There’s a picture on our fridge of me at age five with my new kitten, Frisky. I look at that photo pretty often, as it’s on the fridge, and I can’t help but think, “My parents were lucky that I was healthy. ALL parents who have healthy kids, that do normal things…they are so lucky, and they don’t even know.”
It’s something that I believe many people take for granted. To have a healthy child is just expected. No one anticipates scheduling for AND going to ten (yes now ten) therapy appointments a week, which is what Rob and I do. After Reagan’s speech evaluation, we added an additional three therapy appointments…we also added another physical therapy, and are working to add another occupational therapy to the mix.
I don’t know of anyone who can understand the exhaustion Rob and I feel on a daily basis. Here’s a glimpse of our day:
- 5 a.m. – Sometimes Reagan wakes up btw. 5 a.m. – 6 a.m.
- 6:30 a.m. – when we actually get Reagan. We give her six medications through her G-tube at this time.
- 6:45 a.m. – get breakfast ready
- 7 a.m. feed her through G-tube and try food by mouth. Also try to have an eye patch on for 30 minutes
- Depending on the day, we go to therapy in the morning
- 7:30-9:30 play or therapy appts
- 9:30/10 a.m. – Nap for 30 minutes
- 11:30 – prep lunch
- 12:00 three medications, lunch in the G-tube and trying food by mouth
- 1-4 play or go to therapy appts
- 3:30 p.m. Nap for 45 minutes (her medications don’t let her sleep very well…many days we’ve had a TOTAL of 45 minute naps btw the two naps, and as much as an hour and half). While Reagan naps, we clean, work, respond to emails/phone calls. (Go to the bathroom, maybe?)
- 4:30 Prep dinner
- 5:00 Feed Reagan Dinner
- 5:30 play/go on a walk
- 6:00 bath
- 6:30 four medications
- 7/7:30 bedtime
- 9:30 p.m. prep medication for morning, make formula for next day, get ready for 10 p.m. feeding
- 10:00 p.m. feed Reagan via G-tube in rocking chair. Rob reads the Bible…this is our favorite part of the day, she’s peacefully sleeping in my arms, Rob is reading the Bible, she’s not having any uncontrollable movements
- 10:45 p.m. we go to bed, Reagan wakes up before our alarm, and we start that all over again
I’m out of breath.
This is every single day. It does not include Dr. appts or other appts, and I couldn’t even tell you what days and times we go to therapy…some days it’s one time, some days it’s three, some are back to back, some are two hours apart. It doesn’t include things that get added in like bringing Bauer in the car this morning at 7:30 a.m. (which completely delighted Reagan) to take him to the groomer on our way to therapy. It doesn’t include going to the grocery store, which I can’t remember when that last was. We normally will do quick trips while Reagan is sleeping in the car and Rob drives the parking lot. And I glare at everyone as if to say, “move out of my way, can’t you see I’m on a mission and I literally have no time in my schedule to stand behind you while you check the egg cartons.”
That schedule doesn’t include when I actually have time to sit down and write…or show property, have closings, list property, etc. Which I continue to do. In fact, I have a lovely 3/2.5 2800+ sq. ft. home that I just listed in the guard gated community of Seminole Woods, priced at $539K! Click here to check it out! Rob and I make our work schedules work too…we just figure it out.
I’d consider the parents who run to Target for fun lucky. I did that today with my mom…BIG outing and everything is quick and with a purpose. We needed tennis shoes for Reagan, I purchased three pairs. Let it also be known, that I loathe tennis shoes and I would rather Reagan wear cute sandals and flip flops, she’s actually been barefoot for all 15 months of her life. We are in Florida people. Anyway, I got her a pair that fits her now, and two pairs that are one size larger, b/c she’s been fitted for leg braces. Yes. Leg braces. And the physical therapist says we’ll need a bigger shoe size so the brace can fit inside the shoe and also give her feet room.
Let’s also talk about medication, shall we? Reagan is on mind altering medication. First of all, if you have seizures, in order to stop them, all seizure medication is mind altering to block certain receptors from doing certain things (bear with me folks, I got my degree in Communications…not science. I went as high as Biology in high school, and took ZERO science in college. I don’t do science…except, for my daughter). Second of all, Reagan has a movement disorder, they believe it to be Chorea. Chorea is the greek word for dance, think “choreography” I guess that’s how they came up with the name for this disorder.
Medications are a dice roll. They may work, they may not. There is one specific medication for Chorea, the side effects are scary. Our neurologist emailed me with these side effects: Somnolence, insomnia, fatigue, irritability, ataxia, movement disorder, appetite decrease are common. // Mood disorder, neuroleptic malignant syndrome and tardive dyskinesia are serious ones. Will also have to check EKG prior to starting it. But let’s be honest, any mind altering drug, from medication for ADHD or anti-depressants all have terrible side effects listed. I only notice it now, b/c I’m giving it to my child.
Don’t feel bad if you have to highlight a term and google it or have your phone define it. That’s what I did this morning when I read it. His email was the first thing I read this morning…I should have started with the Jesus Calling Devotional, not the email. It put me in a foul mood at 6 a.m., combined with the fact that Reagan was already bright eyed and bushy tailed and we needed to get out the door at 7:30 a.m.
There’s a lot of overwhelming things to consider in our care for Reagan. My parents were lucky. I was healthy. Rob was healthy too. When I look at that picture of myself with my cat Frisky on the fridge, and I look at it multiple times a day…again, I think, “Who else is having to consider these factors and make these decisions and weigh the pros/cons of something so serious in their child?” I’d like my most pressing issue to be, what school will she go to. And now I wonder, is school even an option down the road? I can’t think that far ahead, b/c many things can change. There is no sense in worrying about the future…planning seems foolish.
I thank GOD that I have an amazing husband who makes these decisions with me, and who is involved in EVERY facet of every decision. Thank GOD we communicate about every thought that pops into our mind. And thank GOD my mom and Rob’s sister live here locally. Their presence and company and love for Reagan, and for us, makes me feel safe, accepted, loved, encouraged and blessed. And thank GOD for our amazing support group of friends. We have so many wonderful friends who I feel are on this journey with us. I didn’t choose this road, but we do have great travel companions.
As we make it through the new testament, we are now reading Mark…this was the story last night:
17 One of the men in the crowd spoke up and said, “Teacher, I brought my son so you could heal him. He is possessed by an evil spirit that won’t let him talk.18 And whenever this spirit seizes him, it throws him violently to the ground. Then he foams at the mouth and grinds his teeth and becomes rigid. So I asked your disciples to cast out the evil spirit, but they couldn’t do it.”
19 Jesus said to them,“You faithless people! How long must I be with you? How long must I put up with you? Bring the boy to me.”
20 So they brought the boy. But when the evil spirit saw Jesus, it threw the child into a violent convulsion, and he fell to the ground, writhing and foaming at the mouth.
21 “How long has this been happening?” Jesus asked the boy’s father.
He replied, “Since he was a little boy. 22 The spirit often throws him into the fire or into water, trying to kill him. Have mercy on us and help us, if you can.”
23 “What do you mean, ‘If I can’?” Jesus asked. “Anything is possible if a person believes.”
24 The father instantly cried out, “I do believe, but help me overcome my unbelief!”
25 When Jesus saw that the crowd of onlookers was growing, he rebuked the evil spirit. “Listen, you spirit that makes this boy unable to hear and speak,” he said. “I command you to come out of this child and never enter him again!”
26 Then the spirit screamed and threw the boy into another violent convulsion and left him. The boy appeared to be dead. A murmur ran through the crowd as people said, “He’s dead.” 27 But Jesus took him by the hand and helped him to his feet, and he stood up.
28 Afterward, when Jesus was alone in the house with his disciples, they asked him, “Why couldn’t we cast out that evil spirit?”
29 Jesus replied, “This kind can be cast out only by prayer.”
In the car this morning, Rob and I agreed that we both relate to that Father. I imagine he was at his wits end with his son. He’s been like that since a child, and he was probably pulling his hair out…nothing was working, not his prayers, they seemed peppered with doubt. No local Dr.’s. or priests could heal the boy. Anyone who tried to help before had failed. Jesus’ disciples failed and this father probably believed that no one and nothing would ever work. We can relate to that.
I feel like this is our conversation with God, which is likely how it went 2,000 years ago:
Lord! Can you please heal my child?!
“CAN I? Of COURSE I CAN!”
Then please do it! We believe you can! Help our unbelief!!
After I read that email from our Neurologist this morning, I prayed for God to heal Reagan…”God you don’t have any side effects, you can touch her and her body can be made whole. If you were walking this earth, even a graze against your garment would heal her. Your power is immense, it is larger and brighter than any man can comprehend. You have the cure for every ailment in humanity. Every single one. No side effects. Just healing. Please heal Reagan, help us believe.”
We pray every night for healing…for God to just graze Reagan’s crib…his presence alone would heal her. He could touch her head and her brain damage, her genetic disorder, her ability to sit, stand, walk, crawl, talk, eat…they could all function. With one touch. Actually, he could just say the words “be healed, child” and she would be well. Jesus, please…heal our child. Help us overcome any unbelief we have.