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 spreadsheet details of the dish.
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.
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.