Friendship

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This is what community looks like. Our group of five families said lets have dinner together. Let’s pack our meals, grab a little take out, carry a blanket and set up on this lawn. Let’s talk, even if in broken conversation as we ask our kids to eat, sit still, chew or swallow. Let’s watch our kids trip over adults and sit in someone else’s lap, and hug their little friends. Let’s look in awe and wonder as our kids roar like dinosaurs, take their first steps, interact with each other and try to use their words to talk like we do. Let’s watch them try to be a friend. Let’s show our kids friendship, community and acceptance. Let’s foster love.

That’s easier said than done. It takes time and devotion to make a friend and to have the opportunity to be a friend. Deep and long lasting friendships don’t happen overnight. They happen with time and shouldering next to one another through life.

Some in this group I’ve known for 14 years, some for four. I’ve learned it’s important to welcome new friendships while fostering old ones. Make room for people…your heart is big enough to love many people.

No one should have to do life alone. If you notice someone needing a friend, take it upon yourself to be a friend. Take the time to offer yourself, your heart, your smile, your presence in a conversation. For when you do, a community within your own life can bloom.

To my girlfriends, from your special-needs mom friend

Being a friend to a special-needs mom can be challenging at times. I know because I am a special-needs mom and I’ve discussed this very thing with my girlfriends, who also happen to be the best group of friends anyone could ever ask for.

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My friends were there when my daughter Reagan had a traumatic brain injury and lost all of her skills at 13 months old. They didn’t ask if I wanted them in the hospital, they were there, in the waiting room. They followed us to our room on the Neurology floor and experienced Reagan’s seizures at the same time my husband and I did. They received Dr. results with us and cried in the hallway of the hospital with us when we got our daughter’s MRI results. Appearances didn’t matter, letting us know they were there for us is all that mattered to them.

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While in the hospital, my girlfriends and their husbands made sure we always had a good meal and they visited often. They made us talk about our feelings. They listened. They asked about our marriage to make sure we were doing ok. They asked hard questions and never judged how we handled the situations we were presented with. They walked alongside us.

After coming home, my girlfriends continually called, texted and asked how we were doing with our new normal. They still invited our family to birthday parties and dinners, even though we wanted to withdraw from life. They continued to pursue us when we were at our worst and not the most fun to be around. They sat in the mud and they camped in our valley. They didn’t rush us out of the valley, or tell us to clean up our act; they camped out for over a year in our valley, with us (and sometimes when we make a valley visit, my girls just set up camp). While we all hung out in that valley, they took time to learn how to operate Reagan’s G-tube, so that Rob and I could go out on a date and get reprieve.

Some friends even came to Reagan’s therapy sessions to learn what we were working on. My girlfriends used what happened to our daughter Reagan as an opportunity to teach their own children about special needs. They taught their kids how to pray, they taught their kids compassion and we learned side-by-side what it means to be in the world of special-needs parenting and how to be a friend to a special needs family and their child. IMG_2299

Sometimes I would lash out at my girlfriends and tell them there was no way they could ever understand my life. They quickly recognized my downward spirals on hard days and graciously said they knew that they could not understand…but they so badly wanted to. When I pushed away, they hugged me tighter. They were trying. They forgave me, a lot. They gave me a lot of grace and space to process everything and helped me along through my good and bad days. We had a lot of hard talks about how I needed them to be there for me. And they asked questions about how to best handle delicate situations rather than pretend they didn’t exist. They wanted to share their children’s milestones too, but didn’t know how to without the possibility of hurting me. I told them they can’t protect me from everything, I wanted to be there for them like they were there for me, and be excited for them when their children started walking, even though Reagan wasn’t, yet.

Being a good friend is tough enough, add in a major life crisis and the fight or flight instinct kicks in for everyone. My girls stood with me and fought, and they could write the handbook on how to do it. Together we learned that it’s not about always getting it right or saying the right thing. It’s about being there and being willing to hurt alongside your friend, not just for the moment, for the entire season. When you do that, it’s even more rewarding to watch the growth that happens. If you have a special needs family in your life, you can be there by offering genuine love and care; that’s always the right thing to do. Always.

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.

The Nurse that Changed Everything

When we were in the hospital with Reagan, we had the most amazing nurse, I’m going to call her Kate.

Kate had the most incredible demeanor. She was calm, always smiling and confident, she was the exact opposite of how we were feeling.

After Reagan’s metabolic crisis, Kate helped us set up a conference meeting with everyone working on Reagan’s case including the Dr. on the floor, another Dr. who was basically in charge of the children’s hospital, our genetics Dr., the hospital social worker and the neurologist. The purpose of the meeting was to ask all our questions about our daughter Reagan’s new diagnosis (which was complete basal ganglia damage and loss of all her skills up to 13 months due to a metabolic crisis) and to discuss what we were supposed to do now in caring for her and what we could expect moving forward. We had three pages of questions. Kate is the one who watched Reagan during that tough meeting.

Kate would take Reagan on walks around the hospital floor and rock her to sleep when we went to the Ronald McDonald house.  I’d call Kate first thing in the morning to see how the night went.

One morning, Kate took Reagan to a staff meeting with all the nurses, the Dr. and the resident so she could be with people.  So when Rob and I walked over from the Ronald McDonald house one morning at 6:30 a.m. and couldn’t find Reagan, or any nurses…we walked the floor (slightly panicked). I saw Reagan’s stroller peeking out of the cracked conference room door, the same conference room we were in just a few days ago asking all our questions. While we were grieving over a new diagnosis, Kate was helping us with our hope.

I asked Kate if there was any way we could give Reagan a bath…not with hospital bath wipes, but a real bath. As I wondered logistically how a bath in a hospital bed would work, Kate burst into action and knew exactly what to do, how to keep Reagan warm, how to keep the bed mainly dry…it was amazing. When Kate wasn’t working, I asked another nurse to bathe her…I ended up taking over, Kate just knew how to do it best.

Kate also got us a bigger (private) room with a private bathroom, closer to the nurses station. When you’ve been living at the hospital for about three weeks, this is a HUGE deal.

Not only was Kate the most incredible nurse, we just loved talking with her. We told her all about our dog Bauer at home and how Reagan was probably missing him. She told us that we could bring our dog to the hospital…what a game changer. Kate provided us with the necessary hospital paperwork to get him up the elevators past security, and our neighbor took him to the vet for any shots he was due and to the groomer.  When Reagan laid eyes on Bauer, it was the first she smiled in more than a week.

Bauer and Reagan2

And, it was the first time we saw actual life spring from her body since being admitted for her crisis. She cooed, she made sounds, she smiled, she had a little laugh. She was in Heaven. Bauer stayed for several hours and I truly think he provided a link for Reagan to cling on to. She remembered him, she knew that she had tons of love from us, from our dog; we would do anything for Reagan.

Reagan Smile

Bauer and Reagan1

Our dog and our daughter have a connection. Bauer makes her laugh, he’s soft, he’s furry, he’s friendly and he’s exactly what everyone needed. Because of Kate, our healing was able to begin. We didn’t know it then, but looking back, it’s obvious to see.

Reagan and Bauer

After we were discharged from the hospital, we connected with Kate on FaceBook and she followed along with our journey. We were mentally exhausted and she saw a need. She offered to babysit Reagan out of the blue, so that we could have a break. Wow! A PICU nurse is willing to babysit? The first time she came we asked, “So how often does this happen?” Her response, “How often do you want this to happen?” Not realizing that what we were really asking was how often does a PICU nurse actually come back to babysit a patient? Not often, we all surmised.

That first date night Rob and I pulled out of the driveway and just looked at each other and said, “this is crazy!” We were driving away, leaving Reagan with someone we had only really interacted with at the hospital. But we weren’t leaving Reagan with just anyone…we were leaving her with Kate. The Kate that loved on our daughter, our family and the parade of people who came to visit during our hospital stay. Reagan was with Kate and Reagan would be more than OK, she would be great.

Kate has watched Reagan many times since and Reagan just loves her. Kate is more than comfortable administering medication, using Reagan’s Gtube for her feedings, bathing her (in a real bath tub) and putting her to sleep. She’s even taught us tricks to help her go to sleep.

Rob and I couldn’t figure why Kate would want to do this, for us, for Reagan. We came to the conclusion that she’s just one of the most amazing human beings out there. She told me that she felt a connection to Reagan in the hospital, and that when she saw her reaction to Bauer, she knew Reagan would be OK. We are so thankful to have Kate in our lives and will always be forever grateful to her.

A Reagan Re-cap

We have some new visitors to the blog, FB and Instagram pages so I wanted to give a quick update and overview of why we’re doing these auctions and what GA-1 is and how Reagan has been affected.

Reagan has Glutaric Acidemia Type 1 (GA-1), a rare genetic disorder that was found on her newborn screening. GA-1 requires a strict diet and medication to help keep the amino acids Lysine and Tryptophan at lower levels. Reagan needs lower levels b/c her body does not metabolize these acids quickly and they can build up to harmful levels in her brain, causing seizures, brain damage or even death.

When people who metabolize normally get sick, their body breaks down proteins to fight infection…when people who have GA-1 get sick, their body also breaks down these proteins, unfortunately, the amino acids Lysine and Tryptophan don’t leave the body quickly, they stick around and build up. When Reagan gets sick, the protocol is a different formula recipe for sick days, and up to 8-12 additional fluid oz. a day to help flush things through. If Reagan can’t keep fluids down, we are hospital bound for IVs, Sugars, Glucose, etc. Her body needs something else to break down instead of the proteins she already has, like from her muscles.

The reason we are on our second auction for Reagan is b/c she did get sick, she did have seizures, brain damage and what the GA-1 community calls a metabolic crisis. The first illness Reagan had was RSV, it put us in the hospital for eight days. When we were discharged from the hospital, we were back in two days due to a metabolic crisis. Reagan collapsed and was essentially immobilized in a nanosecond. The scary thing is that even when the protocols are followed perfectly, nothing is 100% certain or preventative. Nothing in life is, really. And while Rob and I are so extremely grateful for the donations, for our friends who have set up these auctions and for all the money that’s been raised for Reagan, it reminds us of why we have to do this. I frequently think back to our hospital visits earlier this year. They were life changing moments.

Birthday buddies
First hospital visit for RSV. Spending my birthday in the hospital. Before her metabolic crisis.
Reagan hooked up to an EEG. There are about 50 wires under her cap
Second hospital visit, April 2014. Before we knew the results of Reagan’s MRI.

In the hospital, two of my closest girlfriends watched Reagan have a seizure. I recently spoke with my friend Laura and she revealed to me how it was the scariest thing she’d ever watched. She watched both Rob and I in fear, watching Reagan…she watched Reagan and feared for her life. We all did. We did not know that April 8th would be a line of demarcation in our lives, pre-crisis and post crisis.

The crisis took Reagan’s ability to crawl, walk, eat, swallow…it took away her muscle tone. We learned that muscle tone is not a strength or work out thing…it’s a neurological thing. Due to Reagan’s entire basal ganglia being damaged by her metabolic crisis, her motor control and muscle tone were lost. Rob and I had ZERO hope when we left the hospital. The neurologist told us Reagan would never smile, walk, talk, eat and that our job was to just “make her comfortable.” It was the most devastating time of our lives. Rob and I will NEVER forget the things we were told, how we felt…there’s even a particular smell that the hospital has and it reminds me of that time. The memories and feelings are forever seared onto us.

Due to Reagan’s brain damage, she also developed a movement disorder called Chorea, which causes involuntary movements, more commonly found in Huntington’s patients. Reagan is on medication for her movement disorder and she has greatly improved.

Reagan has improved in MANY areas. She’s cruising, crawling, standing and eating and drinking a little by mouth. That’s due to prayer, therapy and mediations. We pray A LOT! And we believe that God is doing his thing and being the Great Physician that he is…he’s not bound by earthly knowledge like that neurologist who said Reagan would never do any of these things. He made Reagan and he knows how she works. And God has given us hope to hold on to b/c we have been told over and over by the medical community that Reagan is making incredible strides and that she really shouldn’t be able to do a lot of what she is. The only explanation is G-O-D (are you with me?).

The auctions sprung from our insurance co. denying therapies after they approved them. Through social media, this blog and our friends hounding our insurance co. on Twitter and FB, our file was escalated and they found clear evidence that we were indeed told Reagan was to receive 272 therapies through the end of the year (not just 30…you need a bit more than 30 to recover from a traumatic brain injury).

{Read the insurance blogs here}

We’re quite certain an angel was working the day Reagan’s therapies were approved. But next year, they have let us know we will not have the amount of therapies that were approved this year and that’s why we’re raising money.

So now you’re up to speed on why we are having the auction…it starts TODAY here at 8 p.m. EST.

And unfortunately, Reagan is not feeling well today. She’s got a slight fever and is pretty congested. When she gets sick, it takes me back to the worst times of our life, spending those two weeks in the hospital for her metabolic crisis. The difference with her being sick now vs. then, is now she has a G-tube so we can get all the fluids we need to into her, as long as she keeps them down.

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I make G-tubes look GOOD!

If you could pray for Reagan to feel better, to not have another crisis or seizure we would be extremely grateful. And please check out the auction and bid…it’s for an amazing little girl. Thank you!

Like a Child

I don’t feel like writing…I just want to go get an iced coffee, a pair of sunglasses and pick up a few things at Publix. But today, the prompting to write something has been so strong in my head. Reagan is with Rob at therapy, I was about to walk out the door…I even kissed Bauer and told him to be a good boy, and then looked at my computer and the prompting in my head was even louder, “WRITE!” Sigh…fine.

Let’s see, we are about four months outside of Reagan’s metabolic crisis. I will never forget April 8, 2014. The other day, I was going through my purse and I found the hospital bracelet. We have quite a few of them, but this was the one that had the date of a complete and drastic change. A date can hold so much meaning. A birthday, a wedding, the death of a loved one…and April 8 is one of those days.

My friend recently sent me an email with specific things she felt like God did through our lives that prepared us for this.  But at the end of her email, there were some notes that she’d forgotten to erase as she had written her email that week. And it had a link from a blog post in April and a video of Reagan trying to lift her head, which she could not do.

That video is painful to watch, but it’s also awe inspiring. How far she’s come from that is incredible, and can only be attributed to God’s hand on her. The below video is what Rob captured in therapy today. In four months she went from unable to do much of anything, to walking with a walker for the first time today.

I’ve been holding on to this story and these thoughts and connections for a while and I don’t know why. About a month ago, friends of ours visited us from TN. She told me a story about her daughter throwing up randomly and how a co-worker said she felt like they needed to anoint her with oil b/c they thought it was a spiritual attack. So, they anointed their daughter with oil and the vomit spells stopped.

That story sparked a thought that maybe we should anoint Reagan with oil. So we started to, with the regular ‘ol Pompeian extra virgin olive oil. Nothing fancy, it’s in a plastic bottle. But we started doing it every night. Praying for everything that was lost to be restored. Maybe you think it’s crazy that we put oil on Reagan’s head and pray for her brain to be healed, and on her neck for her throat to be able to swallow food again, and on her arms and wrists so they will gain tone, strength and fine motor skills, and on her stomach for her insides to heal, and on her legs and feet so that they will walk…I don’t really care if you find that manner of prayer crazy, it’s what we do.

One time I was on a walk with Reagan, and I heard a clear voice telling me to “Run and anoint.” Seriously God?! You want me to run home from here? It’s far, I don’t run, I can’t run that far. “I will sustain you.”

So that’s what I did. I checked how far it was after I got home…3/4 of a mile and I didn’t stop (if you know me, you know that’s a miracle in and of itself). I haven’t done that in probably 10 years. But I ran home and anointed Reagan with oil. Was she instantly and miraculously healed that moment? No. But I think it was more about obedience. I just needed to do it. And I feel like that’s why we anoint Reagan, not to mention, it’s Biblical and we pray that God will put healing properties into the oil we put on her.

A friend of mine recently went to Israel. “Oh boy!” I thought, “the motherland!!” I asked him to bring back some oil, and to bring the good stuff, the strong Jesus juice…don’t hold out!  He brought oil back from the region that Jesus performed 75% of his miracles in. I love smelling that on Reagan’s head at night. We put it on her before bed when we pray, and I can smell it on her forehead when we feed her at 10:30 p.m. and I can smell it in the morning when I pick her up and kiss her forehead. It’s a constant reminder that we are covering her in prayer, and that Jesus has a purpose for her life. I don’t understand what it is or why we have to go through these hard times. But something that does provide comfort is that God knew her life would be abundant with us. We would not leave her or forsake her.

God sees each of us much differently than we see ourselves; “Man looks at the outward appearance, but the Lord looks at the heart” (1 Samuel 16:7). Not only does God see deeper, He sees with an expanded spiritual spectrum which we can scarcely imagine. {excerpt from my devotional today}

If God looks at the heart…that means he looked at my heart and Rob’s heart and he knew that there was something in our hearts (that we didn’t even know about) which would allow us to care for Reagan, tell her story and direct the spotlight where God wants it. That’s encouraging…

On June 19th, I asked my friends to tell me how their kids are praying for Reagan. Jesus told his disciples to have faith like a child. And I’ve often thought, “What if our prayers are just not the right kind of prayers? Maybe, we need the prayers of children to heal Reagan.” Children are held in such high regard by God, they are not to be shushed and pushed to the side…they believe, they have faith and they have not been tainted by the pains of this world yet. Here are some of my friend’s kids, and their prayers for Reagan…

Emery (and sometimes Reese – depending on the nap she got that day) pray for Reagan every single night. “Dear Jesus I thank you for baby Reagan. I thank you that you can heal her and take all of her spots away and that her body would feel all better.”
Bardwell prayers
Wyatt–“dear God, help baby Reagan feel better and not get sick anymore” Miles–“aaaamen!”
Colson prayers
“When I say prayers with Everett before bedtime, I ask him if he wants to pray for Reagan. His response is almost always, “Eat.” I say, “You wanna pray that Reagan eats good?” He says “yes.”  I start to pray: “Dear God, we thank you for Reagan…” And Everett says: “Eat.” He’ll keep interrupting me until I pray that Reagan eats good and her feeding tube works right and she gets the nourishment she needs. Then he’ll let me continue with other prayers. It’s important to my boy that your girl eats well, so we’ll keep praying.”
Cody Prayer
Cody: “Dear Jesus…please be wid baby Reagan. Make her bedder. Aaaaaaaaaamen!” (He gets a little excited about the amen!)
Evelyn prayers
Ev prayed tonight that God’s hand would be on Reagan, that she would feel better soon, and that He would “keep her safe and sound for when she is healed.”

I love all these kid’s prayers. And I love Ev’s prayer…for God to keep Reagan safe and sound WHEN she is healed…not IF, but WHEN! I want to pray like her. And I pray that these kids will see God move in HUGE ways for their friend Reagan.

A Lesson in Endurance

I didn’t have a very good day the other day actually, the three weeks leading up to last Wednesday, Thursday and Friday were rough.

  • Wednesday: formula catastrophe at almost midnight
  • Thursday: notification our therapies were being denied by insurance at Reagan’s appointment (vomit)
  • Friday: absolute denial from insurance for any more therapies for Reagan for the remainder of the year (vomit).

Friday was the day that broke both our backs. I was so mad at God, but I needed him to show up more than ever. Bad report after bad report kept coming in and the stress, anxiety and anger had built to a palpable level. I couldn’t even get through writing the Fumble blog b/c complete disaster continued to meet me, whether it be vomit in Reagan’s crib, a call from our Dr. explaining our insurance denial for therapy, Reagan pushing me away while screaming or her bumping her head after falling backwards in her crib b/c she’s not quite strong enough to stand, etc. All the walls caved in on Friday; the little bit of air and life left was sucked out of us. It has taken this weekend for Rob and I to catch our breath…Saturday was hard, Sunday was hard. Reagan didn’t laugh today until 7:45 p.m. and I feel like some days she doesn’t laugh at all. She used to laugh allllll the time.

The endurance Bible verses take on a whole new meaning now. I used to think, “Oh…endurance, what a great quality!” and I’d have a picture in my head of Usain Bolt crossing the finish line in record time holding his arms up to the crowd as if to say: “did everyone see the race I just ran? How awesome am I?!” Umm…no. That’s not what endurance looks like. We are crawling to the finish line of every day. And I know that tomorrow we will wake up and walk and jog and try to keep pace; but by the end of the day, I’m flat on my face, asphalt in my cheeks and under my nails, as I claw my way to the end of the day.

I asked for contributions to the Reagan Fund on Friday and Rob and I both HATE asking for help in that aspect, that’s why I’ve barely mentioned it since it was set up until now. B/c we are self sufficient people, right? I asked God, why are you doing this? Why do we have to humble ourselves to this point? And I heard him say “so that the love of Christ can be shown to you.” It’s so people can carry us when we can not carry ourselves…it’s so that the church could show up for us. It’s so that you all can endure with us.

And the church has shown up in droves.

Friday night I got word that the most amazing little Instagram shop decided to organize an online auction in August to raise money for Reagan and created an Instagram account to hold it. The responses have been overwhelming and Rob and I are blown away. I don’t even know how this auction is going to work, but I know that people are fighting in our corner and they are rooting for Reagan in an unbelievable fashion.

Tonight, we went on our first family bike ride. Reagan wasn’t sure what to do with her arms, so she put them above her head.

Bike Ride1

BikeRide2
Almost at the day’s finish line…trying to finish strong. {Photo Cred goes to Rob…he also attached everything, including my water bottle, rear view mirror and Reagan’s chariot}

We give great honor to those who endure under suffering. For instance, you know about Job, a man of great endurance. You can see how the Lord was kind to him at the end, for the Lord is full of tenderness and mercy. – James 5:10

Praying for God’s tenderness and mercy to come to our family very, very soon.

BikeRide3
Reagan and Magnolia the Bunny

Cheetah Spots

I have the best girlfriends in the entire world. They are always checking in on me, always asking to get together with our kids…always trying to make sure I know that Reagan is loved and included…always, always, always loving my family. And Reagan LOVES to see new people, especially ones that are her size that she can play with.

Reagan, Wyatt and Bauer. Bauer had a secret for Wyatt. #letsplaytelephone
Reagan, Wyatt and Bauer. Bauer had a secret for Wyatt. #letsplaytelephone

Reagan loves Wyatt! And Wyatt is a good sport b/c Reagan is high energy and very grabby. She grabbed at his pants (shhh…don’t tell Rob) and she grabbed his face and his toes and his shirt. There was a lot of “No, Reagan. Nice hands, please!” from me. She’s extremely social and wants to be your best friend, and she will be your best friend, and will pull your shirt to get closer to you, just so you know that you guys are friends.

Then…the most EPIC of all play dates thus far. Reagan, with two dogs and four other small people!

reagan and shyla
Reagan got fancy for her play date. Cody opted for a pants free Friday. #perfectpair #cheetahspots
reagan shyla kyler
This dog Shyla took a lot of ear, tail and paw pulling. My friend Jen said the only thing Shyla wants is attention, which Reagan and little Kyler certainly provided.
EPIC playdate
This is our epic play date. Millie in the car seat, Everett standing watch over everyone, Kyler in the bumbo and Cody hiding his pantless body behind Reagan…Rachel is making sure Reagan stays upright, which she did 🙂

Today was great. Reagan hung out with some pals, went swimming and pulled herself up to sit all by herself in her crib, not only that, she did it FOUR times today. She has figured it out. Immediately after sitting, she tried to stand every single time. (She also hit her head a few times on the way down which is why she has “cheetah spots” on her forehead from all the bumps and bruises). The crib is going back DOWN tomorrow b/c Ray Ray is getting more mobile! I’m so proud of Reagan. She amazes me every day.

Reagan and mommy play date at Jens

These are answers to prayer. Answers to so many prayers that so many people have prayed. KEEP PRAYING!! Never stop b/c God hears and God is healing. Reagan should not be doing any of this. She is being healed by our Heavenly Father, do not forget that.

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.

photo (4)

A Loose Grip

The title of this blog is a complete oxymoron, but there’s good reason.  Let me explain…

In my mind, I feel the need to control every situation for Reagan.  Who am I going to let be around her…who have THOSE people been around…and so on and so forth.  You would call that a tight grip, a short leash, neurotic maybe, if she didn’t have the GA-1 diagnosis and I didn’t have a good reason for it.

But recently a dear friend from college, Denise, asked if she could stay with Rob and I for the weekend.  We’ve always offered our place before, and now…she’s taking us up on it.  Whoa. That’s my first thought.

Denise: Do you mind if I stay with you this weekend while I’m in Orlando?

My internal thoughts: [Um…oh wow, are we ready for that? Who’s Denise been around…how do I answer this nicely? Can I question her past few days of people interaction without sounding like I’m giving an interrogation].

Me: Let me ask Rob.

As I chatted with Rob and told him my fears, he calmly reminds me that we can’t live in fear.  Our Dr.’s remind us that we can’t live in a bubble…I keep asking myself why we can’t do that…even though I’m an extreme extrovert, I can make this sacrifice.  But the thing is, it’s just not possible.  Reagan needs to experience LIFE, like a normal baby, toddler, child, teenager, adult, etc.  God knew what he was doing when He put our family together.

My thoughts continue to wander…every night when I pray for Reagan, I pray that God protects her.  And recently I realized, am I really trusting God if I pray for Him to protect her and yet, I try to keep my grip on every circumstance and scenario that presents itself to us? The reality is that I’m not trusting God to protect her.  Yes, I need to be cautious, but at some point, I have to loosen my grip to try and control EVERYTHING and start trusting God for her safety.  Guess who controls everything? Not me. That’d be God. And I can’t think of anyone else who wants the very best for Reagan than the One who created her.

This impromptu houseguest is something that is helping me 1) realize my fears and also that I’m doubting God and 2) it’s giving me the opportunity to face my fears and trust God.

Isaiah 41:10
So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand.

2 Timothy 1:7
For God has not given us a spirit of fear and timidity, but of power, love, and self-discipline.

In all my decisions surrounding Reagan, it’s a ripple effect in my mind…if I do this, how will that affect her…if I go here, what if this happens? If I bring her to that, what if something unexpected that I didn’t plan for arises? … and on and on and on.

I was reminded recently that even if I try and I think of all possible scenarios, I can’t predict what will happen.

Case and point: My recent mall trip to return one item and exchange another.  I thought, I can bring Reagan, I can do this, and I’ll be fast, 30 minutes in the mall tops. Plus, I can fool her…I’ll put a night time diaper on her, those hold so much pee, she won’t even know if she has a wet diaper.  I’m such a GENIUS! Bonus: Reagan has already pooped like three times today, there is NO WAY she has more in there.  I’ll feed her before I go, but still take some food just in case, and she should be totally fine. I’ve accounted for everything...

Well, the screaming started about 15 minutes in…OK, I’ll hold you for a little bit before we go to the next store.  Now let’s go in your stroller…oh, you want to scream the entire way? Maybe you’re hungry…let’s stop at Starbucks and get hot water to heat up your food.  Ahhh…I figured it out, you were hungry, small delay in my expected 30-minute mall trip, but no big deal.  Now you’re fed, let’s press on.  Did you not get enough food…b/c now you’re screaming in Baby Gap and I’m not quite sure why.  Also, there’s a strange lady trying to touch your arm as if she can soothe you.

My response:

Ok, let’s power walk to the car…and while we’re on our way, let’s tell the mall about the new octave you learned about in your voice!  WOW! I am now on the receiving end of those people who give dirty looks to those parents who have screaming babies…(disclaimer: I am also one of those people, see above)…if I could have given myself a dirty look, I would have.  Instead, I gave everyone else a dirty look to MOVE! GET OUT OF MY WAY!!! I’m trying to get out of here…my baby is fed, she has a night time diaper on, and there is NO WAY she has pooped in that night time diaper, she’s just cranky, OK?!!?!

Whew…finally in the car, luckily my mom was in attendance, and also a witness to the crazy in case you want to pepper her with questions for a good laugh, and she helped to soothe Reagan while in the car.

Back home, I decide to change her…well, what do you know.  POOP! Do you see my problem? I was clinging to MY pre-determined expectations and MY wanting to control the situation and I gave no room for any deviation to MY plans.  Except, I have this one constant variable…my daughter, and I can’t control what she does.

I keep learning this lesson.  God keeps putting me in these situations and I realize, I can’t control everything…or anything really…other than my reaction to what I’m presented with.

So this weekend, my friend Denise stayed with me…and we hung out with Reagan, I even let her hold her. Please don’t be mad if I’ve delayed giving you the joy of holding Ray Ray, just love this precious pic below like I do…

Look at these sleeping beauties! They both just woke up.
Look at these sleeping beauties! They both just woke up.

I love Denise, she always encourages me, challenges me and makes me want to strengthen my walk with the Lord.  We had such a fun time…she joined me to show a property, we cruised around UCF and briefly took in a bar mitzvah (but seriously, we did…Congrats Nick, we’re all sooo proud of you!!)

And before she left, she shared a verse that gave me major perspective and further cemented that I am not in control of anything…

Psalm 115:3
But our God is in heaven;
He does whatever He pleases.

And there you have it…God does what he pleases, and God is good, I’ll keep working to loosen my grip.