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.

IMG_3159

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.

IMG_3146IMG_3126
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.”

IMG_4526IMG_4508

IMG_4646

Pirate night

IMG_4715

IMG_4654IMG_3167IMG_4588IMG_4506

IMG_4584

IMG_4502

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

IMG_4669

 

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.

IMG_3701

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!

IMG_3629

IMG_3862

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!

IMG_3896

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.

IMG_3814

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.

IMG_3882

IMG_3883IMG_3884

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

IMG_3982

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.

IMG_3981

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

IMG_3979

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.

photo 1(3)

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.

photo 2(4)

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!

PicMonkey Collage

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!

photo(2)

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 love¬† – 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!

IMG_4410

IMG_4412

IMG_4415

IMG_4418

Version 2

IMG_4429

IMG_4436

photo(3)

Version 2

IMG_4448

IMG_4450

photo(1)

11227626_986575802610_864735929933580307_o

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?

IMG_3890

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.

photo

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.

photo 2

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.

photo

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.

photo 4

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.

photo 3

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!”

Tagged with: ,
Posted in Down Syndrome, Gracie

One Year

One Year.

IMG_5688

One year since we handed you over to a stranger for them to crack your chest open and fix your heart. It makes me shudder to think about it now. Such a huge, invasive surgery on such a little body. Your heart was the size of a walnut. So many months of anticipating that moment. Sleep lost, prayers cried to let the surgery be successful.

And it was.

photo 4(6)

Praise God that He brought you through the surgery and an amazing recovery. Praise Him that our anticipation was over and the anxiety of having to hand you over and cringe when we thought about what you were going through is over.

The relief I felt when we saw you, even though it was shocking to see how you looked, to know that it was over and went seamlessly Рwithout any hiccups,  was unbelievable.

The sleepless nights through recovery and the pain you were in were few. It was amazing. It is still amazing.

Getting an echo to check her repair!

Getting an echo to check her repair!

I look at you and see, without a doubt, my hero. You are so strong, so resilient. You defy odds. I want to go back to that horrible high-risk OB and shake him and say, “look at this baby you spoke so negatively about! Look at her now! She’s amazing! You were so wrong about how strong she would be.”

Best moment. Cried my eyes out. Still hooked up to a lot of sensors, IVs, and oxygen, but at least we could finally hold her!

Best moment. Cried my eyes out. Still hooked up to a lot of sensors, IVs, and oxygen, but at least we could finally hold her!

Such a special thanks to Gracie’s surgeon, Dr. Dabal. God used you, Dr. Dabal, to make this day we reflect on one of celebration and thanksgiving, instead of grief and heartache. Thank you for your amazing care of Gracie and our whole family. You and the staff at Children’s went above and beyond. Thank you will never be enough.

Heart surgery was such a big deal. I am so glad it’s over, but you continue to amaze me and you work so hard to progress and grow. I’m so proud of you, Gracie bug. I’m so happy we are a year out from open heart surgery and that God brought you through it in amazing fashion – as only He can.

GracieOneYear

So excited we can’t contain our happiness!

Tagged with: , ,
Posted in Down Syndrome, Gracie

Sorry, friends. We’ve been a little MIA.

photo 1

Gracie bug has had her fair share of sickness in the last month, so we’ve been trying to balance that, some new therapy, and busy schedules! About a month ago, she got pretty sick. We were already concerned about some weight loss that had been happening since she turned a year old, and when she got sick, she started losing it more rapidly! Luckily we have stellar pediatrician that makes sure all the correct tests are run so we can rule out the scary stuff that is sometimes associated with kids with Down syndrome, and learned that sickness was something bacterial. We got some major antibiotics and were feeling better soon! Unfortunately, she got sick again this week. This time, it’s a virus, so we’ve been resting a lot!

photo 2Now as for the weight loss, The Bell Center has a nutritionist on board that we were able to meet with quickly. We have ruled out thyroid, diabetes, and heart as reasons for weight loss, so that just left us with her nutrition. We’ve made some changes and we are so grateful that in the two weeks, she has started making up some of those pounds she lost. I hope we are on the upswing and can start packing on some chunkiness! I also hope this current sickness does not affect her weight. We used to chant this before heart surgery, and I think we should bring it back: “Gain Gracie Gain!”

photo copySpeaking of heart, if you didn’t see on Facebook or Instagram we had a follow up with Gracie’s cardiologist, and her repair still looks perfect. We go back in a year! Praise the Lord! I’ll be honest, with her weight loss, I was a little nervous that it was her heart that was causing it, but we are so grateful that the repair continues to be amazing and we have no worries about her sweet heart!

photo 4

We have stayed around the same place developmentally as we were in the last post. Still trying to work on crawling, pulling up, etc. It’s a little hard to find things to motivate her to get moving – well, except for Cheerios! Gage loves helping with her “Cheerios crawl” as we call it. However, he seems to eat about 10 for her 1 each time, so I bet that’s why he loves it so much!

My new favorite thing Gracie does is the “shout hooray!” part of her favorite song. She’s the best.

We have a great neighborhood pool and have been able to take the kids the last few weekends. They both love it! Gage starts swim lessons next month, so I bet he will be a little fish by the end of the summer! Gracie loves her snacks in the shade with her fan blowing on her and her sippy cup near!

photo 1(1)photo 2(1)

photo 3

We celebrated Father’s day this past weekend. I have an awesome dad that I’ve been able to call role model and friend my whole life, and I am so grateful that my babies have that too in my husband.

photoLes loves these kids fiercely. He runs his own business and works way more hours than anyone else I know – but he comes home, puts his stuff down, and engages with his kids as much as possible. Both kids go crazy when he walks inside. Our life is busy and overwhelming sometimes, but I know our kids will never doubt their daddy loves and cares for them in an amazing way. Happy Father’s Day, Les. The only better thing than having you as a husband, is our kids having you as a daddy!

photo 5

Tagged with:
Posted in Down Syndrome, Every Day Stuff, Gage, Gracie

If You’re Happy and You Know It…

The last couple of weeks have been really happy in our household!

Gracie has had a couple of different milestones that we are excited about! She has started holding her hands out for us when she wants to be picked up!

IMG_9890

She is standing on her own for a few seconds at a time (not crawling yet, or walking, but able to balance herself and stand comfortably).

IMG_0122

She conquered the straw cup and now we use those (except at night – I am holding on to the nighttime bottle for my own sake! I love that time!)

IMG_0211

The most exciting milestone was Gracie being able to go from her belly to sitting up and then back down. We have worked on this for so long. I left her in the room to go run her bath and when I came back, she was sitting up! She is becoming much more curious about her surroundings and wants to move so badly. She needed to be able to sit up on her own before her muscles would be strong enough for her to crawl. Maybe soon?

Two other bits of good news is that Gracie’s hips were popping and when we went for a x-ray, the doctor was not concerned and said it would eventually get better! She just doesn’t have enough muscle to cushion. We also got our regular blood work that checks for several different things and all of that came back great as well! Praise the Lord!

She’s been teething a ton and has had 5 teeth pop through in 2 weeks! Check out those teeth!

IMG_0382

We’ve been working hard on our sign language. Gage is the best teacher to Gracie. I heard him in the other room with her the other day saying, “Here, Gracie, do this sign! Cereal! Watch me! You can do it!”

IMG_0356

He is also obsessed with feeding her! He is so good about making sure it’s small bites and not something she can choke on.

IMG_0294

His love and care for her continues to be overwhelming. There is no doubt that God created Gage and Gracie to be brother and sister. His compassion and patience are unwavering. I think a lot of the possibilities for Gracie’s future, but one thing I am certain of is that she will never lack in love from her brother.

I pray that we never forget to remind these little firecrackers that they are amazing, one of a kind, saved by some sweet grace, and can both change the world.

This parenting thing is a big deal.

IMG_0219

IMG_0402

This weekend, I am part of a storytelling event – Arc Light Stories. It’s at 7:30 at the Avon Theater in Birmingham. Come hear me and a few others tell stories about mothers!

IMG_0386

 

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

Moving At Her Own Pace

We’ve been working so hard at therapy lately!

Drinking from our straw cup and learning to go from sitting to standing are some of our focuses.

IMG_9406

IMG_9402We are still working really hard on crawling, getting to a sitting position, and feeding ourselves as well! When we aren’t working on these things, I am reading books, looking up exercises on the Internet…just trying to make sure I am doing whatever I can to make sure I am providing Gracie with every tool I can give her.

That sounds good and well, but honestly, it’s a bit hard for me to have a balance. Since Gracie develops slower than other kids, it’s easy to feel like it’s because I am not doing enough. I share this because I have spoken with so many moms that feel the same way, and it’s hard and sometimes can feel a little discouraging.

However, what I learn every day, is she just may not be ready – and that’s OK. Gracie is moving at her own pace and in this new normal that we live in, there is no room for comparing. Gracie is Gracie and one day she will crawl, walk, run, and communicate, and we will cheer her on each step of the way!

I had one of our favorite therapist remind me last week that I see Gracie every day, so it is going to be harder for me to see progress. She’s right. When I look back through photos, I do see changes!

Like when she learned to hold her bottle on her own (and gets quite comfortable doing it!)

IMG_9641Or when she recognized the snacks I was getting at the grocery store and when I put them in the cart she screamed as loud as she could because she is now expressing her opinion on what she likes and doesn’t like. She’s getting a little feisty…and I like it! Look at that face. She is daring me not to take those away from her!

IMG_9647She is starting to rock her sit ups!

And now, when music plays, she can’t help but dance or clap!

My most favorite change? When she holds her arms out to you so you’ll pick her up. She does it all the time now and I pick her up EVERY.SINGLE.TIME.

IMG_9890So, even though these aren’t the most easily recognizable changes, like being mobile, she’s progressing, and she is doing great.

Easter was such a great time with family. We went to church, took naps, played baseball over at Nana and Papa’s and ate some great food! So grateful we celebrate this day.

IMG_9719 IMG_9734 IMG_9762 IMG_9739

That same weekend, we had a picnic at the local state park.

IMG_9680

These kiddos of mine are still so loving to one another. Sweet Gage goes to visit Gracie in her room at school a few times a day (I think he was asking every 5 mins, but we told him to keep it to two visits a day!). He loves to tell me exactly what happened when he went in the room and how many times she smiled at him. He is constantly hugging her, kissing her, sharing his toys with her, brushing her hair out of her face so we can “see her pretty eyes.” These things never go unnoticed by me. I always see them and thank God that He knew what He was doing when He gave us Gage and then gave us Gracie. Their relationship is just…different.

IMG_9776

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

To the Person Who Stole My Life

I know you’re reading this.

After all, this blog is where you stole all my pictures, happy moments, fear for upcoming heart surgery, and the beautiful story of Gracie’s birth. You simply changed the names, some dates, and some of her birth story. You took your blog down, but it is still there, as well as your personal Facebook page, public page, and the multiple private conversations you had with people pretending to be me. Nothing on the Internet is ever really gone – don’t you know that?

Imagine my shock when I received a message from a complete stranger (who is now MY friend…so thanks for that!), telling me to call her because “someone has stolen your entire life.” Then, I got to the page she directs me to and see a picture of MY sweet Gracie with an announcement that she had died! Then I check your personal page and blog, and see ALL OF MY STUFF.

Shocking. Disheartening.

In addition to being violated, it was so upsetting to see hundreds of people mourning the death of a child. The announcement was shared to pages, and then shared to more pages. I’ll never understand this. Your pathetic reason is probably money, or perhaps you are so desperate for community that you lie to get it. Unfortunately for you, those things are no longer coming to fruition for you.

In a way, I guess I might even owe you a little thanks. Because of your nastiness, I have met hundreds of people. I have had conversation after conversation with amazing moms who want to support me and MY family and I now get to have friendships with them and see their beautiful children grow.

Not you. ME.

I also found out you told people that even though your precious “Piper Grace” had passed away, you had gotten approved for a Down syndrome adoption! Not only that, but it had to be a message from God because her name was “Grace” and when you sent along the picture (which was another picture of MY Gracie), you marveled at how similar they looked.

Unbelievable.

It’s so overwhelming how messed up this is. The idea that you would use MY family, who happens to have a precious baby girl with special needs, to prey on the prayers and support of other families is disgusting. It’s so vile that I can only imagine what else you have stolen from people and what your future plans were to use MY family.

You would think that this is such a violation that I would never blog again, right? You would be wrong. You see, I have met so many people through social media. I’ve talked to families who get a prenatal diagnosis of Down syndrome, or have a surprise at birth, or maybe an upcoming heart surgery, and it is amazing to talk with them and encourage them as they walk down this amazing path. Through this blog, I hope MY Gracie’s life has encouraged others and made it known that God’s plan is perfect and Gracie is more alike than different and all life is precious.

All of this is too much good to be quit because of some gross evilness.

So, you don’t win. MY family will continue sharing stories and our hope and faith with others, and you will continue doing whatever it is you do. And even though you stole these good things of mine and tried to use it to be manipulative, I pray that God uses this circumstance for good – to spread the message that Gracie’s life is precious, that our family is better off with her, and that there is so much hope and joy in the life we live.

As much as I believe you don’t care, please know that your life does not have to continue like this. You are your own person with your own skills and you can turn from this and make other choices. God readily gives forgiveness and guidance to move from this evilness. You only have to ask Him.

Sincerely,

JAMIE, LES, GAGE, and GRACIE

Posted in Every Day Stuff

Running, Crawling, and Tiger the “Baby”

I would say the reason I haven’t updated in a few weeks is because things have been slow and boring, but that is absolutely WRONG.

We have had a really busy and fun last few weeks since Gracie turned one! First up, we attended the Bell Center’s Children Run during the Mercedes Marathon weekend!

photo 4(8)Gracie, along with the other kids that attend the Bell Center, got to run in different heats and get a medal when they crossed the finish line. I loved seeing all the other precious kids be carried like Gracie, or use their walkers or wheelchairs, or maybe even finally be able to walk or run! So inspiring. The Bell Center provides early intervention for a variety of special needs, so there are so many things to cheer for when you see these children. I can’t wait until next year. Hopefully we can get a team for Gracie together to run the marathon or 5K!

photo 3(8)

photo 5(4)

photo 1(14)We’ve been working a lot the last few weeks on drinking from a straw cup. Straw cups are recommended for any child for oral development, but especially for kids with Down syndrome because they already have lower muscle tone. We’ve started with fruit baby food purees in the cup and have gradually introduced milk. She loves the fruit and drinks it well, but the milk still comes out a little too fast. We work at it every day!

photo 2(11)

Gracie isn’t sure how she feels about drinking prunes!

photo 3(9)

Big brother wants to help her whenever he can!

I’ve also been working with Gracie on crawling. Gracie is perfectly content with just sitting or laying on her tummy or back. She cannot get to a sitting position on her own and doesn’t like to try and get from sitting to all fours. It’s a lot of work to try and find anything that motivates her to move!

I tried Kermit…

photo 2(12)

Clearly, she wasn’t a fan. I have rolling balls, a crawling Minnie Mouse, rattles, drums, keyboards…you name it, I’ve tried it! After all those things, look what gets her moving!

You know what else works? A paper towel. A PAPER TOWEL. Those two incentives are basically free. Amazing.

Even though she isn’t crawling, this little lady will find a way to roll and scoot under this chair and then smile at you like she has done the most hilarious thing. I laugh and tell her how funny she is every time.

photo 2(13)

A big change to our days that has happened is Gracie started school last week. My mom has kept her since last May, so that has been a huge blessing as we prepared for heart surgery and then through recovery and the winter months. She has done pretty well at the school so far! It’s a huge adjustment, but we think it will be great for Gracie to be around typical kids and hopefully model their development a little!

I captioned this picture from school with “Mom. Stop crying. Geez. Pick me up later. I’ll save my poop diaper for when you take me home. And stop by the store for more bows and hair bands, because I guarantee this one will be gone when you come back.”

photo 5(4)

For those of you in Alabama, hasn’t the weather been beautiful the last few weekends? We’ve been spending so much time outside playing and Gage has been able to practice his golf. Gracie and I headed out to the driving range in the stroller to watch him practice. photo 2(11)photo 1(13)We usually run into Nana and Papa if they are finishing up playing golf for the day.

photo 2(11)photo 3(8)Gage is pretty wise when it comes to sportsmanlike conduct when playing golf. He saw this on television a long time ago and still remembers! Sorry, Tiger, but this 4-year-old has a point.

Posted in Every Day Stuff