A 2018 Sunset

As 2018 winds down, Rob and I sat down to reflect what this past year has looked like. And more importantly, we wanted to document things we never want to forget from this past year.

I’m not a scrapbooker, we rarely print pictures. Social media documents our progress and this blog knits the highs and lows into a tapestry of our life.

And so this is where our family keeps some of our sacred memories and moments and we share them with you.

I never want to forget


When Reagan would blame everything on her elbow. She’d take a full cup of water, purposefully dump it on her bathroom counter, and point to her elbow and laugh. Or take her plate and dump all her food on the table, as I watched, she would calmly say, “Elbow” with pure comedic genius.

When she learned my mom’s name, Thelma, and started calling her by her first name.

Then she started calling Daddy, “Daddy Robert” and giving us her signature mischievous grin.

She started adding “ie” to words. Do you want a snack Reagan? “Chippies. Orange chippies!!” Which means she wants cheddar and sour cream ruffles. And Huggies. She comes toward us with arms wide open saying she wants a hug, “HUGGIE PEAS!!”

Reagan tries to discipline Bauer when he barks. “No barking Bauer! Sit down Bauer!” Bauer doesn’t listen, which makes me so gleeful, because it gives Reagan just a taste of how annoying it is when someone doesn’t want to listen to you. She also wants Bauer on her bed for bedtime stories and to stay until she falls asleep, and he totally obliges.

She drives her power wheel with no hands and rarely does she look forward. She totally understands how to put it in reverse and turn the wheel, but has determined that driving with hands is 100% overrated.

We are always always impressed that Reagan has her dance routines memorized. And while she isn’t on beat, she knows the moves, and does all of them to the best of her ability. If she’s not feeling a particular costume accessory, like gloves, well…let’s just say it became our Waterloo.

Why you might ask? Why? Why? Why? Why? We’ve entered the why phase. Is it going away anytime soon? No. Why? Well I’d tell you to ask Reagan but then you’ll be 45 why questions in and forget where you started in the first place.

Getting the award for Most Talkative in dance class. (What?! How?! So excited for this one).

Asking to play with her friends by name.

Reagan has come into her own, fashion-wise. She LOVES picking out her outfits, changing them after school, after dance, after painting, after being outside, after her first nightgown, after getting food on any part of her outfit…you get the picture. More than that though, she dresses herself.

Her bravery. This year she connected the dots when she was at the hospital for a blood draw.

One thing I wish I didn’t have to write, but am going to anyway. Reagan’s extreme strong will has broken us more than we’d like to admit. On our very first Kindergarten school field trip to the zoo, Rob was one of the chaperones and I volunteered so we could help each other out. Turns out, we needed one another more than anything. Reagan became frustrated at lunch, and the talking back turned into screams and a meltdown that prevented us from moving forward more than once. We ended up having to leave the field trip, apart from her class and our hearts were so broken and burdened by what this means for our girl, who sometimes has such a hard time with emotional outbursts and behaviors. I cried for days and both of our spirits were so low.

Luckily, we have amazing friends who sat down with us and brainstormed how we could get her attention to a correct this behavior. Since clothes are the #1 thing she loves, we told her that for talking back and screaming when we ask her to do something, her punishment will be having batches of clothes taken away. It was a hot button item for Reagan and one fateful Tuesday morning in December, the plan was put into place when she started talking back to me. I came out with a handful of princess dresses and put them in a trash bag in front of her. Her reaction definitely let me know I had her attention. Unfortunately, her will of steel was still in full force. At the end of the day, three trash bags of clothes and four drawers were removed from her room. I honestly felt for all of us. I don’t want to do this, it makes me cry that we have to. Reagan can earn her items back with good behavior. We are filling up a mason jar of fuzzy pom-poms, affectionately called “warm fuzzies“. Reagan can earn warm fuzzies for listening, having good behavior and being kind. In just a day, the jar was half-full.

This brings me to another thing we are keeping in mind. Reagan is being weaned off many neurological medications. She’s currently off of two completely. Everyone’s parenting journey is different, and while I’m being super candid about ours, her struggles aren’t lost on us. In the same respect, we still have to parent and discipline. Even though she has trouble speaking, is being weaned from medications, has a genetic disorder and suffers from irreversible brain damage, she still has to be disciplined. And that is something we struggle with. Is it too much, not enough? I don’t know, she’s our first and only child and so we’re doing about as much right as we are messing up. But we’re doing all we can.

Reagan loves art. She started coloring more in the lines and her art table is a place of peace and calm. Art helps Reagan calm down, and she loves to create things.

We’re adding a larger patio to our house, Reagan tells everyone it’s for her bubbles.

We had a friend make a new table and bench, before it came Reagan would sign “different” and tell everyone “new table“.

Reagan used to sign “kind” and now she says we are “kind Mommy and kind Daddy.”

Reagan prays at night, she asks God to help her to talk. And she prays for her friends and Mommy and Daddy and MéMé and Bauer.

After a particularly tough day of discipline, she read her Bible until falling asleep.

Her love and loyalty to the little friends she’s made and kept for the three years she’s known them.

She helps with family art projects and the art that Rob makes for our house.

It’s not green or blue, it’s “Aqua” and she’ll correct you.

Reagan saying Obama for umbrella.

When we ask Reagan a question, the answer is always no. Then we wait, and she’ll tell us what she really means. We’re working on having her first answer be the one she wants to say.
“Do you want pizza, Reagan?”
“NO!”
“Yeah…yeah!!! YEAH DADDY!!”

The only word she can say that starts with an S is Snoopy.

Reagan’s first haircut in a real salon.

Loves playing hide and seek but is terrible at it. She says, “I’m here!”

If someone else burps, she says “Excuse Me” for them.

One of my most favorite memories is Reagan being a flower girl in a wedding. She walked down the aisle by herself, she held her flowers up to the sky at the altar, and walked into the reception like everyone was there for her exclusively.

Her confidence.

She climbed a ladder to the top of a playground all by herself.

Her love for Santa and for Halloween. But she never eats her halloween candy.

This year we were able to be at the beach for hours and she would cry when we had to leave.

Losing three teeth and only finding one.

Positive flying experiences.

Reagan saying “I’m a miracle.”


I recently read a passage from Streams in the Desert by L.B. Cowan. It talks about taking the things the enemy has used to wear you down and bring against you, the war that he’s waging against youto take that suffering, and turn it into spoils.

Romans 8:37 says that we are more than conquerers through Christ Jesus. And being more than a conquerer in war, means driving the enemy from your field, taking all the food, supplies, ammunitionit’s the spoils. And so much war has waged in our life, on our field, through our daughter Reagan. And with Jesus, we are fighting back, taking our spoils and being more than conquerers.

L.B. Cowan compares the storms of life this way: “Like the eagle, who sits on a crag and watches the sky as it is filling with blackness, and the forked lightnings are playing up and down, and he is sitting perfectly still, turning one eye and then the other toward the storm. But he never moves until he begins to feel the burst of the breeze and knows that the hurricane has struck him; with a scream, he swings his breast to the storm and uses the storm to go up to the sky; away he goes, borne upward upon it.”

There are many times that I hate our storm and the war we have to fight. But knowing that the storm can help me go higher, and knowing that there are spoils from the war being waged that we can appropriate for our family, allows me to look back and see, that we’ve actually done that, and continue to do that.

All the things I don’t want to forget this year…these are our spoils, and we’re not done.

De-emphasizing GA-1

This blog is written by both Rob and Anne-Marie. Indented and italicized paragraphs are written by Rob. 

We visited the Clinic for Special Children, in Lancaster, PA. There’s a reason we decided to come here, in the middle of Pennsylvania, Amish community. There’s a man here, Dr. Strauss, a world-renowned specialist in GA-1. He helped create and redesign the formula Reagan drinks, he’s helped with the protocol for treatment and during our meeting, he said things that turned our world upside-down and kept it spinning long after we left.

In the middle of this corn field, is a cutting edge facility filled with people who have seen more GA-1 patients than anyone. You see, the Amish are more prone to genetic disorders due to their small genetic profile. And Dr. Strauss has treated hundreds of children with GA-1 not just in the Amish community, but throughout the world.

He eloquently explained GA-1 and the part of the brain that GA-1 attacks, comparing sections of the “basal ganglia island” to a pizza, with a cheese part and a crust part. He explained that there’s only one type of cell, “located in the crust” and this is the only location in the entire body where this type of cell is located, and that GA-1 only seeks out this type of cell.

After looking at Reagan’s MRI and going through the history of how her crisis unfolded, he confirmed that the manner in which she collapsed is how GA-1 works and that it’s a terrible disorder. He also said that had we done an MRI the day before her crisis, everything would look normal. Her MRI on the day of her crisis proves it was an isolated incident, and shows that the one type of cell this disorder goes after, was destroyed.

We continued our discussion, he said the greatest risk for damage like this is until the age of two. After two, the risk declines greatly, which we already knew. But, what we didn’t know is that if there is a crisis and GA-1 destroys the one type of cell in the crust of the basal ganglia, it’s gone. There are no other cells like that in the brain or the body, and the risk for another crisis is essentially removed.

Now, no one will come right out and definitively put on paper that a crisis will never happen, ever again, but as we spoke to Dr. Strauss our level of stress and anxiety started to ease up. Yes, Reagan will have GA-1 forever, it’s in her DNA, but we can begin de-emphasizing it’s impact in our lives.

Looking back, planning and bringing home Reagan on day two of her life was essentially like moving into our newly constructed dream home. On day four, when we received the devastating news of her genetic disorder and learned about this terrible thing called GA-1, we essentially boarded up the windows and barricaded ourselves inside, as if we were preparing for a category five hurricane. When Reagan had her crisis, our new and perfectly planned home was damaged and we dug in deeper—or to use a phrase only Floridians say during hurricane season, we hunkered down.

But at this appointment and to continue with the analogy, Dr Strauss began to take down the boards that covered our windows to show that the storm had passed. Yes, the storm’s damage had been done, but the damage HAS BEEN mended in a new way, this time with character and uniqueness

GA-1 doesn’t need to define Reagan, and up until this point it has been defining so many of our waking hours.

Now our position is slowly shifting; if she doesn’t drink all her formula, it’s OK. If she doesn’t meet exactly 20g of protein a day, it’s OK. So many times we’ve felt the pressing weight of not meeting a specific protein goal, so much so that we end up begging Reagan to ice cream or cookies to help her meet the protein goal. He gave us a wide range of 18g – 25g of protein for a goal. Just writing that makes me feel more relaxed. This approach, is mainly due to her age and the lowered risks, but also because she’s had a crisis and that particular type of cell is gone.

Dr. Strauss said Reagan reminds him a lot of another GA-1 patient of his. She recently turned 19, is going to college and just got her driver’s license. She also has a movement disorder and had a crisis.

“You will be surprised at how independent she will be.”

I could have cried when Dr. Strauss said that.

Then, we talked about the medicine. He wanted to know why she was on such a concoction of neurological medication. Rob and I discussed that it was due to her movement disorder and everyone being fearful of more seizures. We just thought this is what you do. He colored in our thinking by telling us it’s because when doctors see a problem, it’s like a popped nail and they can’t help but grab a hammer to fix it.

Seizures are a common occurrence during a metabolic crisis, and Reagan had three. But she hasn’t had any since then. We’ve driven ourselves crazy wondering if she hasn’t had seizures due to the medication she’s on, or is it because she’s not prone to have them at all? No one has felt comfortable taking her off the medications because what if she has another seizure? Dr. Strauss likened that line of thinking to walking around with an open umbrella over your head and rain boots on every day because it might rain.

The months following Reagan’s crisis were understandably dark times for both of us, and even though we have emerged from that darkness, it has stuck with us. For the past 4+ years, we celebrate every gain Reagan makes with extreme joy, but there is always a part of us that wonders if it will be taken away. When will GA-1 pull the rug back out from under us? When will this all come crashing back down? Living like that has taken an unseen mental, physical and emotional toll on both AM & I. And when Reagan gets sick, like every child does, we retreat within ourselves, preparing for the worst.

But hearing the words from Dr Strauss “begin de-emphasizing GA-1 and its impacts in our lives” was something freeing for both of us, as if someone had removed the albatross from around our necks. Do we still need to watch what she eats, make sure she drinks her milk (formula), and be cautious when she is sick? Absolutely, but that sort of normal is music to our ears. We can do that.

“Get out from under this dark cloud that her crisis has had on your life. It’s over. It’s never going to happen again.” Those words spoken by Dr. Strauss to us were like a crisp breeze over our face.

I get nervous writing something with such finality and while those were his words, what if he’s wrong? There are others in the medical community of genetics who aren’t so willing to provide guarantees. In medicine and in life, there aren’t guarantees and we understand that. But the freeing feelings Rob and I felt as we sat in that patient room were unmistakable.

What now?

Well, we’re going to start systematically weaning Reagan off her neurological medications, there are four of them and this could take a few years to accomplish. Two things could happen, 1. her movements might increase and 2. she might have a seizure.

If her movements increase, we’ll see by how much or if she’s able to work through them. The benefit of removing some of these medications is her clarity can increase, her behavior and mood could improve, maybe her talking too. The risk and reward have shifted. Before she couldn’t control her arms from flailing, and now she’s trying to run and do ballet twirls and pliés all over the house.

And we’ll pray she doesn’t have any seizures. But we’re putting the rain boots away and our house isn’t going to be boarded up anymore. GA-1 is here to stay, and we have a healthy respect for it, but we’re ready to de-emphasize it in our lives and try to live a more normal life.

Across the World

Four years ago, if you told me that we’d travel to another country WITH Reagan, I’d say you’re crazy.

But here we are, on top of mountains, doing things we never even dreamed our family could partake in.

This trip is exceedingly, abundantly more, than we could have ever imagined. Guys, there’s snow, in JULY!

We’re in Whistler, Canada. We went through customs with Reagan. We flew almost 8 hours and drove 2 1/2 hours to get here. We took two gondola rides, on cables, above mountain tops to get here.

I’d like to point out, it’s not just any gondola ride. It’s the Peak to Peak. It’s the longest gondola ride, almost 2 miles, and the highest lift of it’s kind, with an elevation of 1,427 feet. It’s some sort of record. Which is ironic because I feel like we’ve broken a life record just to make it here.

As I looked across the horizon and over so many gorgeous mountain tops, I couldn’t help but think about how far away we are from what we’re used to, and how scary that can be if you’re a parent to a medically complex child.

I am SO proud of us.

Am I nervous? Yes!! I keep wondering how we’re going to help Reagan meet her food goal by winging it, especially on top of a mountain. Evidently Canada doesn’t want to forget their vegetarian friends because lo and behold, there was a veggie burger just waiting for us after our first gondola ride, in all of it’s quinoa glory. I was shocked.

Can I tell you an honest truth? If you’re in a tough spot in your life right now, I know and I understand, that you don’t think a mountain range is in your future. The climb might be arduous. No, it will be arduous, it’s a mountain top we’re talking about! But you can make it there, God will help you. And boy, when you do…it will it be exceedingly, abundantly more than you could have imagined.

We literally made it to the very top of a mountain with our daughter today. I’m amazed.

What a Difference

What a difference a year makes!

You hear people say that all the time, because in hindsight, problems or circumstances can be completely different in a year. What we don’t often hear is what a difference three years makes. Because that seems like an eternity, and it’s too hard envision all the work that will have to happen between now and three years from now. Can’t it just be a year of work and everything get neatly tucked into place?

God does some of his greatest work in the struggle of the desert. You might not think God is in the desert, especially if you’re relying on your own faculties to get through it. The beauty of the desert is there’s NO way you’re going to feel fed or watered unless you look up to who can provide that. The desert is survival mode for everyone and everything. But the desert is also where God is most relied on and where he’s most desired. I think that’s why he puts us there to be honest.

The desert is for two things 1. developing something within us or 2. releasing something that has a grip on us.

Do we need to develop perseverance, conviction, trust?  Do we need to release control, possessions, pride or something else that’s not helpful? You can’t hold on to unnecessary things in the desert, because if it’s not helpful for survival, it’s dead weight and it has to go. The only thing you can hold on to is Jesus, the desert makes it abundantly clear who you need and where your eyes must shift in order to gain strength and hope.

Three years ago

We would pack up Reagan’s walker and go to the mall. Reagan couldn’t walk straight and being on wheels would sometimes make her push off her feet and go in circles, which she found hilarious. To be fair, it was super cute and funny but it also made me wonder, will we ever be able to walk the mall together? Three years ago she could only walk the length of about four or five stores and we couldn’t go into any stores because they’re not set up for a child in a walker who has trouble going straight. Honestly, my soul hurt so bad to go to the mall when we had to bring the walker. I had to mentally prepare…we will get stares, children will point and look to their parents for an explanation. The parents will look at us and shrug as if to say, “I don’t know what to say, please forgive me.”

Today

Reagan is walking the mall back and forth, going into any store that looks interesting and having a GREAT time. This photo is angelic. Her shadow reminds me that angel armies have been protecting her, God has held her and us while we’ve been in the desert, and as we emerge into a land that has the fruit and riches of hard work, it is different than we expected, but we are here, still on the path God set forth; we didn’t arrive on our own strength or laurels. God paved the way, God gave us the strength so let me credit who it IS owed to so you know what I mean when I say, what a difference three years makes.

If you’re in the desert, please don’t give up. There are things you can only learn and develop within yourself while you’re in the desert. There’s no other place quite like the desert to learn perseverance or trust. There’s no other place quite like the desert to develop the amount of empathy or understanding God would like to see in you. You may want to rush it, but the desert is arduous, designed that way for you to stop trying to fix things on your own and rely on God. This process can’t be rushed and neither can gaining the character traits that are being developed inside of you.

Seasons

Remember, being placed in the desert is a season, being placed in a meadow with flowers is also a season. There’s something to be gleaned from each season of life that God puts you in. I can look back to the harder seasons and while I didn’t love being there, I can be thankful and grateful for what I learned there. Keep going. Better seasons are ahead my friend.

 

Being Different is OK

One Year Ago.

Part 2. Exactly one year to the day.

Do you ever have those moments where your whole heart breaks in two for your child? It’s happened a lot, but this past weekend I realized I needed to up my parenting game on the spot. It wasn’t just any teachable moment, it was a defining moment, a remember forever kind of moment.

Reagan was sent to timeout in her room for pulling and hitting a coworker who was over at our house, she goes to her room crying those hot tears, with her hand over her mouth and screaming because she knows she’s not supposed to do that. And when she realizes those things, this is often the scene.

I️ followed Reagan into her room, which I normally wouldn’t do. I’d allow timeout to happen for a few minutes and then talk to her, but this seemed different. I don’t know why, it just did. Through our conversation I️ asked her a series of questions like, do you know you’re not supposed to do that? (yeah! *tears rolling down her face*) Are we supposed to hit and pull our friends? (NO! *hand over her mouth and head buried in my shoulder*) Would you like it if someone did that to you? (NO! *bottom lip out as far as can be*)

I don’t know how the conversation got where it went next, but Rob and I have talked with her before about this, and she knows and we know that it’s hard for her to control her emotions and her movements due to *insert all the things* here. I remembered that she had used the word different a few times on her talker recently. So I asked her if she liked herself. And her head just fell and her lip was out and she looked me in the eyes and said no and buried her head in my shoulder. She didn’t like herself. She didn’t love herself.

Reagan, do you feel like you’re different? *sniff, sniff, big belly scream* “Yeaaaaahhhhhh!”

My heart broke into a million pieces. First of all she’s telling me this really hard thing to communicate for any 4 1/2 year old. And, I’m so glad she can communicate her feelings, but I hate that this is the feeling she’s having. She answers that things are hard for her. It’s hard for her to communicate and she’s frustrated that it’s hard for people to understand what she’s saying.

She knows sign, but she learns faster than us. There have been a few times when she’s signed and we don’t know what she’s signing.

Most recently it went like this:

Rob: “Are you signing something?”
Reagan: “YEAH!”
Rob: Does Daddy know the sign?
Reagan: “No”

And we proceed to guess what she’s signing until we get it. That time, she wanted a princess story from Daddy. She had just learned the sign for princess one day earlier and it hadn’t registered with us yet.

So in this moment I’m trying to figure out what to say to her impressionable heart and mind as I’m fighting back tears. I tell her “God made you perfect and you don’t need to be like everyone else. Being different is OK, even though it might be tough sometimes.” She wasn’t really loving that idea…so I tried again.

I told her about when she was sick, but in more details. She’s been telling me that she wants to be a Dr., specifically a baby Dr. when she grows up. So I told her some of the Dr.’s that saw her in the hospital were wrong about what she would be able to do. I told her the Dr’s told Mommy and Daddy she would never walk or talk or eat. And they were wrong.

Then I️ explained to her what a miracle is, who is responsible for miracles and that she IS a miracle. Miracles are different AND awesome. She knows God made her and that God loves her. She signs that God and Jesus live in her heart. She’s receptive to all of that. At the end I ask, is it OK to be different? She had mixed feelings about it still, but the wheels were turning about being different and being cool and how they can coexist.

Being different was the theme of the week. We drove to see Christmas lights and pointed out that they were all different, and that they were still beautiful. “Reagan, don’t you see how being different is awesome!?” She was 50/50, not quite convinced.

Having a child who is almost five that has difficulty expressing all of her thoughts, imaginations and dreams is really hard. The other day she used her talker to say “I am mad” and “I am sad.” And she cried as I asked questions that related to the signs she was giving me and what I thought she was saying and all the surrounding events.

Sometimes she wants to say something funny, most recently it was “I like Elf and toilet.” She then smiles with her fingers in her mouth as she laughs and waits for me to get it. Although it took me a little while to figure out, I learned she was referring to a scene in Elf that she finds so funny and wanted to tell me.

Buddy the Elf is different, and so loved. Reagan liked that comparison 🙂

We so badly want her to talk and to communicate with her in any way possible. We are looking to take sign language in 2018 as well as sign her up for more intensive speech therapy. It truly is a blessing to be able to talk with your children and we hope and pray for that continuously. If you think of it, please pray for that as well.

xoxo

Beauty From Ashes

Well November flew by! We stayed super busy and so much happened, I truly don’t know how we’re at the end. Below is as concise of an update as I could fit in. As always, thanks for your prayers and continued support!

Brain Plasticity Therapy

This is a biggie. I know a lot of you were closely following Reagan’s intense therapy sessions at the Plasticity Brain Centers here in Orlando. She did three, hour long therapy sessions for five days in a row to work on strengthening the weaker or more immature areas of her brain due to her crisis. Through a series of exercises, we were able to see amazing improvements. For instance, the light board that she worked on — the first day when she came in fresh, she averaged about five seconds in between each light she hit. By day three she improved almost 50% and by the last day, she improved 58% since day one.

Eye contact – her ability to maintain eye contact really improved. After a visit to her eye Dr., he said she still needs to wear her glasses, and she’s still far-sighted, but our hope is that with continued exercises at home and patching her right eye, that her left eye will gain strength. Either way, she looks so cute in those pink glasses!

Talking/Communicating – this is the area that has taken the longest to come back since her crisis. Since therapy, we have seen an increase in her wanting to try to talk more and we are able to more clearly understand some of the things she says. While at therapy, I asked if she wanted to do something together and she said, “together”. The other day while watching one of her favorite shows, Daniel Tiger, one of the characters said, “I like purple”.  Since this is Reagan’s favorite color, she looked at me, pointed to herself and said, “I like purple, too”. In addition to that, one morning (after a 4 a.m. wake up call) Rob decided to take her to breakfast so I could sleep. He asked what she wanted and she said, “aahh-ffull” for Waffle. Funny that it sounds like awful, because that wake up time is definitely awful. She also said “Mr. Craig” when she recognized the Dad of one of our nannies. Santa has also been a favorite word lately. She says “Anta” and then gives herself a hug…because she wants to give Santa all the hugs. And Reagan has made it super clear that she wants Daddy to take her to see Santa, not Mommy. I’ve asked a bunch, definitely Daddy, not Mommy. At least she’s consistent, and she’s a total Daddy’s girl, which is so sweet.

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Santa 24/7. She’s a helper elf, too.

Eating – We’ve seen huge improvements here. The volume of food she’s consuming is awesome. At the Waffle House she ate 42 grams of waffle. I know 99% of you reading this don’t weigh your kids food…if you do, you’re part of my GA-1 FB group, but that’s a lot of waffle for Waffle House for Reagan. It’s probably a third of a waffle. She’s eating full servings of potato pancakes at a local restaurant in town, she ate stuffing for Thanksgiving and this morning she ate a quinoa breakfast pattie WITH a waffle on the fork. I mean, that’s weird and awesome, I’m so proud of her.

Textures – Guys, the sand and salt water used to literally make Reagan vomit. If it got in her mouth, she would start retching and lose whatever she ate earlier in the day. She hated being in the sand. But now, I can’t get her down to the beach fast enough, and she digs and plays for hours. Four months ago we brought her to the beach and had to leave almost immediately, but now we can actually sit on the beach and enjoy watching our daughter play in the sand or in the ocean.

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Sleep – I mentioned that recently she’s ready to party around 4 or 4:30 a.m. That’s new…so we’re working on stretching that to when the sun rises at the earliest. Until then, we’re drinking a lot of coffee and headed to Waffle House evidently.

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Walking strong!

Orlando Ballet

Lastly, I spearheaded an amazing project with the Orlando Ballet, Nemours and Orlando Health. Below is the video in case you haven’t watched it.

After all of that, I really feel that this verse has been ringing true in my life recently. I’m so thankful that God is giving us beauty in place of the ashes, because for so long it felt like just ashes. I’m sure watching the improvements from the outside is amazing, and you can probably see more than we can on some days. But living in hard moments of loss every day can be tough. So for now, I will take all the beauty The Lord wants to give my family and I’ll pray for heaps more it it.

“To those who have sorrow in Zion I will give them a crown of beauty instead of ashes. I will give them the oil of joy instead of sorrow, and a spirit of praise instead of a spirit of no hope. Then they will be called oaks that are right with God, planted by the Lord, that He may be honored.” – Isaiah 61:3 (NLV)

Reagan is Going to Brain Plasticity Therapy!

This past Tuesday Rob and I toured the Brain Plasticity Center here in Orlando. We spent two hours talking with them and looking through their facility. It was so amazing to hear testimonials from the staff in regards to how some of their youngest patients have responded to this therapy. The best way to describe what this therapy is in laymen’s terms is that it’s physical therapy, for the brain. Through a series of exams, the Dr.’s can tell what side of the brain is weaker than the other, and what part of the brain needs strengthening.

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Truly this is a pioneering treatment for people who have had traumatic brain injuries. Dr. Carrick discovered and then created this type of therapy…within the past few years he received his third PHD at Harvard Medical School in medical research so he can continue furthering this type of treatment and therapy. Here in Orlando, Dr. Antonucci is the clinical director at the Plasticity Brain Center. Dr. Antonucci worked directly under Dr. Carrick as his right hand man and first assistant in treating patients for many years. These Dr.’s are trained, well educated and are changing lives. We are very excited to bring Reagan.

Recently I was able to speak with Jenna, she’s the mom of James, a young boy from South Florida who experienced a near drowning. I’ve been following her updates for a couple of years on FB, you can check their page out here. They recently took James to the Plasticity Brain Center for a second time this past month. Through our conversation, comparing our therapy experiences and gains for our children, she stated that taking her son to the Plasticity Brain Center has brought about the most significant gains in James. You can’t argue with that, with a family who like us, has gone to hundreds and hundreds of therapy and Dr. appointments.

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That is why we are asking for your help in raising funds for Reagan. After touring the facility, Rob and I determined we would schedule Reagan’s week of intensive therapy. We are scheduled for one week in November before Thanksgiving. We were able to proceed because of your help! Since posting our fundraiser, over $1,500 was raised in about five days, which was exactly the deposit needed to secure a week of therapy for Reagan. You guys didn’t know that, but we felt that was God giving us the green light to proceed. We know God is opening these doors and we are so fortunate to have this world class treatment and therapy center within 15 minutes of our home. We are having faith that the remaining balance will be provided.

There are four ways you can help:

  1. Donate here on our fundly page and help us reach our goal by November to pay for this therapy.
  2. Share on social media.
  3. Attend our painting fundraiser for Reagan on October 26. You can RSVP here and bring as many people as you want; 50% of the funds will be donated to Reagan
  4. Contact me if you would like to participate in an Instagram Auction. If you look at the love_for_Reagan instagram, you will see two previous auctions. One was an auction with handmade items and the other was a sports auction with memorabilia donated. We are open to all donations for the auction.

Sometimes I watch Reagan and just think: “You don’t know it baby girl, but we are fighting for you in so many ways. A lot of people are fighting for you, Reagan…and praying for you too. And everyone wants to see you succeed, everyone wants to see you talk, everyone wants you to prosper into one fiery and independent little girl. You don’t know it yet, but so many people, thousands of people, are a part of your story because they are rooting for YOU.”

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We are so thankful for you all, for your support, your prayers, your time, your donations. Everything.

xoxo

It’s a little dusty

I feel like there’s been a big elephant sitting on the blog and I’m going to talk about it.

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About two months ago, I wrote about how we were going to Georgia to attend a healing conference in hopes that Reagan would be 100% healed by God. Well, I didn’t make a huge announcement about Reagan being instantaneously and miraculously healed so I gather anyone who’s a regular reader here kind of figured it didn’t happen.

But God did show up. My mom was healed of arthritis in her hands and she felt so guilty. “That’s not why we’re here,” she told me with tears in her eyes. But who can say “no” when God’s working a healing? She used to have to use two hands to move her gear shift in her car, but now she doesn’t have to.

A lot of people prayed over Reagan and got to hear her story and listen to the many miracles God has already done in Reagan’s life. It was an awesome trip. Reagan did amazing enduring such a long car ride with NO accidents for a newly trained potty user. We were so proud of her. We had the most amazing group too; if we had to do it all over again, knowing that Reagan wouldn’t be miraculously healed, we would 100% do it again. It was one of the best trips we’ve had as a family since Reagan’s crisis. Of course we were disappointed we didn’t have the exact result we wanted, instantly, but we were obedient in going…God’s ways are higher, we just have to take the steps he asks us to.

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New things

Reagan started a new therapy that another GA-1 mom recommended and I have to say it’s pretty incredible. I don’t think I will be able to explain it succinctly here on the blog, so here’s a link, but I’ve seen actual changes in Reagan at therapy, during therapy, and following therapy. For instance, she lost her balance, balanced on one leg in a cheerleading like move for about four seconds, and then repositioned her hips and body to continue walking. The therapy is supposed to help organize connections through out her body to her brain, which in turn would help everything, eating, talking etc. Other improvements we’ve seen is her ability to self feed, and a little more vocalizations/verbalizations. The other day she walked into our room when she woke up, went to Rob and said Dada, and bathroom. We thought we were dreaming, but we both heard it. Rob and I drive to Melbourne, FL for the therapy, since that’s where the closest person who does it is located, and we do two, hour long sessions in one day, broken up with an hour in between for a break. We are very excited for what’s to come.

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The other thing we are looking into is a brain plasticity center here near UCF, here’s their information. I’ve been in communication with Reagan’s Dr.’s about it and recently attended a lecture by Dr. Antonucci to learn more information. From my discussions and emails with the center and the Dr.’s it seems this could be a valuable treatment for Reagan. They focus on exercising the brain to help stimulate the brain and I’ve posted a video below to help you understand what they do. The lead Dr. at the Brain Plasticity Center, studied under Dr. Carrick for two years and brought what they do, here to Orlando.

The cost for treatment is expensive, $7,500 for one week of treatment. Treatment includes three therapies a day for five days in a row. We are working toward pursuing this treatment for Reagan, and have updated our fundraising page for this particular therapy, and we would like to do another auction. If you’re interested in participating in another Love for Reagan auction, please comment on this blog and I will follow up with you so we can start putting it together.

That’s all we’ve got. Thank you for following and for your support. It means so much.

xoxo

The Well

God has been stirring in me for a while. There’s a lot I want to share; it requires a lot of boldness, which I know I have, but this feels like a lot even for me.

A couple months ago, a friend of ours told us of a man who has a healing ministry who was going to be in the United States this year.

“He’s coming in July,” Bert said, “and I want us all to go and take Reagan.”

Rob and I looked at each other and immediately said “We’re in!” practically in unison.

So preparations were made, a posse was put together to take our daughter to a man who is known to have a gift of healing.

Pause.

I’m terrified to put this on the blog for lots of different reasons.

What if God doesn’t show up?
What if God doesn’t heal her in the way we want her to be healed?
What if we come home disappointed?
What if nothing changes?
What will people think?

I can’t care about what people think…and maybe that’s the thing that’s driving the rest of the list, other than fear and worry. Worry that I don’t have enough faith or belief.

Mark 19:14-29 has been on my mind. There’s a boy’s father asking Jesus to help his son who is possessed and has been robbed of his speech. The boy’s father is literally at his whits end and asks Jesus to have pity on them and heal his boy, “if you can, Jesus,” he says. 

IF? Jesus repeats it back to him as if his question was as ridiculous as asking if LeBron James can jump high…of course LeBron can jump and of course, Jesus can heal.

“‘If you can’?” said Jesus. Everything is possible for one who believes.”
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EVERYTHING is possible.

1. Walking – a prayer that has been prayed over and over, it has been answered.
2. Eating – a prayer that we’ve prayed and continue to pray. Her appetite for food has never been bigger!
3. Getting off the g-tube for feedings – the feeding pump has been put away in another room and not taken out for almost a month. She drinks all her formula. Some days it’s more of a struggle than others, but she accomplishes it and has been doing it for weeks.
4. Potty trained – I still can’t believe I can write that.

Each time Reagan would do something new, we would praise God in wonder and amazement because it would be another thing the Dr.’s were so wrong about. But, is it too bold to say, we want more Jesus…?

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Should we be satisfied with what’s been restored? Or should we keep pressing in, asking for more, asking for 100% wholeness.

In Mary Healy’s book, Healing: Bringing the Gift of God’s Mercy to the World, she says: “Nowhere do the Gospels record that he instructed a person simply to bear the suffering assigned to them. In no case does he indicate that a person is asking for too much and should be content with a partial healing or no healing.”

Healy goes on to say that when “reading the Gospels one gets the strong impression that Jesus was not only willing but eager to heal.” The scope of his healings were unlimited.


“So the news about Him spread throughout all Syria; and they brought to Him ALL who were sick, those suffering with various diseases and pains, those under the power of demons, and epileptics, paralytics; and He healed them.” – Matthew 4:24

“When evening came, they brought to Him many who were under the power of demons; and He cast out the evil spirits with a word, and restored to health all who were sick [exhibiting His authority as Messiah]” – Matthew 8:16 & Mark 1:32. (Mark 1:32 states a steady stream were brought to Jesus and he healed them all.)

Jesus went through all the towns and villages, teaching in their synagogues, proclaiming the good news of the kingdom and healing every disease and sickness.”- Matthew 9:35

“And when the men of that place recognized Jesus, they sent word to all the surrounding country. People brought all their sick to him and begged him to let the sick just touch the edge of his cloak, and all who touched it were healed.” – Matthew 14:35-36

At sunset, the people brought to Jesus all who had various kinds of sickness, and laying his hands on each one, he healed them.” – Luke 4:40

“and the people all tried to touch him, because power was coming from him and healing them all.” – Luke 6:19


Back to my above list of fear and worry. When I look at what God has done, I know that God shows up. I know that Jesus heals. I know that God doesn’t disappoint. And I know that anyone Jesus has an encounter with is forever changed. I point back to what God has done, to know that he’s faithful in everything he does.

Ever since we made the decision to take Reagan to this man with a healing ministry, I’ve felt exactly like the parents in the Bible who brought their children and pleaded with Jesus to make them whole.

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What lengths will a Father go to heal his children? Not just Reagan’s Father, but our Heavenly Father?

I think of Jairus’ story in the Bible; he was a well known and respected leader in the synagogue. His daughter was dying and he pleaded with Jesus to come to his house to heal her. As Jesus began to make his way, another woman who was afflicted with a bleeding issue for 12 years, touched the fringe of Jesus’ garment and was healed. In the commotion of that, Jairus’ receives word that his daughter is dead and his friends tell him not to bother the Teacher anymore.

“Overhearing what they said, Jesus told him, “Don’t be afraid; just believe.” – Mark 5:36

Jesus is like, let’s roll Jairus…we’re going to your little girl.

“he took the child’s father and mother and the disciples who were with him, and went in where the child was. He took her by the hand and said to her, “Talitha koum!” (which means “Little girl, I say to you, get up!”).  Immediately the girl stood up and began to walk around (she was twelve years old)” – Read the whole story here

For weeks, I’ve been thinking of all these stories. And then doubt would creep in and I’d think, “Yeah, but that was Jesus walking on earth, when people could touch his garment and be healed.”

This morning, while I was getting gas in my car the Lord spoke to me and said,

“Does the Lord’s well run dry, Anne-Marie?”

No. It doesn’t, Lord. Your well is never dry, your hand is never far from those who love you. And we are bringing Reagan in faith, and asking everyone reading this to pray for a 100% healing. The thing about faith, is in order to have it, you have to act upon it. We are going, as an act of faith. And further, this is the same Lord who imparted his power to us as followers of Jesus, who gave humans the power to heal, through the Holy Spirit and our faith in Jesus.

Here’s what I am dreaming of…I’m dreaming of Reagan being healed and saying, “You told me God would help me talk, Mommy and he did!” I’m dreaming of Reagan telling people herself, with her own words, how she was healed.

Every night we pray for Reagan to be able to talk. I ask her, “who well help you talk, baby?” and she points to her heart and says, “God” because she knows that’s where God lives, right inside her sweet little heart. She has that child like faith that God values so much and wants us all to have. What if her faith moves Jesus to heal her in an instant? Fully and completely, not just talking, which is what Rob and I want so much, but everything. There’s so many things that were taken from her…we list the big things, but everything is big when it’s been taken away and given back slowly. Wholeness. We want wholeness.

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There are five of us going on this trip bringing Reagan as an act of faith and hoping for a miracle. I feel like the paralytic man’s friends who heard Jesus was in town and four of his friends carried him, for miles probably, so he could be healed. They get to the house Jesus is at and wouldn’t you know, everyone else in town heard he was there too and it was standing room only, you couldn’t even get to the door. So these friends, tore the roof off and lowered this paralytic man right in the middle, right where Jesus was preaching…laid this man at his feet. Jesus was moved by the faith of this man’s friends and healed him.

“But I want you to know that the Son of Man has authority on earth to forgive sins.” So he said to the man, “I tell you, get up, take your mat and go home.” He got up, took his mat and walked out in full view of them all. This amazed everyone and they praised God, saying, “We have never seen anything like this!” For the full account, read Mark 2:1-12 here.

I want Reagan’s tongue to be untied like this guy…

Then Jesus left the vicinity of Tyre and went through Sidon, down to the Sea of Galilee and into the region of the Decapolis. There some people brought to him a man who was deaf and could hardly talk, and they begged Jesus to place his hand on him.

After he took him aside, away from the crowd, Jesus put his fingers into the man’s ears. Then he spit and touched the man’s tongue. He looked up to heaven and with a deep sigh said to him, “Ephphatha!” (which means “Be opened!”). At this, the man’s ears were opened, his tongue was loosened and he began to speak plainly. – Mark 7:31-35

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I know all of these stories are of Jesus healing, so for those who are uncomfortable with other people’s gifts of healing, there are multiple stories in the Bible of the disciples healing people but there’s one story in particular I want to point you to.

Acts 3

Peter and John healed a man who was lame since birth. He’s begging at the church courts, asking for money. Peter basically says, dude, I’m broke, but I’ll give you what I do have. In the name of Jesus, walk.

Acts 4:22 said that man was over 40 years old. FORTY! Surely his entire body was atrophied and his feet were likely deformed.

Peter helps this man up: “Taking him by the right hand, he helped him up, and instantly the man’s feet and ankles became strong. He jumped to his feet and began to walk. Then he went with them into the temple courts, walking and jumping, and praising God. When all the people saw him walking and praising God, they recognized him as the same man who used to sit begging at the temple gate called Beautiful, and they were filled with wonder and amazement at what had happened to him.”

Don’t you think Jesus passed this man on multiple occasions? Why didn’t Jesus himself heal this man? Because Jesus loves to involve those who follow him in building the kingdom of God, and Jesus also imparted the power and gift of healing to his disciples and followers. It’s faith in Jesus that these miracles occur. It wasn’t Peter’s power the lame man was healed. Just like it’s not this man’s power with a healing ministry who we’re going to, but Jesus’ power in him; and I think it’s very important to mention that this man gives all credit and glory to Jesus alone. It’s through our faith in Jesus that Reagan is able to be healed.

You know who else had a healing ministry? Peter. The rock Jesus built his church on. Plain and simple, this is the power of the Gospel, and I need to remember that when we take Reagan for healing.

As a result, people brought the sick into the streets and laid them on beds and mats so that at least Peter’s shadow might fall on some of them as he passed by. Crowds gathered also from the towns around Jerusalem, bringing their sick and those tormented by impure spirits, and all of them were healed.” – Acts 5:15-16

Please join us in praying for a complete healing and restoration of Reagan this July. Pray that Jesus takes command over the things afflicting Reagan and heals her completely. Our requests are not too much for God and his well is never dry.

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Can I be Honest?

Can I be honest for a moment? Life is hard. Not just our life, I know yours is hard sometimes too.

Let me tell you about this photo.

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It’s perfect.

There’s nothing about this photo I wish were different. Her smile is straight, she’s sitting up nicely, she’s confident, her outfit is on point…it’s just perfect.

What you don’t know is I took 200+ photos in several bursts on my iPhone. A couple turned out good, this one turned out perfect.

Life isn’t perfect though. Sometimes you’ll do something 200 times before you get it right. We as humans mess up countless times in a row, but then something beautiful happens, something comes together. A moment. A good one, and then all the other difficult moments of the day fade away because the good and beautiful moment can carry you farther than all the hard ones.

And hear this clearly: no one’s life is made up of perfect moments. My day is often a series of difficult, imperfect and sometimes gut wrenching moments that require strength that only comes from above in order to get through…and He gives me these moments, these perfect moments from Heaven to tell me that He understands and that He will sustain me to get through. This photo yesterday, that moment with Reagan, will carry me farther than the difficulty of our day to day. It will sail over my worry of the future, because it came from God and when He steps so gently into our chaos, I know…I know I will be OK. You will be OK too.

xoxo