Lately, I've been thinking about the peaks and valleys that come with raising children with special needs. Some days it's hard. It feels like I'm constantly treading water, only to look up and find the shore slipping further away. It can feel lonely. Isolating. People inadvertently invalidate strong feelings that come with this parenting journey.
For the past few days I've been trying to keep track of some of the positive things. The things that I'm pretty sure would not be happening if Lauren was a typical 8 year old. The things I love so incredibly much and am so grateful for.
Here they are in no particular order:
1. She is perpetually convinced that her birthday is right around the corner. She recently went an entire day thinking her birthday was coming up (her birthday is February 12th) and nonchalantly asked me what kind of ice cream we were having for her party. I was like, uh...party?
2. She sings Daniel Tiger songs to herself to help work through difficult tasks. If she can't get something right (especially a fine motor task) she sings, "Just keep trying, you'll get be-e-tter!" If she has to use the bathroom she stops and sings, "If you have to go to potty, STOP! And go right away!"
3. She absolutely loves to sing, and she loves to sing loudly. She begs to be allowed to sing "so super loud" which basically means screaming. She thinks she is great at singing. If you follow me in Instagram you know that she is, in fact, not great at singing. I love her confidence.
4. Her confidence! She loves to congratulate herself at doing seemingly simple tasks. "Great job, Lauren!" is a common phrase she says whenever she accomplishes anything, great or small. I'm big on sticker charts to help her learn new tasks or reinforce partially forgotten tasks. We're currently in week 3 of Lauren getting herself completely dressed in the morning and into pajamas at bedtime. She is so excited to put a sticker on her chart! She hasn't missed a sticker and today is day 17.
5. She LOVES people, but on her terms. We went for a family walk yesterday. She said a quick hello to all of our neighbors. One guy (we've never met him before, he's in his mid-late 50's), she said, "I love him. I want to have a sleepovers at his house!" Then she cracked up because she thinks she is hilarious. (Note to self: Work on the concept of stranger danger.)
6. She congratulates others for everything, just like she does for herself. If I use the bathroom, get the mail, brush my teeth, etc she is quick to say, "Great job, Mommy!"
7. She is so forgiving. If someone is unkind to her, short tempered with her, or she perceives any slight at all, she gets mad. But within approximately 10 seconds she says, "It's okay, I forgive you!" And then that's it. No grudge held.
8. She loves me more than I ever thought it was possible for one human to love another. Real talk, sometimes it's irritating as hell. I can't tell you the number of times I've accidentally elbowed her in the head because she's standing so close to me. Or how many times I would just love to go 5 minutes without someone touching me. But her reason is always, "I just love you all the time!" and who can argue with that?
9. She is such a hard worker. Fine motor tasks are HARD for her. So hard. But she always wants to try. She wants me to just start opening her cheese stick, she'll do the rest. She insists on helping peel her oranges. Imagine you had heavy gloves on and then had to perform these tasks. This is what it's like for someone with hypotonia and fine motor delays. It would be so much easier for her to just let me do it, but she insists on trying. She has an unwavering belief in her own abilities and she really sets the best example for how others should respect her ability to try.
10. She loves to help others. She will hand me things (that I don't need) when they're right next to me, just to be helpful. She will get all of our shoes when it's time to go somewhere. She loves to hold the door open for us when it's time to leave. She loves to help make dinner and pack our lunches.
These are just a few of the things that make Lauren so great.
Welcome to my blog!
A blog about our busy family with two amazing kids, one of whom happens to have Down syndrome!
Sunday, April 19, 2020
Saturday, April 11, 2020
Coronacation and health updates
I haven't written in a month and a half. Since that time, a worldwide pandemic has set in and Michigan has had over a thousand people die. Lauren's immunologist compared her to an HIV/AIDS patient, but said we're not to the point of starting prophylactic antibiotics to ward of opportunistic infection "yet". She's in the highest risk category for COVID-19. Yikes. Needless to say, our house is locked down. Greg's laid off, which actually helps because school is cancelled for the rest of the year. I'm still working and planning to continue to do so! I'm thankful to be in a safer work setting and am yet undecided on what I'll do if I get deployed. If I go, I will have to self isolate to prevent bringing the virus home to my family. If I don't go, I'll have to take a personal leave (unpaid) and we'll have no income besides Greg's unemployment. So we're not sure what's going to happen. I'm praying big time for all of my fellow nurses and other healthcare workers on the front lines.
Healthwise...I'm still pretty miserable. In March I had a gastric emptying scan and was diagnosed with gastroparesis. I was not at all surprised. It might explain the weird episodes I have sometimes in the evenings. Tremors, nausea, chills, sense of impending doom, dizziness, tachycardia...could be postprandial hypoglycemia. I'm supposed to see my GI doctor to follow up next week, not sure yet if this will be a video visit or if it will be rescheduled due to COVID-19. My doctor did prescribe a medication (Motegrity) but I took it once and had a headache so bad I almost went to the ER (I'm a nurse, we don't go to the emergency room). I'm not opposed to trying it again, but I don't have the time to be incapacitated for 5 days (apparently the average length of time the headache lasts upon starting this medication) due to work and school. I was supposed to see rheumatology this week to look at possible autoimmune contributors to POTS and gastroparesis, plus a positive ANA titer. But that was cancelled due to the virus and they aren't yet rescheduling. I haven't been getting saline infusions because my infusion center closed down for the time being. I was trying not to go to the hospital for infusions, but I am not feeling well at all and scheduled one for this upcoming Wednesday. I'm hoping it helps. I've been having palpitations a lot lately and it's uncomfortable. I am so fatigued. I'm trying to hydrate enough orally with water, but I'm nauseous every day. I'm getting headaches. I had a 2 day-er this week that felt like a full body migraine, I can't explain it any other way. I'm thinking of seeking help from a naturopathic doctor once the coronavirus pandemic recedes. I just feel like nobody has been able to put together the puzzle of my symptoms and diagnoses and I just feel like there has to be an answer out there. And an answer might bring treatment that works. I've had a ton of bloodwork, EKG, echocardiogram, tilt table test, an MRI of my brain and eyes, an OCT scan (looks at the optic nerves), gastric emptying scan. The abnormalities are my tilt table test (POTS), gastric emptying study (gastroparesis), and OCT scan (severe thinning of my optic nerve that my ophthalmologist attributes to my very poor vision prior to Lasik in 2016). I just feel like something has to be causing all of this. I might be wrong, but I need to know I've exhausted every specialist that might be able to add to my treatment plan and make life more tolerable.
Now for the good stuff. I am thankful for many things! While it obviously sucks that Greg isn't working right now, he's home and we've been spending more time together than ever as a family. I started a sticker chart for Lauren to encourage her to get dressed independently and she has gotten dressed and undressed independently for clothes and pajamas every single time for the last 8 days! Ryan is adapting pretty well to being home and isn't arguing about doing his online school work. Greg's the one overseeing this, plus caring for Lauren, and he's doing a great job. Ryan's been going for bike rides, taking the dog for walks, and is generally being awesome. I'm so proud of him. I've been reading a lot. I'm almost done with school. My family is healthy. We're able to watch church and meet with our small group online.
Most importantly, coffee still exists.
Healthwise...I'm still pretty miserable. In March I had a gastric emptying scan and was diagnosed with gastroparesis. I was not at all surprised. It might explain the weird episodes I have sometimes in the evenings. Tremors, nausea, chills, sense of impending doom, dizziness, tachycardia...could be postprandial hypoglycemia. I'm supposed to see my GI doctor to follow up next week, not sure yet if this will be a video visit or if it will be rescheduled due to COVID-19. My doctor did prescribe a medication (Motegrity) but I took it once and had a headache so bad I almost went to the ER (I'm a nurse, we don't go to the emergency room). I'm not opposed to trying it again, but I don't have the time to be incapacitated for 5 days (apparently the average length of time the headache lasts upon starting this medication) due to work and school. I was supposed to see rheumatology this week to look at possible autoimmune contributors to POTS and gastroparesis, plus a positive ANA titer. But that was cancelled due to the virus and they aren't yet rescheduling. I haven't been getting saline infusions because my infusion center closed down for the time being. I was trying not to go to the hospital for infusions, but I am not feeling well at all and scheduled one for this upcoming Wednesday. I'm hoping it helps. I've been having palpitations a lot lately and it's uncomfortable. I am so fatigued. I'm trying to hydrate enough orally with water, but I'm nauseous every day. I'm getting headaches. I had a 2 day-er this week that felt like a full body migraine, I can't explain it any other way. I'm thinking of seeking help from a naturopathic doctor once the coronavirus pandemic recedes. I just feel like nobody has been able to put together the puzzle of my symptoms and diagnoses and I just feel like there has to be an answer out there. And an answer might bring treatment that works. I've had a ton of bloodwork, EKG, echocardiogram, tilt table test, an MRI of my brain and eyes, an OCT scan (looks at the optic nerves), gastric emptying scan. The abnormalities are my tilt table test (POTS), gastric emptying study (gastroparesis), and OCT scan (severe thinning of my optic nerve that my ophthalmologist attributes to my very poor vision prior to Lasik in 2016). I just feel like something has to be causing all of this. I might be wrong, but I need to know I've exhausted every specialist that might be able to add to my treatment plan and make life more tolerable.
Now for the good stuff. I am thankful for many things! While it obviously sucks that Greg isn't working right now, he's home and we've been spending more time together than ever as a family. I started a sticker chart for Lauren to encourage her to get dressed independently and she has gotten dressed and undressed independently for clothes and pajamas every single time for the last 8 days! Ryan is adapting pretty well to being home and isn't arguing about doing his online school work. Greg's the one overseeing this, plus caring for Lauren, and he's doing a great job. Ryan's been going for bike rides, taking the dog for walks, and is generally being awesome. I'm so proud of him. I've been reading a lot. I'm almost done with school. My family is healthy. We're able to watch church and meet with our small group online.
Most importantly, coffee still exists.
Subscribe to:
Posts (Atom)

