an encouraging thought

I love watching movies. It’s a short escape from all your responsibilities where you can turn your mind off for around two hours and just sit, relax, and watch. No thinking required, all you have to do is keep your eyes and ears open and everything just happens in front of you.

Now if you know me, you’d know that I pretty much like most movies. I’m really not that picky, and I’ve got the Netflix account to prove it. (Most movies I’ve watched are rated 3 out of 5 stars) I don’t have any expectations going into a movie, so I’m pretty easily entertained as long as the director can keep some sort of story together, have some decent acting, and maybe throw in a couple fancy special effects. I prefer movies to actually have somewhat of a decent ending, but that seems to be too big of task for Hollywood lately so I’ve caved a little bit on that expectation over the past few years so when a movie does have a good ending, I can be pleasantly surprised.

I’m not opposed to watching a romcom or a suspenseful thriller about the latest possessed house and/or child (seriously, how many of these have been made over the past decade?), but I prefer something a bit more fun. Action, adventure, fantasy, sci-fi, and maybe a touch of drama and comedy…those are the types of films I prefer. Oh, and zombies. Gosh I love zombie films. They can be ridiculous at times, but boy are they fun to watch. (And laugh at. Does that make me weird? Maybe.)

With all that we’ve gone through in these past couple months, everything looks different. We’ve been through some pretty dark and scary times. We know what desolation feels like. And the world just looks different–so do movies.

I recently watched (over the course of about 4-5 days) the second hobbit film. The movie reminded me of an encouraging email my friend Trey had sent to me a couple months ago, which was around the first week we got home from the hospital. He had just read a blog post by Anne-Marie that said, “this was likely God’s plan all along and there’s nothing we could have done to prevent it” and was reminded of a scene from the first Lord of the Rings movie that he thought applied to what we were going through. Here’s the quote:

Frodo:  I wish the Ring had never come to me. I wish none of this had happened.

Gandalf:  So do all who live to see such times, but that is not for them to decide. All we have to decide is what to do with the time that is given to us. There are other forces at work in this world Frodo besides the will of evil. Bilbo was meant to find the Ring, in which case you also were meant to have it. And that is an encouraging thought.

This quote gave me pause and a new perspective to think through over these past couple months. While we certainly wish none of this would have happened to Reagan, we have accepted that this has been God’s plan all along. All the doctor visits, blood draws, diet spreadsheets, careful monitoring, etc—all of it wasn’t going to stop God’s plan. While it gave Reagan a better fighting chance to handle the crisis and resulting brain damage, we couldn’t have prevented it from happening.

That’s been tough to accept, and some days we got lost trying to wrap our heads around it. Thoughts like, “If we had just done this” or “Maybe we shouldn’t have done that” or “Why didn’t we do this”. But we simply can’t think like this anymore because it’s wishing none of this had happened…it isn’t helpful and we end up just beating ourselves up over something that is ultimately out of our control.

Instead, we pray. We pray for healing. Not just in general, but we pray specifically for each area of her body to be healed. We pray for her brain to be healed from the damage that was caused. We pray for her brain to find new pathways and reconnect functions that were lost. We pray for her eyes to center and focus so she can clearly see. We pray for her mouth to regain control to eat, drink, and talk again. We pray for her throat to regain control to swallow both foods and liquids again. We pray for her core to regain control and allow her to sit up unassisted again. We pray for her arms and hands to regain control to allow her to play and do the actions she wants them to do again. We pray for her involuntary movements to completely stop so she can regain her fine motor skills within her arms and hands again. We pray for her legs and feet to regain control and allow her to crawl, stand, walk and jump again. We pray for her stomach to continue to handle food and the feeding tube she has inside her. We pray she will never have another seizure, that she will never have another metabolic crisis, and that she will never have any further damage to her body.

And we believe.

We know God can heal her. Whether it’s overnight or gradually, we believe He will heal her. These are the other forces at work in this world beside the will of evil.

So what are we going to do with the time that has been given to us?

Choose joy continuously. In the midst of pain and struggle, we have to choose joy. No matter how dark and scary it gets, we have to choose joy. No matter how long this season of our life lasts, we have to choose joy.

And believe.

Because the only way we are going to overcome this is with the strength and help of our Lord and Savior Jesus Christ.

And that is an encouraging thought.

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Choosing Joy when it’s Hard

It’s easy to choose joy when you’re in the midst of easy and happy circumstances. But our circumstances, are hard. I feel like we never have time to just enjoy a moment. We move from task to task, appt. to appt.

When Reagan was having her surgery and we were waiting, it was very odd to be sitting alone with Rob without Reagan under our care. She was under the care of nurses, an anesthesiologist, a Dr. and surgical team. A nurse carried her to surgery and Reagan didn’t even look back at us, she was more interested in the stethoscope. That made me kind of sad. When the nurse carried her back after surgery, she was definitely crying…one of those can’t catch your breath cries with lots of tears. And only mommy and daddy could cure those cries.

The hospital is one of those places where everyone is leveled to even ground. Rob said he actually felt some comfort being in the hospital b/c you can see that other people are suffering too. Wealthy and poor alike have kids that are sick needing help. Employed and unemployed go to the hospital, bringing their kids to specialists to help what’s ailing. Addicts and people who are sober all converge into hospital waiting rooms…and we all wait together. The hospital is one of those places where literally all walks of society come together.

I don’t mean to be judgmental and I get that I’m about to be, so here we go. It is suuuuuuuper hard for me to watch children cry and beg for attention from their parents and see those parents glued to their phone without even a hint of acknowledgement to their crying child for 20 minutes. It’s hard for me to watch parents come in with one child wearing no shoes, and another child wearing a sock on one foot and a flip flop on the other and act annoyed that their day is interrupted by being in the hospital. It’s hard for me to watch parents gripe at their kids to “shut up.” How do you even do that when other parents are watching? It’s acceptable for you to belittle your child in front of everyone? #TRYHARDER

–end rant–

Rob said that in order for us to have good days, we have to choose joy daily. And that can be hard, b/c our daily circumstances are incredibly difficult. There have been days when my mind has wandered… “Sigh…I can’t believe I have to feed my 16 month old daughter through a feeding tube. She used to love to eat all sorts of food, but now she can’t. And I really wanted her to be walking by a year, she’s 16 months and can’t crawl, she has leg braces…[deeeeep breath].  I wish she could hold on to her toys better…I wish she was talking more and telling me things. This is so hard, I am so sad…this is depressing…”

As you can see, not choosing joy is a recipe for disaster emotionally, mentally, etc.

Since deciding to choose joy about a week ago, we have both been able to get through the days easier. We are not dwelling on all the things that are wrong, or all the problems and hurdles we have to overcome. We are just doing the day, dealing with what comes our way. Case and point, Reagan’s feeding button thing popped out today. [Medical lesson: her feeding button is held in with a little balloon on the inside of her tummy and it’s filled with 5cc of water. Rob deflated it to find out how much water was in there, b/c filling it up is going to be a regular thing, and Reagan cried and b/c it was deflated it came out. Now you’re schooled]. So formula was literally pouring out of the hole in her stomach (I can’t even believe I’m writing a sentence like that…actually, this whole paragraph makes me shake my head). At the same time, Bauer was throwing up, oh and did I mention we had a guest over (luckily is was my good friend Sami) but even it it wasn’t…this is life people. It’s our life. Previously, that would have ruined my entire day…that 15 minutes of drama and trauma would have me sulking the entire day about how terrible things are. But today we carried on. Rob went to work, Sami and I had breakfast, Reagan went to therapy and rocked it out.

Reagan standing
i’ve got my blue under armour compression onesie, my glasses, my leg braces and my sneakers… #therapyoutfitoftheday

By the way, Reagan wore her glasses for an hour and a half at therapy! Let’s celebrate!

Arms up!
WORK!

So while I don’t get joy in the same way most people do when they watch their kids crawl, walk and try new foods, I know that when I watch my daughter take her first steps, with braces, with a walker, with whatever…I will be so incredibly proud and filled with unimaginable joy. By choosing joy when it’s hard, Reagan will see our pride and excitement and b/c of her determination, it will drive her even more.

Trumpet
apparently playing a pseudo trumpet in feeding therapy will help her to eat…

There are days when this is so painful, but ever since we’ve decided to choose joy, we’ve been able to manage and cope much better and have actually enjoyed many days this past week.

While pain has room in our lives and we give it the space it needs to breathe, it cannot overtake us. We have to make conscious, daily choices to be joyful in the midst of difficult days.

I have to believe that when God says though the sorrow can last for a night, joy comes in the morning. In a literal sense, this sorrow has not lasted one night, this is a long season, that I pray…I PRAY does not last a lifetime. The rest of our life could be this tough season, and the joy could be when we reach Heaven. I also believe that God wants us to have joy here on earth, not just suffering, and if we have to see the joy by choosing it, then so be it. It’s a new way of thinking for us, and it’s hard to acclimate to, but when Rob said we need to choose joy right before going back to get Reagan from surgery, I knew he was right.

This week, Reagan has started sitting up a lot better and for longer stretches. That’s awesome. She flips pages in books, she reaches, she rolls, she laughs, she swings on our swing outside, she goes in the pool, she takes two naps a day, she goes to therapy, and sometimes, she sleeps until 6:30 a.m. All of those things I am thankful and joyful for.

Swing time

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Sitting pretty!

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We can do this…we are doing this. Thank you God for the strength (Philippians 4:13).

The Best Dad

I’ve been waiting to write this post for three weeks. I am the worst at keeping surprises, mainly b/c I want to share in the awesome immediately. So when I had a secret Reagan photo shoot orchestrated for Rob for Father’s Day, I almost spilled the beans b/c I was so excited. Literally one time at breakfast, totally unprompted, I told Rob I couldn’t wait to tell him what I did for him for Father’s Day and wanted to know if he wanted me to just tell him right then.

Well, I’m glad I kept it a secret b/c last night, we had to go to the hospital for Reagan due to a low grade fever. I just thought to myself, “well, Father’s Day is ruined…why does it have to be like this? Especially for Rob.” I’m happy to say all the tests came back normal and we were discharged to go home.

Rob is the best Dad I’ve ever had the privilege of knowing and watching. He’s wanted to be a Dad his entire life…and this is hard. It’s really hard. Even still, Rob continues to take on the challenge, continues to love Reagan, care for her, feed her, help her, even when she’s pushing away, moving involuntarily, not able to hold herself up and an all around difficult child. Rob’s right there. He takes her to multiple therapy appts. a week, he’s at every single Dr. appt. and he completely shoulders parenting with me. Both of us are in the thick of it, up to our necks, together. I recognize that’s not always the case for families. Rob is the type of Father that Hallmark talks about. You could make a mushy Publix commercial about the love Rob has for his daughter and our family. Rob is a man and a father that I celebrate, daily, heck…hourly!

So my big Father’s Day present…well, my lovely friend Ashley of Dearly Photography came over one afternoon a few weeks ago and she got some amazing pictures of Reagan.

After Reagan’s metabolic crisis, I was so worried how she’d do when we took photos. We have so many awesome photos from another great photographer, Kristen Weaver, basically cataloguing Reagan’s first year. We would call her when a new milestone hit, so there were newborn photos, and photos at three months, photos at seven months when she was sitting up and starting to crawl, and the last photo shoot was when Reagan was starting to stand and walk assisted. With all of that lost, how would new photos go? How would they look? How would Reagan look? It’s so hard to get a photo of Reagan, anything that’s posted online has likely had 50 attempts behind it.

When I first received these photos from Ashley, I was breathless.

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She captured Reagan completely.

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One of my prayers has consistently been to love Reagan as God loves her, and for God to help me/us be the parents Reagan needs.

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The thing that surprised me the most, was seeing things in Reagan that I didn’t know were there.

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Not only was her outer beauty captured…but her inner beauty as well.

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These photos allowed me to see more depth to Reagan, if that makes sense. They also helped me to start healing more. Just in these handful of photos, you can see a fun girl, a feisty girl, a tough girl, a loving girl…you see Reagan.

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I am so thankful for the way Ashley was able to capture Reagan…And I’ve been obsessing over these photos for three weeks, looking at them during dark days, after cry sessions and keeping them all to myself to try and make it to this Father’s Day blog post and surprise for Rob.

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Rob, happy Father’s Day. Reagan is so blessed to have you as her Daddy.

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It’s a DATE!

Guys. Guys. GUYS! Rob and I went on a date tonight. Our lovely friends Rachel and Kelsi offered to watch Reagan while Rob and I went to dinner for some alone time and some wine (obviously).

We’ve never left Reagan with anyone since her metabolic crisis, but since Rachel is a NICU nurse at one of the best hospitals in the country and Kelsi used to work in the cath lab at one of the best hospitals, I figure, these girls can handle anything Reagan throws at them. Plus they wanted to give us a break…they wanted some Reagan time and they coordinated how to make it possible. Saying thank you does not seem adequate. But, Thank YOU ladies!!

While Rob and I were doing this…

leaving our neighborhood…out on the open road!

We were getting pictures like this…

Facetune
Rachel, Kelsi and Reagan having a Girls night!

While Rob and I had a glass of wine (or two)…

date night 2
Love this man.

Reagan learned to cook.

We are cooking up some fun over here Mommy and Daddy!!

And just in case anyone was worried, work has carried on as usual.

Babysitting emailing
Reagan’s taking over and returning emails.

We are so blessed to have wonderful friends to give us a little break so that Rob and I can reconnect and take a breather. Reagan was an angel…Rachel and Kelsi said she never cried and was so happy to be playing with them. I mean, I’d be pretty stoked to hang out with them myself…actually, how come when we do hang out we don’t sit on the kitchen counter and bang on pots and pans? I’d like to re-think our girls nights so that we can incorporate this somehow.

To top it off…they even got Reagan to laugh…Bauer is a shoe in for getting laughter, but making Reagan fly over him, they figured out some of our tricks. We love you girls…thank you so much. But seriously…thank you SO MUCH for loving us and our girl.

 

In America…

Today Rob took Reagan to therapy and I was able to get a glorious nap, which helped to make up for my 5 a.m. wake up call. While in the waiting room, he spoke to a little boy’s grandmother about the little boy who was there for therapy.

The grandmother told Rob that he was five and was adopted just a year prior at four years of age. When he was born, he was only one pound. One. Pound. He was not expected to live and spent an entire year in the NICU. His parents did not want him. So after being in the NICU for a year, he was transferred to a state run children’s home. The home wasn’t a facility, but more like a single family home. He was tube fed the entire time he was there, so for four years, he had never had food in his mouth. And the children’s home never let him walk either. So at four…he could not walk, never had food…and the care takers at the children’s home also thought he couldn’t learn anything. Turns out, he just couldn’t see very well…glasses fixed that.

When the parents adopted him he walked within two months. He was running in the waiting room today. He also eats food…started out with baby food and is currently still on purees while they are trying solid foods. He still can’t swallow liquids, so he gets all his liquid through the G-tube. As far as learning…once he had glasses, he could understand more clearly what was going on. Rob said he may have had a breathing tube at one time…he had a little trouble talking, and that was probably one of the therapies he was going to.

The grandmother said, taking care of him is so hard, but worth it. Everyone is amazed at what he is doing. And to think, he was just left in a crib…no one took the time to help him walk, figure out if he needed glasses, or tried to feed him actual food. No one took the time. No one took an interest. No one showed him love. He just laid there, like in a third world orphanage…except it’s in America…and somewhere in Florida. Apparently in America, we don’t want orphanages to be seen, I couldn’t even tell you where the nearest American orphanage is. B/c this is America and if we can just block that reality from our minds, then it’s not happening, right? Not letting a child walk? Not letting them try food? What a travesty.

Blueberries
blueberries baby!

Reagan could have been that baby. Reagan could have been forgotten, unloved and passed over. I think about that all the time. I don’t mention a lot about Reagan’s birth mother, b/c that story is for Reagan to know and it will be her decision what she wants share with others. But her birth mother knew she could not care for Reagan and she made a very  brave choice to place her with a family who she hoped and prayed would care for her and provide her with anything she might need.

June 8th marked two months since Reagan’s crisis and yesterday during her nap she was in a full straddle face down. Rob and I watched the monitor wondering, “what the heck is she doing?” She started moving her arms, and her hands and got them in position to push up and sit…she did it twice. It was HUGE. She sat for a few seconds and then spilled over, but she is re-learning. When she sits, she wobbles, but catches herself when she falls forward, catches herself a little bit when going to the side…and when she falls back on to us, she tries to pull herself back up, and often does so successfully.

She is getting her skills back. And that’s b/c you are praying…we are all praying to Jehova Rapha, which means the Lord who heals you.

…I am the Lord who heals you. – EXODUS 15:26 

 

I’m done talking…

That’s what I said in our Early Steps evaluation today when the mood in the room went from zero to ELEVEN. But let’s go back to the start of our day.

We woke up at 5 a.m. to murderous screams from our daughter. And 45 minutes of soothing didn’t help, so Rob strapped her in the car and started to drive. I slept. He came back with nasty coffee from Chik Fil A and a breakfast chicken sandwich, which are oh so tasty.

Reagan took her morning nap at 9:30 (the time I wish she would wake up)…it lasted an hour. Ok, so we are one nap in at 10:30 and we have an Early Steps evaluation at 1 p.m. today. It’s gonna be a looooong day.

Fast forward to 1 p.m. we are in our evaluation for Early Steps. Please don’t ask me what this government agency does, b/c…well, they are a government agency and the 10 times I’ve asked the same direct question in a variety of ways has never gotten me a straight answer.

Let’s begin.

Our eval started with three early steps folks and our little family. Rob played with Reagan and an evaluator, while I answered questions to another, and someone typed on a computer. It was hard for me to answer questions with “no she doesn’t do that…I don’t know, no…I don’t understand your question…that’s not applicable” It was VERY hard for me to answer these questions and I became irritated with each additional question, so much so that I almost asked, “are you about finished?” but I refrained.

We stepped out of the room for them to score Reagan and when we came back we had the results. She’s doing great socially…she loves people, pays attention to them and smiles, laughs appropriately. This is great, but it’s also sad that our daughter has to be tested for her level of social appropriateness. Unless you’ve had to go through this, you don’t understand. In all other levels (speech, cognition, ability to eat, dress, play, use her hands, etc) she’s severely delayed and her decreased motor function plays a large role in her delays.

When one of the evaluators asked if we had any questions…this is how the conversation went:

AM: Yeah, what exactly are you here to help us with? We are already getting therapies, and everyone has said we need to see Early Steps, how do you fit into our plan to help our daughter? Is she able to get additional therapies through Early Steps? Do you kick in when our insurance either runs out or decides not to renew her extended therapy approvals?

Evaluator 1: Well, we don’t provide therapy. We provide parent education.

[my blood pressure rises to 1,000]

AM: Ok I’ve heard you say {motion air quotes} “PARENT EDUCATION” a whole bunch and I DO NOT need parent education. WE do not need it. WE are educated people, and I’m getting super annoyed that you keep saying “parent education.” What does the person from Early Steps who comes to our house do that’s different? Are you just not allowed to say you provide “therapy” b/c if that’s the case just tell me that the words are interchangeable so that I know you just have to use that term.

Rob: Anne-Marie, calm down.

AM: It’s just making me mad that they won’t use the term therapy, I don’t understand why we are here…our daughter needs therapy, what are they doing that’s different than what we are receiving? I’m done talking. You talk, Rob.

Rob: OooooK

Evaluator 1: Well, someone would come into the home and do things to help Reagan progress and then teach you how to do them when they’re not there.

Evaluator 2: A session with someone from Early Steps may look similar to a therapy session that you currently go to.

Rob: Yes, b/c currently, the therapist works with Reagan and then tells us what we can work on at home.

Apparently that’s parent education.

Evaluator 1 wants to go over goals, meanwhile, Reagan likely feels my ELEVEN status and I take both of our fussy selves to the car while Rob finishes the appointment.

Rob comes to the car with our scores and a booklet of schools and assistance that’s here locally and there I see an ad for Early Steps and their list of services. I think I should cut the ad out and give it to evaluator 1 so that she can understand where she works. In this tiny 1/4 page ad, the service of therapy is used FOUR times, that’s a lot for a place that “only provides parent education and NOT therapy.”

you actually DO provide therapy.
you actually DO provide therapy.

I asked Rob when I started to get all heated in the meeting what level of bitch I was at…he said, “definitely 10…well, I take that back, I would say nine b/c you didn’t swear.” Honesty. I can appreciate honesty.

I told my friend Rachel about my day and I know she’s just shaking her head wanting to bang it against the wall for me. She’s Italian. She gets my level of frustration, and she can go to eleven too. The one thing she did say was that she can more clearly see, now more than ever, that I’m the mom for Reagan. That where Reagan is currently, and what she needs currently…is me and Rob fighting for her. I regularly feel like I’m failing, like I have no strength to muster, and that she’s getting jipped in the mom department. I hope I am what she needs, that WE are what she needs. I do believe God knows what he’s doing, even if I don’t understand it. I wish I could understand more all the things that are at play right now.

This evening I asked Rob when I would just start accepting the circumstances we have. He said the reason we’re both currently not accepting the circumstances we are in is b/c we are trying to get Reagan better and we don’t know where better is yet, that’s why we’re fighting. We will fall, yes. But the goals of wanting Reagan to walk and talk and eat and communicate and to get those things back…for that to happen, we can never be done fighting for her.

Made to be broken

Some days just blow…

Some days are just so hard. Like today…therapy appointments at 10 and 10:30 a.m. Love that they’re back to back, don’t love that they’re in the middle of the morning nap time. And I don’t love that Reagan falls asleep five minutes before we arrive. (Sleep on the way, please!) So, I had a very tired and cranky daughter for speech therapy and physical therapy. I just wonder to myself “is this even worth it?”

Surely she’ll nap on the way home. Nope. We get home around 11:30 a.m., meanwhile I have repeatedly texted Rob about how I am over the day (before noon) and am doing everything I can to not swear in my text messages about how I feel.

At home, it’s on the border of lunch time, but I know that since Reagan woke up at 5:30 a.m. and has only napped for five minutes, I should probably put her down for a nap. I go ahead and do that, while I eat lunch…but when I notice that she’s actually sleeping , I abandon my lunch and try to get some rest.

Napping is not like it used to be, for her or for me. I just tossed and turned and became more irritated about my current life situation. When Reagan woke up, I was just so exhausted…but I fed her, fed myself, tripped over the IV pole and got pissed off. Like seriously, can we get this IV pole out of our lives and can Reagan please eat more than a tablespoon of food and can she please start drinking liquids again? I’m sooooo over this. This is taking forever!!!

Today, I did not want to be the mom. I did not want to be the parent. I did not want to be responsible. I wanted easy. I needed a break. I am positive I’m not the only mom who’s ever said or felt that…but feeling that, saying it and writing it for you to read…makes me feel awful, guilty, ungrateful and unworthy to be a mom. For all the years I wanted to be a mom, and to have children…and now, I’m just mad that this is how God saw fit to make me a mom and I could just cry. I cry over who I’ve lost…how I feel lost and how I feel like a hamster in a wheel that is going nowhere.

The problem with sharing our story and struggle with anyone who wants to read it, is that you can see how hard things are. I guess the positive is you can share in our victories too. If you’re like most people, I bet that it’s hard for you to share in someone’s struggle. That means you have to care…you have to think…you have to put yourself in someone else’s uncomfortable, ugly and tight shoes. And it’s even harder to share those struggles.  I’ve never been one to sugar coat how I feel. When I’m down, you can tell, when I’m hopeful you can tell. I’d say most people float through life bouncing between “I’m happy with my life, I’m uncomfortable with this or I don’t want to deal so I’ll just turn that uncomfortable topic off.” Today I wanted to turn off. I wanted to power down.

Years ago, when Rob and I were in a small group during the thick of our infertility battle, I felt so alone. Not only b/c we were the only ones going through infertility in the group, but I personally felt that others were holding back in sharing their real life, deep down struggles. Was no one else going through any struggles? Just Rob and I? Oh…ok. We’ve felt that we are always going through something difficult, whether it be infertility, family struggles and now the struggles we have with Reagan. Every mountain seemed, and continues to seem HUMONGOUS. As we continued to share with our small group, Rob and I would look at our massive mountain and watch as people would shake their head and say things like, “wow, that seems tough” and then go back to how their life was perfect and how the biggest mountain of a decision is what stroller to select. What a cute little hill you need to climb.

Needless to say, we had to bow out of the small group. Insensitivity can breed terrible things. I became bitter, angry and hostile inside. My current situation is no different. While I try to lean on God and beg to feel his presence, sometimes I guess some days I just can’t see past the mountain. Or maybe I’m supposed to look up the mountain b/c that’s where God is? (The mountain is so tall and so wide, I just can’t see a way around it).

I get that no one wants to put their marriage issues on blast, discuss how their three-year old is misbehaving or how they aren’t getting along with someone. But there is nothing I hate more than people being fake and pretending everything is perfect. Is it b/c I majored in advertising and could successfully write BS that would make you want to consume something that I can see through people’s BS so clearly? I don’t know…but here’s a news flash: Your life is not perfect, stop pretending…it’s irritating the heck out of me, and everyone else. What would life look like if we were more transparent about our struggles? One thing that has been like a breath of fresh air are the people who have started to connect with me…other moms who have children with special needs, who go to therapy appointments…I even connected with a mom who has an adopted boy, also with GA-1.

This struggle has allowed for a little bit of gardening to happen in my life, meaning that I’ve been able to prioritize and separate what’s really important and what’s just fluff. B/c I’ve been open about our struggles, I’ve received emails from others who are going through tough times too and I’ve connected with other GA-1 parents…parents whose children have also had a crisis. And they’ve encouraged me and have given me a little bit of hope in a way only they can, having been there. I’m being pruned…and that can be painful.

Rob and I long for Heaven more than ever. We are made to be broken here on earth, so that we can be made perfect in Heaven. We are made to be broken so we can clearly see we need God to save us and help us through this life. Satan is here to destroy…he thoroughly tried to destroy my day, and he succeeded for a few hours. It’s hard to try and overcome those sad feelings, feelings of brokenness, feelings of “hamster-ness” the feeling of spinning and spinning…and then looking around and saying, “did I really not move anywhere?”

Truth is I am moving, I just don’t know where yet. It’s b/c I’m broken and I don’t understand how the pieces fit. The way the pieces are coming back together don’t make sense. But in the end, the picture will be beautiful…whether it be here, or in Heaven.

You just need the right fuel to get through bad days…

p.s. Rob sent these photos from his outing with Reagan @ Lowes today with these captions to make my day better.