Here’s the Truth…

I have shared with many, and even wrote about it throughout blog posts on here, that although it was really hard for me to find out about Gracie’s diagnosis so early in my pregnancy, I am so grateful that it happened that way.

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I did lots of questioning and had a lot of hurt and anger as I wrestled with what our new normal was going to look like. It’s embarrassing now, but that’s the truth – and that’s why I am so glad I found out early. I am so blessed to be able to meet a mom with a new diagnosis and say, “however you are feeling right now is OK, but I promise, it is going to be amazing.”

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Because, here’s the truth…

It. Is. Amazing.

How it has changed me, Les, Gage, our family, and friends areĀ serious, life-changing, monumental changes. The respect and value that has blossomed in me for others is overwhelming sometimes. I think before Gracie, I had a bit of a blind eye and was just naive to a lot of the world. I am so glad I am not that naive, nonchalant person anymore.

The things that stir my heart and am passionate about are completely different. Inclusiveness, saving the lives of the unborn, spreading the word that all life is precious, that those with disabilities are more alike others than they are different, and that God’s plan is perfect, are all things that weren’t on my radar to this extent before Gracie.

Man, I am so grateful I have those fires inside of me now.

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Here’s the truth… The way that I am seeing the beauty of God’s perfect plan for Gage being Gracie’s older brother brings me to tears on a regular basis.

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Here’s the truth… We all wake her up together on most days and try to be the first one to hold her and snuggle her. (Gage won this past weekend).

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Here’s the truth… Gage is leaps and bounds more compassionate, patient, and thoughtful than I could ever imagine was possible for a 5-year-old.

Here’s the truth… Because of Gracie, I have been able to talk to several people who receive a prenatal diagnosis that are scared, contemplating options, and questioning God, and have been able to share about our new normal and how blessed we are.

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Here’s the truth… her love and excitement over sweets creates some of the most joyful moments we have as a family and she makes us laugh more than anyone ever could.

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Here’s the truth… she has the best smile and laugh and brings out the best in all of us. We will do anything to see her (and Gage too!) have fun (even if that means Les runs down every aisle of the grocery store to make them belly laugh).

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Those truths about having a child with Down syndrome don’t sound too bad, do they? Sure, there are a few more medical concerns, some therapy appointments, some extra work at home to help her have every tool she needs to develop, but who cares? All that is leaps and bounds worth it if it means I get all the moments I listed above.

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Posted in Down Syndrome, Every Day Stuff, Gage, Gracie

Happy Tears

When you find yourself crying in an elevator, it seems like a good time to dust off the blog and give an update!

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Gracie had her yearly cardio checkup and her heart looks PERFECT. The cardiologist doesn’t see why her repair would not last her entire life.

I took this video afterward and then stood in the elevator and cried, thinking of being in this same building when we first saw her on the ultrasound knowing she had Down syndrome, then hearing her heart defect may be fatal, then seeing it change over the weeks into something surgery could repair.

She was born, and we came to this building every week or so for weight checks and echocardiograms leading up to her repair. So much anxiety and prayers that our baby would gain the weight she needed and would make it through surgery.

And here she is. A week or so away from her two-year anniversary of heart surgery…WALKING out of her appointment. We are so grateful. Praise God.

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The last month of so has been filled with pool days, baseball games, and Gracie perfecting how to walk!

Our neighborhood pool opened this past weekend and the kids had a blast playing in the pool. IMG_6853

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Gage played his first season of baseball. Les pitched to the boys and it was so much fun! At the beginning of the season, Gage could not hit the ball at all and had no idea what was going on! It was so exciting to see how much he developed over the season. Gracie loved cheering him on (and also loved squirming to get out of my arms to practice walking! Thanks to my mom and dad for helping with her at the games so I could actually see Gage play!)

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I love this picture because it is Gage batting, Les pitching, and my dad as 1st base coach!

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I can’t wait to cheer for him in more things!

I have so much more I want to share about Gracie, our lives, and what we are learning, so I’ll do a better job of keeping the blog updated. I do so much on Instagram (@jme027), so sometimes it’s hard to remember not everyone sees that!

On a fun note, some of our stories were recently shared in two publications! Click below to read more!

B-Metro article

Alabama Family Trust

 

 

Posted in Down Syndrome, Every Day Stuff, Gage, Gracie

Oh Happy Day!

Today is World Down Syndrome Day.

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I never knew there was such a day until a few weeks after Gracie was born.

But here it is, and I am so happy. It’s a great day to recognize Gracie and all of our new friends, and share with the world that Down syndrome is awesome, that Gracie and her friends are more alike you and I than they are different, and that Gracie and others who happen to have Down syndrome deserve to be treated with the same love and respect that you would treat anymore.

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If you are reading this, you know all this. You probably love Gracie and have had your world opened a little and your heart softened to those with special needs.

So will you do me a favor on this awesome day? Reach out to others with Down syndrome if you see them. Give the parents a high five and tell them they are rocking their “normal,” and tell the kids or adults with Down syndrome, “Happy Down Syndrome Day!” and that they are awesome, and you are so glad God created them so perfectly. You would not believe the impact that has been made on my day when a complete stranger stops me to talk about Gracie.

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Things won’t change unless we push for it. Society won’t see Gracie as worthy and amazing unless we all believe it and live it.

I’m so grateful to God that He has given us our Gracie, exactly as she is. Spreading the word that her life is precious is one of the most exciting and fulfilling callings I could have on my life.

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Posted in Every Day Stuff

Why “They” is Not My Favorite Word

I had an interesting conversation today, that included a statement that I have heard no less than 100 times since we found out Gracie would be born with Down syndrome.

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It goes a little something like, “oh! THEY are so sweet…THEY are complete angels.”

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Now, I am in total agreement that Gracie is super sweet and an angel. However, those are just characteristics of Gracie. Other people with Down syndrome may also have similar characteristics, but so do people who do not have Down syndrome.

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It’s this whole “People First” language thing, that I blogged about here.

When Gracie is lumped into a THEY, then she loses being just our Gracie, and becomes another person with Down syndrome. Does that make sense?

I absolutely know that people say this with the best intentions and are simply trying to find a common ground with me and be supportive, and I can assure you I have said that in the past. As I am growing and learning more though, I am understanding how important it is to simply talk about the person, and not concentrate on their disability and lump everyone that has something similar into one group.

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Thanks for learning along with me, and sharing in our journey.

 

 

 

Posted in Every Day Stuff

Small Steps are Big Steps

I caught the most amazing moment yesterday on video. I have been dreaming, and we have been working toward this goal for a long time.

It may only be a few shaky steps right now, but our Gracie bug is going to walk and run one day. These are BIG steps for her! Six days after her 2nd birthday, she decided she would go for it!

Speaking of steps, the Mercedes marathon was this past weekend. It was such an amazing time! On Saturday, they had the children’s run for all the kids who attend The Bell Center.

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I thought Gracie may take a few steps holding on to my hands, but she walked the entire way!

She even made the news!

On Sunday, some coworkers and friends and I met downtown at 6 am and were bused off to different locations to complete the Mercedes Marathon relay! We did so awesome! It was freezing, but so fun. Our anchor, Paul, was finishing up his 8-mile portion to complete the marathon, and we all jumped in with Gracie and finished as a team. How amazing is it that they yelled her name as we were running (thanks for that, Ashleigh!)!

Thank you to all who donated to support us. We surpassed our fundraising goal and all of that money will go to The Bell Center so they can keep providing amazing care for these precious children!

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The last few days have been amazing. Lots of steps for mommy in the marathon, and now steps for Gracie. I have cried more tears of joy in the last 24 hours over her small, shaky steps, than I have in a long time. Praise the Lord for our Gracie. She lights up our lives.

Gage loved wearing all of our medals from the weekend!

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Tomorrow, we are having a little 2nd birthday party for her!

Posted in Every Day Stuff

Run Run Run!

I am so excited! Some coworkers, friends, and I are running a relay marathon team to run for Gracie at the Mercedes Marathon on February 14th!

This is the picture I chose for the back of our shirts. Don’t you think if you are running behind me (or let’s face it…passing me), that this little face would make you smile?!

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The Bell Center does fundraisers like this to raise operating capital so they don’t have to charge families a huge tuition to receive the amazing level of care and support they provide.

Did you know that if The Bell Center did NOT do fundraising as their main source of revenue, then our family and every family that receives their amazing therapy, care, and support, would pay at least 7 TIMES more in tuition?

We are only $494 away from being fully funded for the marathon. That is amazing! If you would like to support our team as we run in Gracie’s honor, please donate! Any amount is appreciated! $10, $20…whatever!

All donations go directly to The Bell Center, and you are directly helping our family and families like us, who are navigating their new normal. The help and support we have received from The Bell Center has been amazing.

 

https://give.everydayhero.com/us/more-alike-than-different

Posted in Every Day Stuff

3 months

Yikes, blog world. It’s been almost 3 months since our last update. Let me take a moment to do a little updating and then we can move on to regular posts in the weeks and months to come.

We’ve had a vacation of a lifetime since I last posted.

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Disney Fantasy ship

We went to Disney World for a day, and then boarded a Disney cruise for 7 nights of awesome. We ate yummy food, lots of ice cream, watched shows, played in the water, and had amazing family time without the distractions of phones, computers, planning dinners, cooking, cleaning, housework, and anything else that takes away from being fully present. Magical.

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Gage LOVED every roller coaster. I thought he would be scared, but he screamed and laughed through each one. Disney World also has a program called “rider switch” where Les could take Gage on a ride and then get me a ticket so I could take him as soon as they got off. It was great that neither one of us missed out on the rides with him. Well, I missed out on Splash Mountain….but that was intentional.

Clearly, Les and Gage LOVED Splash Mountain. IMG_3137

This is our second Disney cruise and we always leave saying, “this is totally worth it. We will save and not go on little trips if it means we can go on another Disney cruise.”

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Pirate night

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Gage turned 5 on this cruise and we had so much fun celebrating his sweet life.

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The kids even got to trick or treat on the boat!

I am glad they got to have a little Halloween fun on the boat because when we got home in time for Halloween, it was a bit of a bust. It rained all night. I took Gage to a few houses with an umbrella, but Gracie had an ear infection and so we didn’t even take her out.

Gage got a new belt in his karate class. He loves his karate class. Check out my crazy mom face in the back of this video – trying to mouth the words, and smiling ear to ear…and his daddy, sneaking to the front to get a good video…and Gracie, cheering all night after he did his exercises..it’s no secret that we love cheering for him.

We are talking about signing him up for some sports this spring. I can’t wait!

We sold poinsettias this year again to support The Bell Center, where Gracie gets early intervention 2 days a week. Thank you to everyone that ordered! We sold 50 poinsettias and had fun delivering them to our friends.

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We just got back to work and school from a long Christmas break and it was amazing. Not a lot of schedules, lots of pajamas and movie time, baking, and gift giving. Christmas is so fun with kids!

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We got to meet up with Gracie and Gage’s cousin at the Zoolight Safari one night. We love hanging out with them! We weren’t very impressed with the Zoolight Safari though!

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Gracie was not interested in Santa Claus. At all. We had to go to our ENT one day and there happened to be a Santa in the lobby taking pictures with the patients and giving out toys. Of course I felt like I should take advantage of a Santa picture, even though we had an appointment to meet Santa a few days after that. Gracie was not impressed.

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And she did not like the next Santa either. She had a death grip on Les and was not going to let go. Gage did not have one problem jumping up in his lap and telling him he wanted skittles and a pirate costume.

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He was shocked Christmas morning when he got a riding toy for outside! He wore his pirate costume all day (and most days since then!), and rode his 4 wheeler. He looks like he is in a biker gang, doesn’t he?!IMG_3989

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Gracie got a little kitchen for Christmas. I searched long and hard for one for her and I am very happy with what we found. Her therapist wants her to work on pretend play, so a kitchen seemed perfect. This kitchen is adjustable, so it is a great height for her to work on pretend play, as well as reaching, squatting, cruising, and a laundry list of other things we are working on. It can adjust to a taller kitchen as she grows, so even though it might not be the trendiest little kitchen out there, it’s perfect for us.

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Are you telling me that this kitchen is all for me?!

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One last little update. Gracie went in to have her tubes replaced the other day. One was clogged, and her ENT proactively will change the tubes every 1-2 years as she grows, because kids with Down syndrome have small ear canals, which can sometimes lead to more infections, or hearing loss. Her first set has done nicely and has kept the few ear infections she has gotten manageable.

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What do you mean no food when I sign “eat” to every person that walks in this room?!

He came in after the procedure this week and said, “Well, I have some good, but weird news.” He proceeded to tell me that her eardrums had created holes a little larger than the tubes were making, so the tubes were not effective anymore and they did not need to replace them. He said they are grateful when this happens because they won’t have to keep putting the kids to sleep and replacing the tubes. He said in the future, when she starts diving in pools (which she will!), and swimming a lot, we may have to get her ear drums patched, but that would be down the road.

I have heard and read a few questionable things about this, but we will trust her doctor because he is amazing, and just keep a watch on her. The main thing I am always concerned about it is hearing loss, so we have an appointment with the audiologist coming up to make sure she is good. We could not get a good read on her a few weeks ago because of the clogged tube situation. I just want to make sure a hole in her ear drum isn’t causing any sort of hearing loss.

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Chugging apple juice after surgery

I am so grateful that we see our ENT every 6 months, so we can always stay on top of this.

I have a letter to share that I wrote to the high-risk doctor we saw when Gracie was diagnosed. Honestly, he was horrible and had a very negative impact on me when we were going through all the ultrasounds for my pregnancy. I sent him a Christmas card! I’ll save that for my next post!

Posted in Every Day Stuff

Leaps and Bounds

It’s been a while since I posted. Life has been busy with work, play, and therapy – but not full of doctor appointments or anything bad, just normal life!

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Our Gracie bug has been growing like a weed. I mentioned a few months ago and that we were having some trouble with weight gain. We got any medical concerns ruled out, so we met with a nutritionist and worked on calories and some new ideas. We are very fortunate Gracie is a great eater, so she was game for whatever we gave her! Lately, she has been enjoying a diet full of super muffins, waffles with peanut butter, PBJs, avocados, hummus, green beans, carrots, and whatever I cook for dinner! She has gained about 3 pounds since meeting with the nutritionist and we could not be happier!

She has also been well, so that’s a huge blessing. I am so grateful my mom keeps Gracie on the days that I work. She works with Gracie just like I would, and Gracie can nap well and eat well. It is a great situation. Thanks, Nana! We love you!

We have had MONTHS of me wondering if Gracie would ever crawl, pull up, and do many other things. Yes, I know that kids with Down syndrome develop on their own timeline, and I tell myself that all the time, but sometimes it’s still hard. However, it’s true – when a child is ready, they’re ready. And Gracie is ready!

She now crawls on all fours!

And pulls up!

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And tonight, she started this!!!

She is also communicating more!

We are so excited about these recent (as in, she has started all of this in the last month) developments. She works so hard for everything. Sometimes it makes me want to cry because I get so frustrated at how hard she has to work. I wish I could help her, but she keeps pushing and keeps trying, all with an awesome attitude, and she is teaching me so much.

We also attended our first Buddy Walk last week. We had a team with several amazing families I have grown to know and loveĀ  – some since our diagnosis while I was pregnant! It is so amazing to see so many families celebrating Down syndrome. Our team name was “More Alike Than Different.” That is a mantra I have adopted since having Gracie because she and her friends are truly more alike than different. Times have changed, friends. Back in the day, people with Down syndrome were institutionalized. Today, kids begin early intervention at birth and have so many resources available. We have big dreams for our Gracie bug and we will do whatever we possibly can to give her every opportunity her heart desires. I can’t wait to see what God has in store for her life.

Here are some pictures from the Buddy Walk!

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Posted in Every Day Stuff

To the Mom Who Just Got A Down Syndrome Diagnosis:

I know you’re scared.

I was there. I remember sitting in a crowded room, literally shaking when I was on the phone with my doctor as she said the words, “your test came back positive for Down syndrome.”

I remember her trying to tell me how precious these kids are and how her sister loves being a special education teacher.

I remember trying to walk through a parking garage and realizing I was holding my breath, just trying to hold it together until I got to the privacy of my car.

I remember it taking forever before I got to my husband’s office for me to tell him, as I just tried to process…tried to accept. I was just a shell of a person in these moments. Complete shock. Vacant.

And then my husband told me it was going to be OK. He said we were going to “rock this new normal.” I wanted to believe him, but it was hard.

I’d love to tell you that I immediately accepted it and was excited to meet our baby girl and didn’t care about the diagnosis. But I did care – mostly because I just didn’t know. I was naive and had not been around a lot of people with Down syndrome. I made the mistake of googling some information. Horrible idea. We went to a high-risk doctor to follow up. Terrible experience. Smart doctors are sometimes really bad with their words and their bedside manner can be excruciating.

Weeks, months went by and I was sad. Why was this God’s plan for our lives? This isn’t what I had pictured. I did not plan on this. Ever. But it was our future and as upset as I was, I still wholeheartedly believed all life was so precious, made by God, with no mistakes. Nothing but His plan A for our lives.

So we began reaching out, meeting some families in the Down syndrome community and talking to friends. I began to thaw. I met a super cool mommy with a one-year-old baby girl with Down syndrome. I just stared at her and saw how beautiful she was and how happy her mommy was. I thawed a lot more.

I began to be quiet and listen to God. His comfort was always there and His promises were always true and I began to feel better. Still a little fearful of how different our new normal would be, but better.

It’s such a long journey to find out in your pregnancy, and then have to be pregnant. No face to the name you picked. Nothing to picture. Just question marks. Just Down syndrome. It’s scary, and not really exciting – I get it. I understand.

AND HOW YOU ARE FEELING RIGHT NOW IS OK. IT’S NORMAL. Take some time to mourn the fact that your normal is going to be a little different.

But oh my…when she got here. All those feelings and heartache I just told you about – Poof! GONE. Completely.

Does it get much better than this?

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I was enamored with my precious, perfect baby girl. I was so proud of her, so happy to be her mother, so grateful to God that He chose us to be her family. His plan is perfect and He gives really great gifts – better than we deserve, even if they don’t seem like gifts we would pick at the beginning. At this point in our lives, as I read over this post and remember how I felt at the beginning, I feel completely ridiculous. But it is where I was and it is part of our journey – for me to tell you that it’s OK to be shocked and that you won’t feel this way for long.

Proud daddy.

Where you are right now is scary. It’s different than what you expected. It doesn’t make you a bad person for being scared – but I promise, oh how I promise, that this new normal is beautiful. Every single thing is now celebrated, the love is abundant, and the community is amazing.

Gage loves her. He's going to be an awesome big brother.

So please know that how you feel right now is fleeting. It’s new, it’s a surprise, but it’s going to be amazing.

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18 Months Old

Tagged with:
Posted in Down Syndrome, Gracie

We Hate Petechiae

I mentioned in previous posts that Gracie has been having a tough ride on the sickness train the last few months. In addition to not feeling well, she wasn’t eating a lot, and not napping well at school, so she was exhausted and dropping weight. It’s been a pretty stressful time as we make decisions about what is best for Gracie right now.

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The other week, I took Gracie to the doctor to have an ear checked and to show them a random rash that had shown up. Her pediatrician wasn’t in town on that day, but I was able to see another great doctor in the practice. As soon as he walked in and saw her, he said, “well, that’s petechiae.” Immediately my heart sank.

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When I first found out Gracie would have Down syndrome when I was 16 weeks pregnant, Google and I had a horrible relationship. It seemed to only show me the most terrifying and negative information about Down syndrome. One thing I remember reading was that children with Down syndrome seem to be more prone to get leukemia, and that one of the signs of leukemia is petechiae.

The doctor immediately did a physical exam to check for other things and then called for blood work.

Friends, aside from handing my baby over for open heart surgery, waiting those 10 minutes was the most terrifying time I have had with Gracie.

I’m so happy to say that he came back and said her platelet count was good and based on previous blood work we had, he felt good about it and decided the petechiae was popping up because she was sick and that was part of her body’s response. After a few days, the petechiae disappeared, and Gracie seemed to feel a little better.

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This journey and these moments sometime seem like a lot. It is so much for my mind to process and comprehend. So much to keep up with. So much to decide. So much. For someone who is already a bit of a control freak and overanalyzes things to the best of my ability, this journey with Gracie fights those things in me every step of the way – and I am so grateful. As much as I hate the lack of control sometimes, I am truly grateful because I know these are ways that God is showing Himself faithful in all things and showing me that He is the only one in control. He’s showing me that I need to do more resting and trusting – the things I am so bad at doing.

I had a Bible study last night and we were talking about the Exodus and how God’s people were wandering for 40 years. I was reminded that I am to trust in God’s character more than my circumstance – and God’s character is good, true, and loving. I am grateful for moments like I mentioned above so I can have them to look back on and see God’s faithfulness. Even if the doctor would have come back in with different news, I pray I would have still responded with remembering God’s faithfulness in my life, even when the circumstances are difficult. This is probably the biggest lesson God has used my Gracie to teach me. I was so upset and confused when we initially got her diagnosis, wondering how it could be part of God’s perfect plan – but here we are, and as I look back and feel so ridiculous for ever questioning Him, I am so grateful His plan was bigger than me and what I can comprehend.

If I could ever go back, I would beg for Gracie over and over again. He truly gives perfect gifts and knows what is best for His children.

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So here is the blog post reminding me of this. Here is my reminder that I can look back on and remember in times when I forget.

We have decided to pull Gracie out of school for now. I am so grateful my mom is able to watch her while I work three days a week, so Gracie can get well, eat well, sleep well, and get a lot of one-on-one therapy time. We will get her around other kids in the future for some peer modeling, but I am very confident that this is the right decision for her right now.

And to end on a really precious note, here is Gracie realizing that I just turned on her sign language DVD (which she clearly loves)! My favorite part is her little wave when the DVD says, “hi!”

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Posted in Down Syndrome, Gracie
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