Congratulations! You have a perfect baby girl. Take her home & love her just like you did with her big sister.” Other women are just automatically scheduled for & encouraged to have an abortion because some doctors are completely uneducated and think that individuals with Down syndrome will be nothing but a burden on families & society. If you know Rosalie, you know that could not be further from the truth.

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So these women have been my tribe for almost 5 years now, and I finally got to meet their beautiful faces & hug their necks in person this weekend. These are the women who GET IT. They know what our life is like and are going through the same things my family goes through. No judgement, just support thru the good & bad.

Thank you to all who worked so hard to put on such an amazing weekend!! I am so very thankful for the opportunity to meet so many Rockin Moms!!

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I cannot end without thanking Rachel Coleman for the laughs and the tears and the inspiration to carry on. I totally “fan girled” this weekend.

“We may not find easy, but baby we found the the good.”

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It was so good to see Kristie, Gabe & Alex this weekend! She finally got to “meet” Sophie! πŸ˜‚

 

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In memory of Angel

24 Apr

The only way I will be able to get any sleep tonight is if I write & get out everything I have running thru my head.

I got one of those phone calls tonight that I wish had never happened. It was a dear friend and she was crying.

“Why are you crying??!!”

And she said, “You’re gonna be cryin too, sister. You know, Angel?”

Of course I knew Angel. Angel R. was my Angel. She was one of our heroes. She first came into my family’s life on April 10, 2011, in the early hours of the morning, when MB was born via c-section.
20140424-133840.jpg (That’s Angel in the background in the blue gown)

Angel was our baby nurse that night & she cleaned up MB, helped Will cut the cord, and once I was in recovery & MB’s temp was regulated well enough, Angel brought my sweet baby to me and placed my first born in my arms for the first time.
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She was Heaven-sent that week during our stay in the hospital. She would work the night shift, and since they served dinner at 4:30 on Post Partum, I was starving by MB’s 9 o’clock feeding, let alone midnight or 3 am! So one night Angel brought me tons of food…sandwiches, graham crackers, Gatorade…I could have kissed her! But she was too busy kissing on my sweet MB! πŸ™‚ I remember her kissing on MB & apologizing, saying that could get her in trouble for kissing babies, but I appreciated the fact that she truly loved my baby.
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I was able to rest easy knowing MB was in the nursery with Angel & Angel was watching over her. The nights that Angel was not working, I would make Will spend the night with me. One night she surprised us & walked in my room & I just looked at Will & said, “well, you can go now! Angel is here! I’ll be fine!” She was so much help overnight with helping me learn to nurse, so if she wasn’t there, I had Will stay because I just did not have the confidence as a new mom yet.

I remember telling Angel goodbye at the hospital & then taking MB home & later crying to Nickie, one of my BFFs who worked in L&D at the time, telling her how I wish I could have brought Angel home with me.

Fast forward 21 months and I am being wheeled into the OR again, except the mood this time is very different, much more somber & I am much more nervous. More like petrified. Scared that I’m about to give birth and then mourn the death of my baby at once.

I remember looking to my left & PTL, Angel is standing there! I was so relieved. She did not remember me at the time but later she told me how special it made her feel that day that I remembered her. How could I forget the nurse who was my saving Grace those first few days with my first born when I was crying at the drop of a dime and had absolutely no idea what I was doing.

Several hours later, Will and I waited in my hospital room for news about our sweet Rosalie. Finally the door opened and in walked Angel, Kendra, and Dr. Young. Dr. Young was here to deliver the news that our precious baby was born with an extra chromosome and Angel and Kendra were there for support.

After learning of Angel’s passing last night, I spoke to several other mothers who were in similar shoes when their babies were born and we all had one thing in common. Angel. Angel was there with us, holding our hands in the most uncertain of times. That just speaks volumes of the amazing, gentle, compassionate human being she was.

I will never forget the time I spent with her in the NICU, talking to her and watching her care for all of the babies while I sat and rocked Rosalie. She would talk about her granddaughter who she was so proud of and her love for her family. I was fortunate that she knew a good bit about Down syndrome because I did not have time to Google. I knew nothing and I learned a lot from her those first two weeks. After Rosalie came home with us, we kept in touch, as I have tried to do with all the nurses because they all have a special place in our hearts.
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A few weeks ago, we were so happy to have Angel and her husband as our guests at the Down Syndrome Association of South Georgia’s World DS Day Celebration. I am so thankful that we were able to spend this time together. She was so happy to see the girls and so many other babies that she has cared for.
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We will never forget Angel and I will make sure my daughters always remember how she cared for them and how special she is to us. My heart goes out to her family and to all of the wonderful people she called her work family. You are all in our prayers.

She doesn’t look like a “Downs baby”

8 Mar

20140308-100021.jpgI have been waiting for the right time – a really long time – to write this post. I was waiting to go a week or a couple of weeks without hearing someone say this, then I would write the post, because I don’t want anyone at all to think this post is directed toward them. It absolutely is not.

But I could never wait to post this because I am told this soooo much. 99.9% of the time I know the intention of the person saying it is good. And I will actually sit there and have a conversation about it, so please don’t feel bad if you’ve said this to me. There has only been one time when it rubbed me the wrong way….I may talk about it later.

It’s just another thing to add to the list of comments that I probably said myself before I had a child with Down syndrome.

Drumroll please…..

“But she doesn’t look like she has Down syndrome?!”

I do not take offense to this (& most moms & dad’s probably don’t either), but I remember the first time it was said to me after Rosalie was born, it caught me off guard & I thought, “well, what’s that supposed to mean?” I’m proud of how Rosalie looks, whether she “looks” like she has Ds or not.

But then the second and third and forth times I heard it from well-meaning friends, I grew a little more and more uncomfortable with it.
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And here’s why. In our society, we are basically brainwashed into thinking that having a baby with beautiful almond shaped eyes, epicanthal folds (the skin fold of the upper eyelid covers the inner angle of the eye), a single palm crease and a flat nasal bridge (etc.) is undesirable.
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That’s why the abortion rate for prenatal diagnoses of Down syndrome is over 90%. So when someone says, “She doesn’t look like she has Down syndrome!” It feels like they are saying “Well, she doesn’t look undesirable!” And to that I could say thanks, but then that would imply that Rosalie’s other friends aren’t as good looking & trust me, Rosalie has some CUTIE PIE friends, from Valdosta & all over the US.

Am I rambling, or is this making sense?

Or, others may throw in, “she must not have such a severe case,” or “her ‘Downs’ must not be that bad.” Unfortunately, that’s just not how it works. One either has Trisomy 21, Down syndrome or not. Those who have Down syndrome are individuals, just like everyone else in the world. And thankfully, God made us all different and all in His image (Gen. 1:27).
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Rosalie is beautiful. I see the characteristics of Down syndrome when I see her and I absolutely adore that about her. Now I can spot a child with Ds from a mile away. I get so excited when I see a child or adult with Down syndrome in a Target ad, on Sesame Street, or on a tv show. I wish we could see more.

I truly think that Down syndrome is so beautiful. So please, if you think it may be paying a compliment to a mommy or daddy by telling them their child doesn’t look like they have Down syndrome, maybe just tell them their child is beautiful instead. That’s all that is needed. πŸ™‚
20140308-100446.jpgRosalie has learned to wave bye bye!

End the “r” word for Rosalie!

5 Mar

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So today is March 5th, the day we Spread the Word to End the Word. The “r” word.
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I am guilty of using the r word. In high school and in college, I probably used it a lot to describe many people or situations. I am so ashamed to admit it now.

I began to work for Special Olympics Georgia in 2006 and I cut it out of my vocabulary, not just because I didn’t want to offend anyone in my job, but because I saw just how wrong and hurtful it was to use it. After I left my job at SOGA, I’m sure I let it slip every once in a while. I mean, what’s the harm? I didn’t mean it “that way.” (How many times have we as parents of children with Down syndrome heard that?)

Now that I am a parent of a child with Down syndrome, I absolutely hate the word. Every time I hear it, it’s like a slap in the face. I am great at playing it cool and being understanding, because at one time I DIDN’T have a child with an intellectual disability (ID) & so now that I do doesn’t mean I don’t make mistakes myself.
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But hearing the r-word is like a knife in the heart. And then I think about my beautiful sweet girl & her awesome friends, and I just can’t keep quiet. I have to say something. I don’t want to embarrass anyone, but I want people to stop using the word. And not just in front of me, but altogether!

When you use the r-word, you are comparing someone or something to my child & her friends in a negative way, plain and simple. And yes, you DID mean it that way.

Put yourself in the shoes of a parent of a child with an ID like Down syndrome. Just try so hard to imagine. You are out with friends at dinner and someone loudly says, “What a retard!” (Remember, your child has an ID.) How do you imagine you would react? Are you gonna laugh along or is your heart going to drop into your stomach as you try to catch your breath while you feel everyone’s eyes on you because YOU have a child who has an ID.
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Seriously, like the poster I’ve seen, there are a ZILLION other words you could use. I will buy you a thesaurus if you need to pick a new one, just stop using the R-word.

Rosalie and her friends thank you.
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Our week in pictures

23 Feb

We have had so much going on lately! I had to have ACDF (spinal fusion) surgery on my cervical spine (neck) three weeks ago. We are so thankful for our friends and church family who called & texted, brought meals, & prayed during my recovery. I am doing great & it’s greAt to be able to use my hands & arms without them going numb or hurting.20140223-230941.jpgRecovering from this surgery with a one year old (who can only just army crawl) and a two year old, would not have been possible without my completely devoted husband, my mom, mother-in-law, our sweet babysitter, Hannah, and lots of prayers. I’m finally three weeks post surgery and finally feeling better. I am even taking off my cervical collar for short periods at home & doing well. I’m still not supposed to lift but sometimes with Rosalie, it just can’t be helped. And I think this week I will probably be able to start driving again. So thanks so much for the prayers!!

We had a VERY exciting week (including one trip to the ER) & I took some cute pictures that I wanted to share with y’all!

First, Rosalie is participating in the IRUN4 program (http://www.whoirun4.com). She has been paired with an amazing buddy, Amanda, who lives in Kentucky. Amanda runs for Rosalie since Rosalie can’t run herself.20140223-231104.jpg Amanda participated in the IRUN4 virtual race and completed a 5K in honor of Rosalie’s first birthday. She had the medal engraved and sent it to Rosalie along with some Valentine’s Day goodies for both girls. She is always so thoughtful to include MB. I hope we get to meet Amanda & her sweet family someday because we love them very much!

Sadly, when we moved from the city to the county, we had to change speech therapists. So Rosalie has a new ST, Katie, whom we LOVE and we loved her before because she is a friend. Katie works so hard with Rosalie, doing exercises and teaching me things to do to help with chewing, swallowing, keeping her tongue in & encouraging speech. Our one big goal lately has been for Rosalie to drink from a straw cup. Why is this so important? It’s not only something kids with Down syndrome tend to work toward, but typical kids too. It’s just better for oral motor development & strengthening their mouth muscles. Noah’ Dad has some great info about it:

“How my child with Down syndrome learned to drink from a straw cup”
http://noahsdad.com/drinking-from-straw-cup/

“Why A Straw Cup Is Better Than a Sippy Cup or Bottle for Oral Motor Development”
http://noahsdad.com/cup/
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Back to my story…Tuesday during speech therapy, we sat Rosalie down with her cip kup (http://www.arktherapeutic.com/Cip-kupSAR.html) and right before our eyes, she started to suck & drink from the straw!!!! I later grabbed the playtex straw trainer cup & she drank from it like it was her job!!! We were so so proud! What a sense of accomplishment & relief to see the wheels in her sweet noggin turning as things start to click for her.

We have a new PT too. We have started taking Rosalie to see Michelle at Sutherland Physical Therapy & things are going great. I can really see a progression even in just a short amount of time. So, the day after mastering the straw cup, Rosalie wasn’t done showing off. I was sitting in the den, watching her play & army crawl around on her belly, when right before my eyes, she just pushed herself up into a sitting position! I was stunned!! And then, of course, I took a picture before MB & I clapped & cheered for her. πŸ™‚ 20140223-233536.jpgI’ve seen her do it one other time in her crib as I watched on the baby monitor. We can FINALLY lower her crib!!!! I don’t think we’ve lowered it since she was born! We just didn’t need to because she didn’t have the strength to pull or push up. So exciting!!

Rosalie also had OT (occupational therapy) this week, but it just didn’t go as well as in the past. She completely passed out in my arms in the middle of the session so we are going to change the time of her OT.

The girls did have two play dates this week! One was LONG overdue!! My dear sweet lifelong friend came up from Tallahassee to visit her cousin’s beautiful new baby, who are also friends, so we just had one big play date. MB & Gabby had so much fun playing together, just like their mommies used to.
20140223-230758.jpgRosalie loved watching & trying to play & keep up, and sweet little EllaKate slept right through all of the squealing & screaming. πŸ™‚ I didn’t get to hold EllaKate this time because I wanted Andrea to have plenty of time to cuddle with her, plus this ginormous cervical collar makes baby holding a little awkward, but I’m gonna get my hands on her soon! πŸ™‚

Rosalie’s BFF, Reagan also came over to play this week& we had tons of fun as usual. That child is so beautiful & smart, I just love her & her sweet mommy so much! I wish I had taken a picture because the three girls looked like the perfect Carter’s spring advertisement. πŸ™‚

Later that evening, MB decided to dive head first over this chair onto the wood floor and get a concussion. 20140223-232237.jpg
She’s had a bad fall before, like the time she took a dive out of her crib head first & even got a swollen black eye from it, but this time was different. She didn’t cry for 15 min then go back to playing like before. She just laid in bed screaming in agony with ice on her head, going in & out of sleep. And when she would wake up, she could barely hold her eyes open. We had just made the call to take her to youth care so Will picked her up and then she just started vomiting profusely. It was terrifying. I don’t think Will or I have ever been so scared or moved so quick to get her to the hospital. 20140223-231217.jpgThey did a ct scan (tons of fun trying to hold her head still for that!) said it was just a mild concussion, & by the time we went home, she was already acting like herself, which was such a relief. I think she learned her lesson about climbing on the furniture….I hope!

On Friday, Rosalie was supposed to have a GI appointment at Shands, but we didn’t make it more than 6 miles down the interstate before almost being blown away. I have never seen the wind blow so hard. The weather was awful. So we rescheduled for March.

Here are some other precious pictures I took this week:

20140223-231429.jpgJust chillin’ watching tv together. How sweet is that? Thanks, Hannah, for taking this picture.

20140223-231623.jpgEating lunch with MB at the big girls’ table!

20140223-231818.jpgGrocery shopping with mom & dad!! (Don’t worry, fellow SCN moms, I sanitized the living daylights outta that cart!)

20140223-232017.jpgTea for Two!

20140223-232120.jpgI could truly eat her up!

I almost forgot the most important bit of news of all. Please pray for MB & Will’s & my sanity. We have taken the paci away. She lost it Saturday, we couldn’t find it, but Will did find it Sunday morning & promptly put it in the trash. No more pacifier. It is way past time for her to let go. She having a rough time, so please just say a little prayer that we make it through!
Have a blessed week from the Moore family!

What caused Rosalie’s Down syndrome

26 Jan

Sometimes, don’t you wish you could just go back in time? Do you replay a conversation over and over in your head & think about what you WISH you would have said? That has been me lately.
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I wanted to use this blog to raise awareness of Down syndrome and I have not done that at all really. An encounter I had recently inspired me to get back into it because a lot of folks still have a lot to learn. And the more people learn, the better life will be for my sweet girl & her awesome friends.20140126-214031.jpg

The conversation I had recently went something like this:

Other person: “So did they ever determine what caused ‘IT’ in Rosalie? The Down syndrome? Like, was it you or Will? Or something you did? Or is it in your family?”

Me: I could just feel my blood pressure rising as I tried to kindly answer, “No, Down syndrome is…”

Other person: “Because so-and-so has two people in their family….well, they aren’t “Down syndrome” but they are “something else…” [Just a note- NO ONE “is Down syndrome.” They HAVE Down syndrome. Down syndrome isn’t what or who Rosalie is. SHE IS ROSALIE & SHE IS A PERFECT HUMAN BEING.]
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Me: Trying to calm the voice in my head that is screaming at this person, I tried to get a word in before they could say anything else….”No, Down syndrome is a completely random occurrence. It’s not inherited and it has nothing to do with anything Will or I did.”

I don’t even remember what was said after that. I know they did not mean any harm at all. Sometimes people just don’t know what to say & I was once that person (I still am in other situations). But I just wanted to get out of there before this person said anything else to make me feel like I possibly could be responsible for my child being born with Down syndrome. I’m not going down that road.

What I wish I would have said…..

“It’s a completely random occurrence & WE HIT THE JACKPOT!!!!!” There is not a single thing I would change about this child. Who cares WHY or HOW Rosalie has Down syndrome? The fact is, she has it, & it’s not going away, but it’s only a part of who she is.

That reminds me of another question I was asked recently by someone I met. When I told the person that Rosalie had Down syndrome, he did not know what it was so I tried to explain it to him. He looked at me, so concerned, and asked, “but she’ll grow out of it, right?” I thought he might cry when I told him that extra chromosome wasn’t going anywhere. It is definitely nothing to cry about! It’s not bringing Rosalie down, that’s for sure!

But back to what causes Down syndrome. According to the National Down Syndrome Society (ndss.org),
“Down syndrome is usually caused by an error in cell division called “nondisjunction.” Nondisjunction results in an embryo with three copies of chromosome 21 instead of the usual two. Prior to or at conception, a pair of 21st chromosomes in either the sperm or the egg fails to separate. As the embryo develops, the extra chromosome is replicated in every cell of the body. This type of Down syndrome, which accounts for 95% of cases, is called trisomy 21.” There is no hereditary component in Trisomy 21.

It’s just how God knitted her in my womb. He has big plans for her & I believe He is already using her for great things. She has certainly changed my life.
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There are also two other much less common types of Down syndrome, mosaicism & translocation. In one-third of cases resulting from translocation, there is a hereditary component.

To learn more, the National Down Syndrome Society has some great info.

A great post over at Noah’s Dad: http://noahsdad.com/did-i-cause-down-syndrome/

Rosalie, the one year old

26 Jan

20140126-102207.jpgI feel awful that I have not updated in several months, but I have just been busy living life, taking care of two precious little girls, enjoying the holidays, moving, and trying to keep up with all of Rosalie’s different appointments.

Rosalie is doing great right now. She was officially diagnosed with severe chronic neutropenia & placed on the Severe Chronic Neutropenia International Registry. The registry is for research purposes & the great part is that they provide Rosalie’s medication for free. She gets a neupogen shot everyday. Learning to give her a shot was absolutely awful, I truly hated it & did not think I would be able to do it. But she & I finally got used to it & now it is not a big deal, thank goodness!

The great news from her visit to the doctor in Michigan was that her transient hypogammaglobulinemia has resolved itself. That was a huge blessing. So she has not had an IVIG treatment since July & she is finally getting her vaccines.

She will see a GI doctor at Shands next week for some continued tummy issues she has had since she was a month old. And in February she will see an orthopedist at Shands for a leg length discrepancy.

Right now she is fighting a really really nasty cold or something. She has been running a fever since Friday morning & putting the Nose Frida to good use. We planned a little birthday party for her yesterday & we had to cancel it because she was feeling so bad. It was so disappointing.

Rosalie brightens our world every single day. She is just so sweet & beautiful. We absolutely cannot imagine our lives without her!!

20140126-101413.jpgRosalie on her first birthday- she likes loves cupcakes!!!

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20140126-102120.jpgChristmas Day