I recently watched this TED talk by one of the leading Dr.’s in GA-1. Sometimes I forget how serious Reagan’s GA-1 is. I forget because I am truly, truly trying to not live in fear. I am doing everything I can all the time to trust God. When a fearful thought comes into my head, I have to squash it. I tell myself: “Live this moment. Enjoy Reagan now, today. You don’t know what tomorrow holds. You’ve been given now…not tomorrow.”
What I know for certain is that this is a serious genetic disorder AND God is miraculously healing and working through Reagan. And God doesn’t have to. Why Reagan?
There were certainly many times we asked after her crisis, “Why Reagan?” in anger. And now we ask in amazement. “Why God, did you choose Reagan to heal in miraculous ways and allow her to have progress but not some of the other GA-1 kids?”
I am beyond thankful and blessed to have Reagan as my daughter. Sometimes, I have days that are so hard and I cry and sulk and get angry and have the complete opposite thoughts. I feel so terribly guilty for having those negative thoughts. Because…I have a lot to be thankful for and to praise God for.
I have a daughter who laughs.
I have a daughter who is trying to walk by herself.
I have a daughter who has figured out how to climb into things and up onto things, who does take food and water by mouth and who is trying to talk with all her might.
No, it is not how I imagined things to be. I imagined a typical child, one who didn’t have to overcome so much. But I read a quote in a blog the other day, that punched me in the gut…the writer said, “Our job as parents isn’t to make photocopy versions of ourselves.” And that is so true.
But if I’m being honest, there were times after we received her newborn screening results and the GA-1 diagnosis that I wanted to pull away, and even more so post crisis. I didn’t want my heart to get crushed again. Each time my heart and soul felt beyond repair. And what I’ve come to realize as the year anniversary of her crisis is on the horizon, is that God is teaching me what it means to love with all your heart. It can really hurt and it is very scary. It can also beat with a love that could burst any fearful thought that comes into my mind. And as I have tears streaming down my face, looking at Reagan sleeping on the monitor and thinking about the days I’ve had lately, I can’t help but feel so loved by God for giving Reagan to us.
I have realized, you have to be broken in order to be fixed properly (and…sshhhh…we’re all broken). God is taking my brokenness and using it to help me be the type of mom and wife I need to be, and in order for that to come through, I need to be refined. God gave us Reagan to draw us, and others, closer to him. Because of Reagan, I feel more alive. I feel like I understand God more…I feel like I understand how the world really works (how God’s economy works). And I feel like our whole family is under God’s wing. The thing that matters most in this life, are the decisions you make for your eternity.
Rob and I know that Reagan will be made fully whole in Heaven, and we pray for her eternal salvation every day. In the meantime we are so grateful to God for working through her to overcome so many things in this life. God is bigger than GA-1. WAY bigger.
“Will evildoers never learn–those who devour my people as men eat bread and who do not call on the Lord? There they are, overwhelmed with dread, for God is present in the company of the righteous. You evildoers frustrate the plans of the poor, but the Lord is their refuge.” -Psalm 14:4-6
“We won’t begin to understand our lives, or what this so-called gospel is that Christianity speaks of, until we understand the Story in which we have found ourselves. For when you were born, you were born into an Epic that has already been under way for quite some time. It is a story of beauty and intimacy and adventure, a Story of danger and loss and heroism and betrayal.” -John Eldridge, Epic
We are at war. To some degree, we are all part of this same war, however, some of us see far more action that others. Anne-Marie and I have seen a lot of enemy fire and we continue to be put on the front lines. Do we want to be here? Do we think we can handle this? No, but this is where we find ourselves. And it is in this war and in these battles that our character and medal is tested. We are squeezed and twisted and bent to the breaking point by the Enemy, but we don’t break. Not because of anything we do or by our strength, but because we find refuge in the Lord.
With all that we are faced with, I feel like we are part of the 101st airborne in Bastogne, encircled by the German Forces in the Battle of the Bulge. We are outnumbered 5 to 1, poorly equipped for the winter weather, low on ammunition, low on food, and without shelter. Just dug into our foxholes and trying desperately to just hold our ground. We are constantly being shelled by artillery and the enemy tries to advance but we are able to poke our heads up briefly enough to drive them back and fend them off. Our position is vital to the enemy’s overall objective, just like Bastogne was for the Germans–but we won’t give up or surrender.
After encircling the city and cutting off the 101st from the rest of the forces and supply lines, the Germans issued a request for surrender, to which Brigadier General Anthony McAuliffe replied with “NUTS!”.
In a sense, he told the German commander to “go to hell” even though they were outnumbered, outmatched, and outgunned. The men of the 101st repelled all of the advances of the German army to take the city over 7-10 days before help arrived and the Allies were able to resupply and retake the lines in Bastogne. And instead of being pulled off the front lines for a break in action, they were ordered to go on the offensive to battle the Germans even further back.
Those troops were real men, and saw more action that their fellow troops. They were revered by their comrades for their bravery and resiliency in such an impossible circumstance. They won when winning wasn’t even an option–all because they didn’t give up and run.
That is the type of man I want to be, that is the type of character I want to have, and that is the type of bravery I want to be known for. God has placed us in this position for His reason, and even though we have been isolated and encircled by the enemy, we will not bend, we will not break, we will not fold and we will not run. So to the commander of the forces that come against me and my family, NUTS!
Click here to read the full account of this story.
“The Lord is King for ever and ever; the nations will perish from his land. You hear, O Lord, the desire of the afflicted; you encourage them and you listen to their cry,”-Psalm 10:16-17
“The cumulative effect of days upon years that we do not really understand is a subtle erosion. We come to doubt our place, we come to question God’s intentions toward us, and we lose track of the most important things in life. We’re not fully convinced that God’s offer to us is life. We have forgotten that the heart is central. And we have no idea that we were born into a world at war.” -John Eldridge, Waking the Dead
I think the greatest tactic the enemy has mastered is to make you believe things are “going just right” for a long time. The longer things seem to go our way, we slowly forget to rely on God and his strength. We forget to seek Him in prayer, we forget to read His words to us, we forget that we have an enemy. Our grip on our lifeline slowly loosens over time, until one day the enemy strikes. The rug is pulled out from under us; the trap door is sprung. And we begin to fall, desperately trying to grab onto anything that can stop our fall, only to find the things we surrounded ourselves with, things we built, begin to crumble when we grab hold. There’s only one line that can save us and stop our fall, but after years of not using it we forget about it. We don’t believe there is any strength in it because the things we built and found strength in for so long are crumbling–so how could this small forgotten rope do anything?
But it can.
It can because it is our safety line from God. It is the only true source of strength and is the only thing that we can grab hold of to stop our fall. But the belief in that truth has been slowly eroded away, just like water can cut through solid granite and glaciers can carve entire mountain ranges–it only needs time. And as time can slowly erode the strongest foundations built by man, time can also build the strongest faith and belief as long as we fully trust in Him–Jesus. The climb might be more difficult, and there may not be any breaks or rest, but it is the only path that will take us to the top. It may not seem safe either, but when you are born into a world at war, no path is safe and the journey isn’t meant to be, but God is good and wants all of us to reach the top where he dwells, for that is the only place of true safety.
Anytime I have to tell Reagan’s story about her genetic disorder and then subsequent crisis to a new person, they inevitably ask, “but she’s better now, right?
Umm…well…in ways she is, yes. But I can’t answer that question with an unequivocal yes, she’s all better. This path is super hard, and I refuse to let everyone who’s following along believe that things are easy, that progress always abounds and that the struggle is not there. The struggle is ALWAYS there. If you see us smiling and laughing, it’s b/c we have pushed through our normal, which is difficult and challenging, and chosen to have a positive outlook for that day, that moment, that appointment, that whatever. But about an inch below that is the struggle of the day in and day out. If you scratch it after a tough car ride, feeding, therapy appt, the flood gates will open, and that’s what happened on Tuesday. Therapy had me in tears and dropping F bombs. [Sorry, Mom].
Tuesday started out awesome. Typically Rob leaves early on Tuesday (while I’m still sleeping) to go to a men’s Bible study, so Tuesday mornings it’s just Reagan and I. But Rob stopped back home to bring me flowers. Flowers in the morning are a lovely, unexpected surprise.
After that, I was headed out to list a property and show some property while my mom watched Reagan. When I came home, I scarfed down lunch and got Reagan ready to go to therapy.
As we waited in the waiting room, I saw my child be a complete two year old. She was biting her stroller when she couldn’t have my iPhone, screaming and arching her back to get out of my lap, refusing to listen, you know, typical two year old stuff. I’m glad she’s doing that b/c that’s normal, but it’s difficult nonetheless. Another mom of a two and a half year old sat in the waiting room. She was shocked as I told her Reagan didn’t walk, or talk…(umm…hello, you’re in a children’s rehab therapy waiting room, nothing should be shocking you). She related that her son didn’t talk either…he was so cute and seemed to be non-verbally willing Reagan into a better mood through his little expressions. His eyes were conveying that everything would be ok. It was adorable…Reagan wanted nothing to do with it.
I briefly explained to this lady why Reagan wasn’t walking at age two and gave the short run down of a metabolic crisis. That can be emotionally difficult, especially when I’m trying to contain my wiggly, sassy, two year old.
The physical therapist comes to get me and I just handed her Reagan. “Here you GO!” … I explained the mood Reagan was in and told her good luck as I followed behind to the PT area.
On Tuesdays Reagan has PT and speech therapy combined. So there are two therapists working with Reagan, plus an intern from UCF that is learning the ropes for her new career. Unfortunately for the intern, she became a fly on the wall and learned what it was like to have a patient who has a bear for a mamma.
Reagan has five total therapists, and she sees them for a combined four hours a week. They are all awesome, unique and wonderful. If they weren’t, we wouldn’t be seeing them. They are truly amazing and excellent at their jobs. But, they all want us to work on about 15 different things, which equals 80 and seems like a million. When I get asked, “have you been working on using the pex lately?” and I say, “no” I feel like a failure.
What’s pex you ask? It’s a method for Reagan to communicate with us. It’s structured communication/play and it’s difficult. Reagan is supposed to tell me what one she wants to play with or identify one of them. Personally, I think it’s a better occupational therapy tool b/c it requires her to rip velcro.
The reason I don’t work on that consistently is b/c I’m trying to do a whole bunch of other things, that are necessary. If it’s not 100% necessary, it’s recategorized and prioritized and if it falls to the bottom, well…that’s just where it ends up.
I want to give you a snapshot of one meal time at our house.
[p.s. the format in this blog is not the best…you’ll have to deal, I’m not perfect].
This is a combined dish, it has mashed potatoes, cheese and peas in it. Anything that’s considered a “combo dish” requires a special spreadsheet that Rob created.
here’s the meal details
Here’s the spreadsheet details of the dish.
Meanwhile, Reagan is waiting for me to get everything together…
I’m cleaning syringes…which is a daily task. We definitely want clean syringes for medicine.
We always weigh her food and put it on our dry/erase board so that we can re-weigh it after and figure out how much she ate.
lunch details
Finally, the lunch table is ready. Mashed potatoes, avocado, a fancy straw that’s part one of an eight straw system to help Reagan with her oral motor skills and to drink properly out of a straw…special spoons that help me depress her tongue when feeding her, and the blue spiky thing, which we’re supposed to put in her mouth to chew to “wake up” her tongue, mouth, cheeks, etc. Sometimes it’s used, sometimes it’s not. This time it wasn’t, but the effort was made in putting it out. Also her medicine. It took me 20 minutes to get lunch ready while she was waiting. If I need to make a combo dish from scratch, I better allot an entire hour before mealtime.
Oh, and I had to give her a med 15 minutes before her food was ready, b/c it’s only effective when given before a meal.
…Almost forgot the feeding bag.
It’s fun when the pump beeps at you while you’re in the middle of trying to feed Reagan food. Not distracting at all.
Could that be anymore annoying of a beeping sound? I think not.
And when you couple that with the amount of effort it takes to get the food ready…the making, the weighing, the ridiculous math calculations that have gone into that spreadsheet that I personally don’t understand…the spreadsheet is hard enough, and then…she doesn’t want to eat!
I can’t say, “Fine…you’ll eat when you’re hungry.” Nope, not an option. You MUST eat, you must meet your lysine goal. Every day, the eating is a battle. It’s always our goal to keep an upbeat and positive attitude about it, but we’re not robots. I just wish so badly that I could make us both lunch, that we could eat the same thing, and sit together and enjoy a meal and feed ourselves independently. That is truly a dream of mine…if you’re able to share a meal, of the same thing with your child, and not worry about the grams of food, please remember what a blessing that is.
You might be wondering where her glasses are.
They’re on the floor.
After her meal, I calculate how much weight of food she ate and plug it into another spreadsheet. This is her menu, it’s comprised of what she ate that day, and we have done this since she started eating food. We’ve always talked about our spreadsheets, but now you get to see them up close and personal. Colorful aren’t they?
SO you have had a glimpse into ONE mealtime, all those videos were taken in a 20 minute span…and we do this four times a day.
Back to Tuesday’s therapy.
When one of the five therapists asks if we are working on one of the 15 things they deem important for their particular discipline, the answer is not always yes. B/c of the above.
We look at Reagan and think, “WOW! She’s come so far and we are so proud!” I mean, she’s eating, drinking from a straw, cruising, says some words, crawls, climbs, bangs things together, etc. However, a therapists harsh reality is that she needs to be doing certain things, and she needs to be doing more of them. And we have homework…lots of it. Off the top of my head in the limited time I have to write, here’s some of the stuff we have to do:
remember to do her mouth exercises
push the spoon down on her tongue and make sure she closes her mouth before the spoon comes out
if you could, for a few minutes a day, also use the blue spikey thing
prompt her for speaking
use sign language consistently, but only these signs for now
when she’s sitting on your lap, make sure her feet are in this position, and her legs are in this position
try to use the exercise ball a few minutes a day to help her core strength
try to make her alternate arms for grabbing toys, block her if you have to (how?)
you can do hand over hand when she’s eating to try and help her use a spoon (how will I measure the floor food?)
also, do hand over hand when playing if it looks like she’s getting frustrated to prevent her from giving up
use the ipad as a reward so that she eats and then gets her educational video as a reward
try to use the walker at least once a week at home (this requires two people)
it’s a good idea if she’s in her braces, try 30 minutes a day (this requires 1.5 people to put them on, keeping them on is another story)
is she holding any crayons? get the fat crayons so she can hold them better
There are so many more things we’re supposed to do, like flashcards and make her identify objects. When do you suppose she will actually have unstructured play? When do you think I’m going to figure out lunch for myself? I also am working full time, from home, while caring for Reagan. I suppose me also being so open and honest about our life has caused some former customers to look elsewhere. It didn’t stop me from still being one of the very top Realtors in the entire Orlando area, but let’s not get into that.
As a friend and business mentor told Rob, “your normal, would crush anyone.”
Yes, it would. And a bad day would completely pulverize you.
I say that from experience…b/c our normal days did crush us for many, many months.
Again, I LOVE, truly love, all of Reagan’s therapists, but at that moment, I could not handle that one question “are you using pex? b/c we need to know if you’re committed to this style of communication.” To be honest…I am not committed to it at this very moment, I am so extremely frustrated you literally, literally have no idea.
If you’re reading and thinking, “if it were me, I’d absolutely do everything possible and be committed to the pex,” then go ahead and judge, and then realize you would never last a day in our life, and also that we’ve tried the pex for months, and it’s frustrating and we gave up a long time ago and they became a toy. We are doing everything possible and we are doing as much as we are able. The pex are not just one more thing. The are attributed to the seemingly one million things, but likely and truly around the 80 total real and tangible therapy things we are being asked to do for Reagan to help her overcome the developmental delays that we are faced with. We are faced with it every. single. day. On top of, normal and difficult two year old tantrums and behaviors.
Therapy is hard, and the reason is seeing how far behind she is from her peers. And it’s hard to watch her struggle and for us all to be pushed to do more. She has a lot of catching up to do and we have to give her those opportunities to catch up. And that. is. hard. I don’t want to discount anyone else’s kids who are struggling in one particular area. But it’s really hard when Reagan is not delayed in just one area, she’s delayed in every single developmental area possible. I try not to compare, but that is impossible. When I see a child one year younger than her, feeding themselves, brushing their teeth, communicating with words, it is very hard for me personally. But I don’t shy away from my friends whose kids are developmentally shining…b/c I need to be their friend, and they want to be my friend.
I really do try to always remain positive, but that is also not possible. If you read Psalms, from one verse to the next, David will rely on God and praise him, and in the very next sentence, ask him where the heck he is! That is life! We are human…except sometimes I feel like I’m being asked to do things that just aren’t humanely possible. And then I get broken, I combust, I cry, I swear, I can’t breathe, I can’t function, and I might be forced to eat a ton of chocolate or open the bottle of wine at 4 p.m. instead of 5 p.m.
Believe me, I trust that God has a plan with my entire being, I trust him that he knows what he’s doing in my life, in Rob’s life, in Reagan’s life. And I am so extremely grateful for all that he has done in Reagan’s life, for the miracles he has performed and will continue to perform. We are blessed, we really are. Maybe this blog doesn’t convey that at all…it’s b/c I’ve had a rough couple of days. But, I do know and trust that Reagan is in our life for a very important reason. And I know that God loves her so much and has a plan so big for her life. I trust all of that. Trust doesn’t equal easy. Believing in God will not make my road smooth. And my love for God and my following of Jesus doesn’t mean that I will never fall, trip, or drop the F bomb in the therapy office. I’m sorry. I am sorry, for saying it, for letting my emotions get the best of me, for unleashing in the most calm but honest way possible.
As I looked at her therapists I said, “there are THREE of you working with Reagan right now, and you’re working with her for 30 minutes and then you’re done. There are only TWO of us, and normally just ONE of us is with her, and we are NEVER done.” It’s 100% overwhelming at times. And it took many, many months of us doing this daily grind just to get used to it. It has taken months of us doing this every day…so now our normal day can be a good day. And a bad day, is one you would never want to encounter.
You know what I’m going to make a priority to work on today with Reagan? Making sure she knows I love her. Even when I’m frustrated, tired, crying, swearing in my head, wondering how I’m going to make it to bedtime…I’m going to still laugh with her, love her, do all that’s required for feeding her and then do it again tomorrow. If I don’t get to the list of homework from therapy, whatever. I’m going to hug Reagan, try to make her laugh and let her throw her toys all over the place.
And I’m also going to let her be adventurous…I’m not going to hold her back. She will do things when she’s ready and I will try very hard to be patient.
“Be exalted, O Lord, in your strength; we will sing and praise your might.” – Psalm 21:13
the very next verse
“My God, my God, why have you forsaken me? Why are you so far from saving me, so far from my cries of anguish? O my God, I cry out by day, but you do not answer, by night, but I find no rest.” – Psalm 22:1-2
“Robert, your ‘normal’ would destroy most others!”
That statement that a colleague emailed me packs so much truth about our lives inside those seven words, and even though we live it every single day, for every single hour, even we can forget it. But that’s what ‘normal’ does, it slowly grinds down the rough edges that remind us of our struggle until we are used to it, until we are dull to its pain. We forget that what we are doing day in and day out in caring and raising Reagan is hard, how it is impossible to do everything for her each day. We have to prioritize what is required for her (meds, formula, food, sleep) with what we need to help her work on (way too much to list in parentheses) along with loving her and having fun and trying to give her the ‘normal’ playtime any other two year old would have.
There isn’t enough time each day to do all the things we are told to do, so sometimes the homework we are given by each therapist (there’s five) doesn’t happen. So when one of them asks their seemingly innocent question of “have you been working on this or that” and we haven’t, we feel like failures. We feel like failures because we have homework to help Reagan simply catch up with her peers, but there isn’t enough time or we don’t have enough energy to do everything. And that can ruin our day faster than anything and it brings us to tears and our knees under this crushing weight.
But here are a few truths we have to remind each other of almost every day: 1-God placed Reagan in our family for a reason, 2-as parents, we are juggernauts, and 3-we are not alone even though we feel completely isolated. And that second truth is important for us to remind each other, because when we feel like we have failed, we need to remind ourselves that we do not have any equals amongst those we know.
[Did he just say that? Oh, that sounds so prideful!]
It’s not prideful, it’s factual. It’s like a high schooler complaining they have no free time to a single mother of five – it’s two completely different playing fields. Truthfully, we don’t want to be on this field or have to be a juggernaut–but we have to be because we have been called to do so.
And we love Reagan and are going to the ends of the earth for her.
3:4
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