Taken

When everything is taken from you and your normal is shattered, it’s impossible to know where to start to put the pieces back together. Especially at the beginning. Once you begin getting the shape of your new normal, a piece falls off. Maybe it wasn’t meant to stick. Maybe the glue that was holding it together was weak. Maybe it was supposed to happen later, or never at all.

So you try to fix it, but then the hassle of making it fit your way is too much. You leave it behind.

And you journey on. Hoping to find a new thing that will help to shape and heal. The goal is always to restore what was lost.

When your world is upside down, you’re exhausted and determined.

Relentless. Unyielding.

This contest for a free week at the Plasticity Brain Center is that relentless pursuit. Everyone I know, and people I don’t who have watched Reagan’s story for five years are voting and sharing and pleading.

And.

I see another mom fighting for her daughter. Every family member, every friend, anyone who has heard of their story is in pursuit of this one thing. Seeing our children plateau is not an option.

The thought of it not coming to fruition is too much to bear. For her. For them. For me. For Reagan. For us. For everyone who is voting. Everyone is taking this on.

You see, the thing is, when something is at your fingertips (and I know this contest isn’t over yet) you can’t bear to have it slip through your fingers. You already experienced that when the traumatic thing happened. Everything slipped away. And you and everyone you know is bound to never let that happen to you. Not this time. Not again.

And that is why, whenever this contest is over, no matter who wins, Rob and I have decided, and it was confirmed through another friend, that everyone should have this opportunity.

Last time we went to the Plasticity Brain Center, we fundraised. Fundraising and asking for monetary help again, well quite frankly it can be exhausting. The truth is, while so many continue on a normal path, as they should, we are still fighting the fight we were given five years ago. We’re working on talking in sentences, riding a tricycle, eating more diverse foods. I’m worrying about Reagan having friends because talking is difficult. And this other mom and family, she has worries she never thought she’d have to face and choices and decisions and medical expenses.

|Side note| The NFL draft and all the inspiring stories of these children who fought adversity and now as adults can talk about their journey to the top, it’s incredible.

Reagan at UCF. #futureknight

That’s what I want.

The other night I cried watching one of those SportsCenter stories, wondering if there would be this amazing overcoming story that Reagan will tell as an adult. Like when she can actually use her words and say, “My Mom and Dad, were relentless in their pursuit of my recovery and because of them and everyone they knew, and even through the generosity of strangers, I can stand here and talk. I can stand here and, you name it.”

Reagan doing Special Olympics Young Athletes

Sunday night, a friend emailed that she and her LuLaRoe consultants would fundraise for the two finalists who don’t win. My goodness, as of this writing, there are 20,000+ total votes. If everyone gave $1, the two remaining finalists could attend this amazing therapy, FOR FREE. She reminded me that generosity never ends and that’s because love never fails. So as we are crawling, there are those who will say, “take my hand, let’s keep going.” And that willingness to hop alongside, to run a race they weren’t given, it blows me away.

When this contest is over, we will share the fundraiser. And perhaps, any additional funds raised over the cost for two people to go, we can start a scholarship at the Plasticity Brain Center for people who desperately need the care, but are unable to afford it.

I’m reminded of the amazing people in my community, people I know and people I don’t. And I’m thankful.

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

It’s just one thing.

Anytime I have to tell Reagan’s story about her genetic disorder and then subsequent crisis to a new person, they inevitably ask, “but she’s better now, right?

Umm…well…in ways she is, yes. But I can’t answer that question with an unequivocal yes, she’s all better. This path is super hard, and I refuse to let everyone who’s following along believe that things are easy, that progress always abounds and that the struggle is not there. The struggle is ALWAYS there. If you see us smiling and laughing, it’s b/c we have pushed through our normal, which is difficult and challenging, and chosen to have a positive outlook for that day, that moment, that appointment, that whatever. But about an inch below that is the struggle of the day in and day out. If you scratch it after a tough car ride, feeding, therapy appt, the flood gates will open, and that’s what happened on Tuesday. Therapy had me in tears and dropping F bombs. [Sorry, Mom].

Tuesday started out awesome. Typically Rob leaves early on Tuesday (while I’m still sleeping) to go to a men’s Bible study, so Tuesday mornings it’s just Reagan and I. But Rob stopped back home to bring me flowers. Flowers in the morning are a lovely, unexpected surprise.

Sunflower

After that, I was headed out to list a property and show some property while my mom watched Reagan. When I came home, I scarfed down lunch and got Reagan ready to go to therapy.

As we waited in the waiting room, I saw my child be a complete two year old. She was biting her stroller when she couldn’t have my iPhone, screaming and arching her back to get out of my lap, refusing to listen, you know, typical two year old stuff. I’m glad she’s doing that b/c that’s normal, but it’s difficult nonetheless. Another mom of a two and a half year old sat in the waiting room. She was shocked as I told her Reagan didn’t walk, or talk…(umm…hello, you’re in a children’s rehab therapy waiting room, nothing should be shocking you). She related that her son didn’t talk either…he was so cute and seemed to be non-verbally willing Reagan into a better mood through his little expressions. His eyes were conveying that everything would be ok. It was adorable…Reagan wanted nothing to do with it.

I briefly explained to this lady why Reagan wasn’t walking at age two and gave the short run down of a metabolic crisis. That can be emotionally difficult, especially when I’m trying to contain my wiggly, sassy, two year old.

The physical therapist comes to get me and I just handed her Reagan. “Here you GO!” … I explained the mood Reagan was in and told her good luck as I followed behind to the PT area.

On Tuesdays Reagan has PT and speech therapy combined. So there are two therapists working with Reagan, plus an intern from UCF that is learning the ropes for her new career. Unfortunately for the intern, she became a fly on the wall and learned what it was like to have a patient who has a bear for a mamma.

Reagan has five total therapists, and she sees them for a combined four hours a week. They are all awesome, unique and wonderful. If they weren’t, we wouldn’t be seeing them. They are truly amazing and excellent at their jobs. But, they all want us to work on about 15 different things, which equals 80 and seems like a million. When I get asked, “have you been working on using the pex lately?” and I say, “no” I feel like a failure.

What’s pex you ask? It’s a method for Reagan to communicate with us. It’s structured communication/play and it’s difficult. Reagan is supposed to tell me what one she wants to play with or identify one of them. Personally, I think it’s a better occupational therapy tool b/c it requires her to rip velcro.

The reason I don’t work on that consistently is b/c I’m trying to do a whole bunch of other things, that are necessary. If it’s not 100% necessary, it’s recategorized and prioritized and if it falls to the bottom, well…that’s just where it ends up.

I want to give you a snapshot of one meal time at our house.

[p.s. the format in this blog is not the best…you’ll have to deal, I’m not perfect].


This is a combined dish, it has mashed potatoes, cheese and peas in it. Anything that’s considered a “combo dish” requires a special spreadsheet that Rob created.

mashed potatoes
here’s the meal details

Here’s the spreadsheet details of the dish.

Finding Lysine in combo dishes - Google SheetsMeanwhile, Reagan is waiting for me to get everything together…

reagan waiting

I’m cleaning syringes…which is a daily task. We definitely want clean syringes for medicine.

syringes

We always weigh her food and put it on our dry/erase board so that we can re-weigh it after and figure out how much she ate.

mashed potatoes weighed

weight on board
lunch details

Finally, the lunch table is ready. Mashed potatoes, avocado, a fancy straw that’s part one of an eight straw system to help Reagan with her oral motor skills and to drink properly out of a straw…special spoons that help me depress her tongue when feeding her, and the blue spiky thing, which we’re supposed to put in her mouth to chew to “wake up” her tongue, mouth, cheeks, etc. Sometimes it’s used, sometimes it’s not. This time it wasn’t, but the effort was made in putting it out. Also her medicine. It took me 20 minutes to get lunch ready while she was waiting. If I need to make a combo dish from scratch, I better allot an entire hour before mealtime.

lunch table

Oh, and I had to give her a med 15 minutes before her food was ready, b/c it’s only effective when given before a meal.

…Almost forgot the feeding bag.

feeding bag

It’s fun when the pump beeps at you while you’re in the middle of trying to feed Reagan food. Not distracting at all.

Could that be anymore annoying of a beeping sound? I think not.

And when you couple that with the amount of effort it takes to get the food ready…the making, the weighing, the ridiculous math calculations that have gone into that spreadsheet that I personally don’t understand…the spreadsheet is hard enough, and then…she doesn’t want to eat!

I can’t say, “Fine…you’ll eat when you’re hungry.” Nope, not an option. You MUST eat, you must meet your lysine goal. Every day, the eating is a battle. It’s always our goal to keep an upbeat and positive attitude about it, but we’re not robots. I just wish so badly that I could make us both lunch, that we could eat the same thing, and sit together and enjoy a meal and feed ourselves independently. That is truly a dream of mine…if you’re able to share a meal, of the same thing with your child, and not worry about the grams of food, please remember what a blessing that is.

You might be wondering where her glasses are.

They’re on the floor.

After her meal, I calculate how much weight of food she ate and plug it into another spreadsheet. This is her menu, it’s comprised of what she ate that day, and we have done this since she started eating food. We’ve always talked about our spreadsheets, but now you get to see them up close and personal. Colorful aren’t they?

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SO you have had a glimpse into ONE mealtime, all those videos were taken in a 20 minute span…and we do this four times a day.

Back to Tuesday’s therapy.

When one of the five therapists asks if we are working on one of the 15 things they deem important for their particular discipline, the answer is not always yes. B/c of the above.

We look at Reagan and think, “WOW! She’s come so far and we are so proud!” I mean, she’s eating, drinking from a straw, cruising, says some words, crawls, climbs, bangs things together, etc. However, a therapists harsh reality is that she needs to be doing certain things, and she needs to be doing more of them. And we have homework…lots of it. Off the top of my head in the limited time I have to write, here’s some of the stuff we have to do:

  • remember to do her mouth exercises
  • push the spoon down on her tongue and make sure she closes her mouth before the spoon comes out
  • if you could, for a few minutes a day, also use the blue spikey thing
  • prompt her for speaking
  • use sign language consistently, but only these signs for now
  • when she’s sitting on your lap, make sure her feet are in this position, and her legs are in this position
  • try to use the exercise ball a few minutes a day to help her core strength
  • try to make her alternate arms for grabbing toys, block her if you have to (how?)
  • you can do hand over hand when she’s eating to try and help her use a spoon (how will I measure the floor food?)
  • also, do hand over hand when playing if it looks like she’s getting frustrated to prevent her from giving up
  • use the ipad as a reward so that she eats and then gets her educational video as a reward
  • try to use the walker at least once a week at home (this requires two people)
  • it’s a good idea if she’s in her braces, try 30 minutes a day (this requires 1.5 people to put them on, keeping them on is another story)
  • is she holding any crayons? get the fat crayons so she can hold them better

There are so many more things we’re supposed to do, like flashcards and make her identify objects. When do you suppose she will actually have unstructured play? When do you think I’m going to figure out lunch for myself? I also am working full time, from home, while caring for Reagan. I suppose me also being so open and honest about our life has caused some former customers to look elsewhere. It didn’t stop me from still being one of the very top Realtors in the entire Orlando area, but let’s not get into that.

As a friend and business mentor told Rob, “your normal, would crush anyone.”

Yes, it would. And a bad day would completely pulverize you.

I say that from experience…b/c our normal days did crush us for many, many months.

Again, I LOVE, truly love, all of Reagan’s therapists, but at that moment, I could not handle that one question “are you using pex? b/c we need to know if you’re committed to this style of communication.” To be honest…I am not committed to it at this very moment, I am so extremely frustrated you literally, literally have no idea.

If you’re reading and thinking, “if it were me, I’d absolutely do everything possible and be committed to the pex,” then go ahead and judge, and then realize you would never last a day in our life, and also that we’ve tried the pex for months, and it’s frustrating and we gave up a long time ago and they became a toy. We are doing everything possible and we are doing as much as we are able. The pex are not just one more thing. The are attributed to the seemingly one million things, but likely and truly around the 80 total real and tangible therapy things we are being asked to do for Reagan to help her overcome the developmental delays that we are faced with. We are faced with it every. single. day. On top of, normal and difficult two year old tantrums and behaviors.

Therapy is hard, and the reason is seeing how far behind she is from her peers. And it’s hard to watch her struggle and for us all to be pushed to do more. She has a lot of catching up to do and we have to give her those opportunities to catch up. And that. is. hard. I don’t want to discount anyone else’s kids who are struggling in one particular area. But it’s really hard when Reagan is not delayed in just one area, she’s delayed in every single developmental area possible. I try not to compare, but that is impossible. When I see a child one year younger than her, feeding themselves, brushing their teeth, communicating with words, it is very hard for me personally. But I don’t shy away from my friends whose kids are developmentally shining…b/c I need to be their friend, and they want to be my friend.

I really do try to always remain positive, but that is also not possible.  If you read Psalms, from one verse to the next, David will rely on God and praise him, and in the very next sentence, ask him where the heck he is! That is life! We are human…except sometimes I feel like I’m being asked to do things that just aren’t humanely possible. And then I get broken, I combust, I cry, I swear, I can’t breathe, I can’t function, and I might be forced to eat a ton of chocolate or open the bottle of wine at 4 p.m. instead of 5 p.m.

Believe me, I trust that God has a plan with my entire being, I trust him that he knows what he’s doing in my life, in Rob’s life, in Reagan’s life. And I am so extremely grateful for all that he has done in Reagan’s life, for the miracles he has performed and will continue to perform. We are blessed, we really are. Maybe this blog doesn’t convey that at all…it’s b/c I’ve had a rough couple of days. But, I do know and trust that Reagan is in our life for a very important reason. And I know that God loves her so much and has a plan so big for her life. I trust all of that. Trust doesn’t equal easy. Believing in God will not make my road smooth. And my love for God and my following of Jesus doesn’t mean that I will never fall, trip, or drop the F bomb in the therapy office. I’m sorry. I am sorry, for saying it, for letting my emotions get the best of me, for unleashing in the most calm but honest way possible.

As I looked at her therapists I said, “there are THREE of you working with Reagan right now, and you’re working with her for 30 minutes and then you’re done. There are only TWO of us, and normally just ONE of us is with her, and we are NEVER done.” It’s 100% overwhelming at times. And it took many, many months of us doing this daily grind just to get used to it. It has taken months of us doing this every day…so now our normal day can be a good day. And a bad day, is one you would never want to encounter.

You know what I’m going to make a priority to work on today with Reagan? Making sure she knows I love her. Even when I’m frustrated, tired, crying, swearing in my head, wondering how I’m going to make it to bedtime…I’m going to still laugh with her, love her, do all that’s required for feeding her and then do it again tomorrow. If I don’t get to the list of homework from therapy, whatever. I’m going to hug Reagan, try to make her laugh and let her throw her toys all over the place.

And I’m also going to let her be adventurous…I’m not going to hold her back. She will do things when she’s ready and I will try very hard to be patient.

Here we are, Juggernauts

“Be exalted, O Lord, in your strength; we will sing and praise your might.” – Psalm 21:13

the very next verse

“My God, my God, why have you forsaken me? Why are you so far from saving me, so far from my cries of anguish? O my God, I cry out by day, but you do not answer, by night, but I find no rest.” – Psalm 22:1-2


“Robert, your ‘normal’ would destroy most others!”

That statement that a colleague emailed me packs so much truth about our lives inside those seven words, and even though we live it every single day, for every single hour, even we can forget it. But that’s what ‘normal’ does, it slowly grinds down the rough edges that remind us of our struggle until we are used to it, until we are dull to its pain. We forget that what we are doing day in and day out in caring and raising Reagan is hard, how it is impossible to do everything for her each day. We have to prioritize what is required for her (meds, formula, food, sleep) with what we need to help her work on (way too much to list in parentheses) along with loving her and having fun and trying to give her the ‘normal’ playtime any other two year old would have.

There isn’t enough time each day to do all the things we are told to do, so sometimes the homework we are given by each therapist (there’s five) doesn’t happen. So when one of them asks their seemingly innocent question of “have you been working on this or that” and we haven’t, we feel like failures. We feel like failures because we have homework to help Reagan simply catch up with her peers, but there isn’t enough time or we don’t have enough energy to do everything. And that can ruin our day faster than anything and it brings us to tears and our knees under this crushing weight.

But here are a few truths we have to remind each other of almost every day: 1-God placed Reagan in our family for a reason, 2-as parents, we are juggernauts, and 3-we are not alone even though we feel completely isolated. And that second truth is important for us to remind each other, because when we feel like we have failed, we need to remind ourselves that we do not have any equals amongst those we know.

[Did he just say that? Oh, that sounds so prideful!]

It’s not prideful, it’s factual. It’s like a high schooler complaining they have no free time to a single mother of five – it’s two completely different playing fields. Truthfully, we don’t want to be on this field or have to be a juggernaut–but we have to be because we have been called to do so.

And we love Reagan and are going to the ends of the earth for her.

Outback

 

3:4

All aboard the therapy train (choo choo)

In case you were wondering while reading my last post why we are gunning for 10 therapy appts. a week…it’s b/c our insurance co. approved 75 therapies PER discipline between now and Sept. 20, 2014!  And I just confirmed with the rehab place that they’ve spoken to our insurance company and that we are good to go. So we are going gangbusters for our daughter. We’ll say yes to any possible time slot (like 7:30 a.m., which is practically impossible if you know us, but we will make it possible).

Thank you guys so much for your prayers for this to come through, they have definitely worked.  I know the next four months will be intense…this is an intense season and we pray that it pays off for Reagan. We also pray that after September 20 our insurance co. continues to approve the needed therapy for Reagan. Hopefully in four months, Reagan will have made a lot of progress. I’m praying for crawling and walking and talking and eating…more of everything.