Parenting Bull

I’m convinced that parenting a toddler is one of the most difficult things in life. Add to that the strong will of a bull (can I get an AMEN from parents who didn’t think they’d be trying to discipline a bull up in here?) I think Reagan believes I’m shaking a red flag in front of her face at all times.

Truth be told though, I was really convicted the other day. Maybe it was being forced to stay inside due to hurricane Matthew blowing outside…but inside we had hurricane force winds from Reagan, and I was NOT having it.

“No we can’t go outside, there’s a hurricane.”

But I’m a bull and due to that, I’m uncompromising in nature. I have an unbending, stubborn personality. And just because there’s danger outside, that doesn’t affect my desire to be out there and my will to get out there.

I swear if Reagan could talk those are the EXACT words she’d be saying.

GOOOOOOO TOOOOOO TIIIIMMMMMEEEEEE OOOOOUUUUUTTTT!!!!!

I feel it’s best to yell that at a toddler so they know you’re serious. And also so they can mimick your own attitude right back at you. Like a mirror.

Sometimes being a parent is the worst.

I needed to have a break and I needed some encouragement. So I went searching for this book that Rob and I actually have several contributions to. I’ve had it for months, but never even opened it because…this.

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Refresh. Spiritual Nourishment for Parents of Children with Special Needs is the book and it’s filled with accounts from parents like us.

In one chapter, a mom is recounting a conversation with her husband, asking about whether God gives us more than we can handle. And her husband wisely answers yes. If we could do life without him, we wouldn’t need to call upon him.

The thing about Jesus, is he doesn’t judge me, or my parenting fails, he gives me grace. He gives me what I need, all I have to do is ask him. I have to chose to not do this alone. When I feel like I can’t do this, the author reminded to put “without you” on the end of that sentence. I can’t do this life Lord, without you.

And then, The Lord gave me this to think on: “If I disciplined you, like you discipline Reagan, how often would you want to run to me? How often would you look to me for help or comfort?”

Major conviction. Because honestly guys, I’m rolling my eyes at the tantrums, I’m yelling back, I’m stressing to meet dietary goals and typical milestones, all the while trying to convince Reagan through sheer parenting force that it’s MY WAY or the highway, girlfriend. Best step in line. I want to control it all and I can’t control any of it. Gosh, if God loved us like that, through force, we’d never stop kicking and screaming. God loves us perfectly, his perfect love is how he draws us in. He is perfect in ALL his ways, yet we still kick, push and scream back at him.

I kick because God, you don’t know what im dealing with here in parenting Reagan. Except he does. I’m watching what it’s like for God to discipline me…while I try to parent Reagan. And this is why, this is why I cannot do this, without him.

My prayer is to love Reagan how God loves her. To see her strong characteristics as assets because we need strong willed people like Reagan in this world, they teach us things others can’t. God didn’t make one mistake in making her, or allowing her crisis. And I want her to know that while frustration may abound at times, that I love her and I value her. I value her thoughts, her ideas and I want to foster an environment for her to be who she was made to be. Fully and completely.

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

Surgery Emotions

Rob and I took Reagan to the ENT today b/c of the multiple ear infections, constant fluid in her ears and two failed hearing tests. After a check today, surprise surprise, she has fluid in her ears. They also asked if Reagan snores and we said yes, so we get a bonus surgery of adenoid removal. And it’s happening tomorrow.

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Rob and Reagan at the children’s hospital earlier this week for her regular blood draws.

I’m a little weepy. I know this is a routine surgery, but things with Reagan are anything but routine. Two years after being in the hospital for her metabolic crisis and brain injury, we’re right back there, almost to the day, having surgery.

On top of that, I’ve received some hurtful messages from people recently. And while these aren’t the exact words being shared with me, the message I’m receiving is clear. I’m not worth spending time or energy on, I’m not worth being celebrated and neither is my daughter, I’m an embarrassment and my life choices aren’t up to par with theirs. It’s really negatively affected me, especially during this time of year when my emotions are literally all over the place. (So a surgery should be the perfect pick me up).

Hearing stuff like that makes me feel really small, unimportant and terrible inside. Rob and I try very hard to be great parents, to be there for our friends and to also make our parents proud…all while trying to have record sales in business and be available to our customers. The demands sometimes seem impossible. While it appears to us that everyone else is moving perfectly along in life, we’re working on the “Mmm” sound and the “Ppaa” sound and the “Daa” sound, we’re scheduling surgery, we’re working on trying to drink more than 6oz of formula by mouth. So to hear that I’m not enough…how can that be true? How can someone have that opinion of me? It hurts.

I just want to hear what Reagan has to say, with words from her mouth. I don’t want to feel like Rob and I are always in a life raft, alone, waiting for someone to rescue us. I want for Reagan to be able to just be a kid and enjoy being a kid, instead of having to work so hard at everything that comes naturally to me and you.

Hopefully this surgery will help her talk more by helping her hear more…if it constantly sounds like she’s under water, it would certainly be tough to mimmic the sounds we’re all requesting right? And if she’s constantly fighting ear infections, then drinking formula would be more difficult and possibly painful, right? This surgery should help in a lot of ways. I really hope it does.
Thank you guys for your prayers. xoxo

**update** surgery is canceled due to Reagan vomiting and having a 102 fever. Pray we get through that quickly!

Relentless

I went to the Dr. the other day b/c I was having chest pain. I know why. I was stressed to the max having to deal with all of Reagan’s super expensive medication that she was close to running out of. Oh the joys of switching insurance co’s (her insurance co. last year, went under). So we’re back with Humana. They are probably thinking, “not these guys again!!”


 

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Hi Humana! We’re baaaaack!!!

I’ll spare you the nitty gritty details, but the reason my heart started feeling like it was being attacked is b/c Reagan’s meds would be denied. After an initial (3 hour call) with the Humana pharmacy and their complete confidence in filling Reagan’s medications, no problem, I decided to proceed with them as our new pharmacy. But after many hours, days and three weeks of follow up, I was days away from being out of medication on multiple meds. The thing Humana forgot to mention is how ridiculously long the process would take and how three medications needed a Dr.’s prior authorization to be dispensed.  So while waiting, three medications were denied coverage, and then expedited appeals and peer reviews were required.

When we finally got to a point where things seemed to be on track, Reagan had one day left of one medication…it couldn’t be re-filled locally b/c CVS was showing that Humana filled it. But Humana couldn’t provide any information on when it would be shipped, I was only told, it’s in process somewhere in their warehouse. I imagined the millions of subscribers Humana might have and thought of that warehouse and wished I was able to go down the street to my local pharmacy. So after paying $25 for that medication days ago, if I needed it tomorrow, it would be $300 at CVS since it was too soon to refill. But alas, hours of phone time later, I had an override code, making that a $10 medication and Reagan not running out. #stressedtotheMAX.

This happened again with another, more expensive ($750) medication. She was almost out, I had paid…but it had not shipped and no one could tell me when it would ship. CVS couldn’t order it b/c the actual cost is $2500 and they needed approval from the CVS manager AND I had to confirm I would pay it. I needed another override code. Luckily the medicine arrived on the last day of medication we had.

So I didn’t really spare you the nitty gritty like I said.

Back to my Dr. appt and my chest pain (which turned out to be stress induced reflux). I told her I knew why it I had it, I was stressed, due to the above and she said, “Having a special needs child is relentless.”

Relentless.

Relentless.

That word has continued to stick with me. She’s right, it is relentless. There’s always a crucial battle to fight. Medications, therapy, formula, feeding supplies, measuring her food, giving her enough calories, but not too much protein. Managing sicknesses to avoid the hospital, juggling multiple dr. appts and blood draws and trying to sprinkle some fun in too. It’s hard.

So imagine, when I think the medication battle is over, and just this week I get a call from her case manager. “Hey Anne-Marie, it’s L the case manager…listen, another one of Reagan’s medications was denied. Try not to panic, we will do the expedited appeal, get authorization and then do another peer review, it can take up to 3 business days.”

[Siiiiiiiggggghhhhhh]

Another medication, down to the wire. Why is it always down the wire? (I’ve been working on this all month). And this medication retails for $16,000/month. And why are these meds so expensive? Can we just praise Jesus we’ve met our deductible in the first month of our insurance plan because of Rob’s cost/analysis spreadsheet genius-ness?

So, I just said “Ok” and sent one email to the Dr. office and left it up to God for the decision to be made in time.

I told God I can’t fight this fight. I have been fighting and crying and my body hurts. I don’t have the energy to fight or worry. I need you to fight for me. And my thoughts lately (from God) have been two words. PRAISE HIM. When trouble comes, praise Him, when it doesn’t make sense, praise Him. When you don’t understand how it will work out, praise Him. So that’s what I did. I hung up and I didn’t think about it again.

An hour and a half later, the medication was approved. Why didn’t I have this posture three weeks ago? I could have saved myself so much anxiety and stress! An hour and a half…I still can’t fathom it. The only thing that had changed from when I started this process to this one final medication was I fully trusted God.

That same day, I had taken my car to the dealer for a routine service. My car has 170,000 miles on it and ZERO warranty, it’s nine years old. I get a call from my service rep, “Hey AM, we need to talk about your car…there’s a repair that’s needed, it’s $2,500.” [GULP]. Again, my posture is to praise God and I ask him to please handle this…somehow.

Rob sends her an email and just asks if she can do any better on the price and we leave it at that. The following morning, we receive this:

Good Morning,

I wanted to give you good news first thing this morning. We contacted Lexus on your behalf. Due to the fact that you are a very loyal customer, Lexus has decided to cover the repair 100%! We are steadily working on it, but I wanted you to start out your morning on the right foot. I’ll let you know how the repair is going later today.

ARE. YOU. KIDDING. ME.

Covered. Paid for. And all I kept thinking was, God is relentless for me. God is continuously pursuing me, covering me and unrelenting in caring for me. And, he never tires in caring for my needs, Reagan’s needs or our family’s needs. What an amazing reminder I was given this week. God is in everything…in getting a medication approved in record time and in paying for my car repair. Relentless.

Here’s the Reality with GA-1

We saw Reagan’s new neurologist a couple weeks ago. We really like him. As he was examining Reagan he asked us what the MRI said since he didn’t have the records yet, and we let him know that the entire basal ganglia was damaged.

He seemed to be disbelieving of that.

“Both sides though?”

“Ummm…Yes? I believe so. It’s pretty substantial damage,” I said.

The Dr. had just finished examining Reagan. He took her on a walk, then picked it up to a light jog and asked her to keep up. He took her up and down some stairs in the PT area, and asked her to point out the nose on a really tiny army man. She did all of that. He had asked her to grab a tape measure and pull, with each hand. I can imagine that the Dr.’s wheels are turning…both sides of her body are working, she’s able to point to something tiny, she’s able to walk, climb stairs and keep up a fast pace…I need to see this MRI.

chasing reagan

Reagan’s genetics Dr. came into the appointment and pulled up the MRI.

“Oh. WOW!” Was the neurologists first response after viewing it. It seems we had conveyed correctly. One thing he said that caught Rob’s attention was the fact that there was no bleeding on the brain.

“I’m sorry, what?!” Rob said. “That’s a possibility?”

Both the Neurologist and genetics Dr. agreed. GA-1 attacks the basal ganglia in a crisis, and there can also be bleeding on the brain. GA-1 can wreak total havoc, as you all know since you saw it do that to Reagan. But a brain bleed can do much more harm than what was done to Reagan.

Over the thanksgiving holiday, a little member of the GA-1 community that I’m a part of passed away. The boy was very close in age to Reagan and without providing the full details, he did pass away due to GA-1. Any number of neurological things could have happened in the crisis that took his life. And in reading that mother’s words, I had to deal with the fact that that scenario is a reality. Even though Reagan has had a crisis and we’ve all witnessed how it took everything away, and watched together as our incredible God continues to heal her and bring everything back, it stopped me in my tracks. I became paralyzed with fear.

It’s the winter time, and flu season, and I’m taking Reagan everywhere. To stores. To the grocery store. To the beach. To preschool. To church. To people’s homes. What if that happened to her? What if we lost her? 

Ever since Reagan’s diagnosis and more so since her crisis, my mind has gone on these wild tangents. Instead of dreaming about her first day of Kindergarten, I wonder what I would do if I had to plan a funeral. It’s terrible to say. It’s also a horrible reality due to GA-1. I have to snap myself out of those moments and cherish the moments I have. I trust God. I really, really do. I’ve had to, and I also want to.

Rob and I do everything we can to keep the hurricane winds of fear away…the winds that try so hard to blow our candle out, and the wind is always blowing. Sometimes we’re good at keeping the wind away, other days it creeps in and blows our flame out and we have to reignite it again. I believe Reagan’s crisis allowed us to just live in the moment, to do more things with Reagan and to trust God more fully. Reagan’s crisis made us realize we are not in control and we can’t control her GA-1. The wind will always blow, which means we require more adjusting and honing and moving closer to God.

This holiday season, I’d ask for you to pray for the family of the little boy with GA-1 who lost his battle. Pray for all the GA-1 families and families living with rare disorders, diseases and disabilities. Pray for those who’ve lost loved ones. This time of year can be tough…but we do have hope in Jesus. We don’t have to live in fear and we can trust in the one who gave his life for us. He conquered all fear and death when he came to this earth and gave it all.

Thank you for being a GREAT doctor.

One of Reagan’s doctors is moving (waaahhhh!!) He’s Reagan’s neurologist, and one of our three favorite doctors; let me tell you why.

You’ve all heard about the things we were told by one of the other neurologists within the practice: “You need to make her comfortable, she won’t do anything, she won’t walk, she may not learn, she probably will only say a few simple words.”

Those are hard things to swallow. But the neurologist who Reagan saw regularly, he believed in her. Our first meeting after getting out of the hospital he told us that he would be aggressive in his recommendations, and it was up to us how aggressive we would want to be. He guided us with each medication he recommended to help control her movements and was honest, especially when he said: “Seizures won’t be your biggest concern, it will be her movement disorder. We need to try and get her movements under control.”

He had a plan to help.

I remember our first appointment right out of the hospital, I came in with a big tabbed binder with a section for each of her new specialists and red, teary eyes. He spent about 45 minutes explaining how the Basal Ganglia worked on a diagram. My head was spinning as he took the time to explain how the medications he was recommending would react in the brain.  He talked about the electricity of the brain, positive and negative charges, how two negatives equal a positive (is that right?). I don’t remember what he said because it barely made any sense to me.  What I gathered though was he was smart, and even though Reagan’s combined conditions were SO RARE, he had experience with metabolic patients and also with patients who had movement disorders.

We were in good hands.

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The diagram Reagan’s neurologist presented us with during our first visit.

He didn’t pretend to know it all, because after all, Reagan was a baby and every medication we’d be trying, wouldn’t be FDA approved for babies, it would be scaled down for her size and weight. When I’d read a disclaimer about a medication, he would calm my fears.

He provided us with a glimmer of hope when we were so, so low, telling us that her brain could rewire itself and find other pathways to do the things the Basal Ganglia was supposed to do. And Reagan’s brain has rewired itself, some other part of her brain is helping her walk, not the Basal Ganglia.

Earlier this year we had an appointment during a string of tough days and he looked me in the eye and said, “You need to be more positive!” It hit me in the gut, but I needed it. He told me to only compare her to herself, not to other peers her age. “You compare her to how she was doing a month ago.” It’s a mantra that has stuck with us.

Reagan’s made such huge improvements since her neurologist came into our life and I’m glad he’s been able to see her have so much progress. Her movements are much more under control, she’s walking, eating and trying to communicate. On Friday we had our our last neurology appointment with him, and he said she looked fantastic and the best he’s ever seen her.

Rob and I always said the neurology appointments were the hardest ones, but he always made them better and they ended up getting easier.

We will miss you Dr. L. You are a fantastic neurologist and our family has been extremely blessed to have Reagan under your care. Best of luck in your newest endeavors.

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Dr. L, Reagan and Mommy.

A Whole New Set of Problems

You know how the Bible says not to worry about tomorrow b/c today has its own problems?

Rob and I woke up early today. Thursdays are early days anyway b/c Reagan has therapy first thing in the morning, and today was also early b/c I had to show property first thing. We headed out the door, kissed each other and started our day on opposite ends of town.

A couple hours later, I received a text from Rob to call him immediately. I was in the middle of showing a home and walked downstairs to give him a call. He proceeded to tell me how he was almost in a terrible car accident. A dump truck traveling in the opposite direction came flying across the median into the oncoming lane. He told me he saw a big plume of what looked to be black smoke/dirt come up from the median. He told me Reagan was sleeping in the back, which I found odd since she normally doesn’t sleep at that time. I am sure that she was sleeping so Rob was totally focused on what was ahead of him.

Ten seconds.

If Rob had been ten seconds earlier, he said he would have been hit. Both he and Reagan could have been killed.

Ten seconds.

If he had carried Reagan to the car from the elevator after therapy, instead of taking the extra time to allow her to hold his hands and walk. If she hadn’t fought him getting into the car seat…if he was speeding or rushing home. I believe those seconds saved both of their lives.

I didn’t wake up today and worry about something like that happening. A car accident like that would have brought a whole new set of problems that I hadn’t even thought about. So then why do I worry about what it will be like when Reagan goes to school. I worry about things I can think up and conjure in my head, but what about the scenarios I don’t think of.

And that’s why God tells us not to worry and to trust him. Today had enough wrapped into it, I don’t need to…no, I can’t think about tomorrow and worry.

When I got home from showing property I came running in and threw my arms around Rob and started crying. “What’s wrong!” he said. “You guys almost died, remember!” Rob and Reagan could have been walking streets of gold today and my world here on earth would have been shattered. We are not promised tomorrow.

Rob drove back to the accident and took these photos. I am so thankful that God kept my little family safe today.

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This is our life. Welcome.

We’ve had some pretty great weekends recently. Of course our life is not Instagram perfect, staged and always lovely, I’ll never pretend for a moment that it is, but we’ve stretched our boundaries, moved our comfort zone further out and have started exploring the world a bit more with Reagan.

Last weekend we went to the splash pad in our neighborhood. Reagan hated it. But it was a HUGE step for us (me especially) just to go. We went super early so no one was there yet. My issue with splash pads is all the kids are running and walking. When I drive out of my neighborhood, I see the parents just hanging out and talking to each other while their kids play with one another and splash about like it’s the best thing ever.

But for us, its’ a struggle. For every photo you see of Reagan standing, there are bunches of these.

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It is very much a struggle to always stand.

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She needs us to help her. She needs to hold on, and there’s nothing to hold onto at the splash pad except for us. With every new experience, I have to constantly fight through how the experience is different, process it as it’s happening, and then be OK with the fact that our experiences look different from the worlds, and from yours in all likelihood. It happens in split second moments, and then it’s re-processed throughout the day. Wow, we did a splash pad. It’s OK…it’s OK. It’s different, it’s real life, it’s OK. We can do it, we DID do it.

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Then, we went to the mall. But it wasn’t just any mall trip.

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We did the kind of mall trip that elicits stares. I have to admit, I WAS THAT PERSON who stared and can I tell you, that being on the receiving end of those stares is W E I R D. A group of young girls, like seven years old and under, walked by and stared at Reagan, and then turned when they passed us to continue staring. I don’t think I would expect much more from young kids…I mean, it’s probably something they’re not used to seeing. It’s up to those in their life to make a teaching opportunity of the situation. Hopefully they did. Not everyone was like that though, some people engaged us, but it was a totally different experience putting her in a walker vs. having her in her stroller. I felt treated differently, I felt those long pity stares at Reagan vs. every other time I’ve gone somewhere with her. In her stroller, all people say is how beautiful she is. This time, it felt like all people could see was her walker and not the awesome beautiful girl inside of it. She is not her walker. I can already see the next stage of struggles brewing…and as she grows, the differences will become more obvious. But you know what?

It’s OK…it’s OK. It’s different, it’s real life, it’s OK. We can do it, we DID do it.

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Going out is tough. I feel like we’re pioneers never knowing what we will encounter. And chances are, people with children who are differently abled might feel the same way. I can probably count on one hand the number of kids I’ve seen out in public, in a walker like Reagan. B/c it’s hard and that’s real life and it’s just easier to stay in, even though it’s equally as tough. Rob pushes me to do these things. He says: “sure, it’s hard. Maybe Reagan will only walk three stores, but maybe in six months she’ll walk the entire length of the mall and back. Just b/c it’s tough on us doesn’t mean we don’t give her those experiences.” [gulp] He’s right.

So we keep doing these things, not knowing if it’s hard b/c she’s two or b/c of all the other stuff.

At brunch the other day I’m pretty sure we were dealing with a typical two year old.

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Get this girl a pair of uneven parallel bars because her form is AMAZING!

I can tell we’re headed into a new season…it’s just starting. Walkers out in public, brunch handstands, special needs parents at the splash pad. This is our life. Welcome.

Comparison is a Thief

It’s been almost TWO months since I wrote something.  To be perfectly honest, between an insanely busy real estate business and taking care of my two year old wonder, I have a list of BravoTV shows on the DVR that I’ve been using all my free time to get through. There’s my Thursday confession for you…I can’t be the only one, right?

Somedays I neglect God (recently, it’s a lot of days). I don’t want to, but it happens. I wake up like I was shot out of a cannon to cries from across the house. SHE’S UP! Get her meds, change her g-tube site, get the formula ready, get her food ready, weigh it, pray she eats it, try to give her formula by mouth, hope she cooperates, where’s the coffee?! I forgot to brush her TEETH!

Today I got up and decided to throw on a hat to cover my day three of no wash hair, and drove up to the local coffee shop to try and write, and hope that God would give me something awesome to whip up onto the ‘ol blog. I gotta say, I’m struggling. I think it has something to do with watching Million Dollar Listing, Shah’s of Sunset or the Real Housewives of (pick a city) and my shoving God aside to see what’s brewing on all my favorite reality shows.

Do you ever struggle with that? (Maybe not the reality show part, but the thing that you shove God aside for?) Do you ever make it to 11 p.m. at night and say, hmmm…I’ll give God my scraps today at the last hour of the 24 he’s given me and hope that tomorrow turns out better.

GUILTY!

This cycle reminds me of what my friend Denise so lovingly coined as “the do-do verses”

“For I have the desire to do what is good, but I cannot carry it out. For I do not do the good I want to do, but the evil I do not want to do—this I keep on doing. Now if I do what I do not want to do, it is no longer I who do it, but it is sin living in me that does it.”  – Romans 7:18-20

There are days when I’m hooking up Reagan’s g-tube to be fed that I am so angry, “I can not believe I have to do this,” and the thoughts of unfairness unfold from there. Then the thoughts of comparison come in. Comparison is a thief that steals and before you know it, it’s robbed you blind.

beach with mommy

At a recent neurology appt. I started asking a bunch of questions with a tone of sadness and wondering. The Dr. looked me in the eye and said: “You need to be more positive. You can’t compare Reagan to anyone, you can only compare what she’s doing today, to what she was doing last month, or last year. As long as she continues to improve, even if it’s slow, that’s all that matters.”

Pffft! That’s easy for him to say…I thought to myself. I AM positive…he doesn’t know what it’s like in the daily grind. But you know what, as hard as it was to hear, he was right. I needed a good slap in the head.

Reagan is doing great. What stinks is how my mood is dependent on what she is or isn’t doing on that particular day. Instead of using God to get me through the day, I’m waiting to see how Reagan directs the itinerary. Oh, she fussed at breakfast…that means the day is ruined b/c Reagan is running the show. Well, she’s only running it if I let her. I have to let God run the show in my life, for it to filter through to how I parent her. And spending time with God filters down to every relationship I have and how I treat those in my life.

Spending time with God needs to happen daily. And it doesn’t always happen (see paragraph 2 above). I can say, well it’s b/c I’m human, b/c I am. But I have to try better.

Evidently today’s blog is a big long confession.

I’m certain there are those of you who relate. I have learned that this life is a struggle…it is for everyone. Everyone is going through something. I just wish we would be more open in sharing it with our fellow man. I wish there was more transparency among those who we do life with. That is the only way we don’t feel alone, that is the only way we can help each other. It’s the way we know that the thoughts we have are shared by others. B/c isolation is a dangerous island and I refuse to live there, no matter how pretty the Devil tries to make it look.

I remain hopeful

“Trust in the Lord and do good; dwell in the land and enjoy safe pasture. Delight yourself in the Lord and he will give you the desires of your heart. Commit your way to the Lord; trust in him and he will do this: He will make your righteousness shine like the dawn, the justice of your cause like the noonday sun. Be still before the Lord and wait patiently for him; Refrain from anger and turn from wrath; do not fret – it leads only to evil. For evil men will be cut off, but those who hope in the Lord will inherit the land.” Psalm 37:3-9

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“They lived happily ever after. These may be the most beautiful and haunting words in the entire library of mankind…this is written on the human heart, this longing for happily ever after.” – John Eldridge, Epic


Today is the year anniversary of the day we came home from the hospital when Reagan had RSV. It is also the year anniversary of one of my most cherished memories. The night before, I told AM to sleep at home. We had been in the hospital for a week and were exhausted. The room we had only had one hospital bed, so I decided I would stay. I would wake up in the morning to mix Reagan’s bottle and hope she would drink something as well as make her some breakfast since she was eating like a champ.

I had woken up before her and started fixing her food in the dark and silence, at least the silence of the hospital. As I was almost finished, I heard her begin to stir. She was waking up. I looked to her crib and saw her lift up her head and look around the room. Her eyes landed on me and with excitement and relief, she let out a word I have only heard that once. “DA-DEEE!”

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As she said that word, she began to crawl to the side of the crib I was on. She was excited to see me. She was relieved I was there with her. And she wanted to be closer. A year has gone by and I have not heard those words again since. And while there is pain in my heart over everything that has been stolen, especially this, I remain hopeful.

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Somedays the tears still come through and I succumb to the loss and grief I’ve suffered, but I still have hope. I hope in a future, that among other things, will include hearing Reagan call out to me “DA-DEEE!” in excitement and joy. I long for moments like this to happen, mostly so I don’t have to live only with the memory and the loss of them. I long for that happily ever after.

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