Comparison is the thief of joy

 Comparison is the thief of joy. I've said this a million times and I believe it in my soul. 99% of the time I am truly not sad that Lauren is not where her typical peers are cognitively, socially, physically, etc. I do tend to compare her to other kids with Down syndrome her age, which is also unfair because every kid has different strengths and weaknesses. Every once in a while I'll see a kid with Down syndrome at work who is a rockstar with speech or gross motor skills or academics and I wonder what else I should be doing with Lauren. (Not that I'll actually do it, but I might think about it 😂)

Yesterday my nephews came over (they're 8 and 6) and Lauren played so nicely with them. They're both super good with her, make sure she can join in with play, and will even play Barbies with her. I ended up giving them all cups and spoons and let them dig in my yard so I could have 10 minutes of silence. 

Then we met my mother-in-law and my younger nephew and niece (3.5 years old and 20 months old) at the park. They are the cutest ever and Lauren had so much fun at the park! My heart broke a little bit though because while I knew Lauren's motor skills were significantly delayed, I didn't quite realize the extend until I saw the direct comparison at the park. Both my nephew and my niece were navigating the playground like champs, exploring everything, climbing on everything. Lauren needs significant help to navigate the playground (and it's an adaptive playground, which I'm so thankful we have in our city!). I was surprised Lauren was still eligible for physical therapy services at school this year until yesterday. 

Part of it is her weight, which we're working on. Part of it is her low muscle tone. Part of it is probably feeling unstable and being afraid she's going to get hurt again (her poor left leg!). We had a really great time yesterday, I don't at all mean to say that it wasn't one of our best days (she listened pretty good while we were there!) because it was. I think this is going to come up more as she gets older and the gap gets wider.

Look at this cutie on the swing!

Permission to admit difficulty

 Lauren had recent cognitive testing done at school. Legally, public school districts must do an evaluation every 3 years to ensure proper services are being rendered. For some parents, hearing the breakdown of data and the numbers can be frustrating and sad.

This time, for me, I found hearing and seeing the data to be empowering and validating. It doesn't make me sad to hear these delays because it's part of our life every day. It's empowering to see the data back up our experiences and the data is validating when the behaviors and abilities we see at home don't match up with her chronological age. 

Lauren's age equivalents for her cognitive assessment were all around the 4 year old range (save for her fine and gross motor skills which are lower). Things like working memory, processing speed, and comprehension all tested right around where one would expect to see a typically developing 4 year old. Her lowest score was fluid reasoning, which is her ability to problem solve through a situation and draw inferences. This part of the evaluation was helpful for me! I am not a super patient person and there have been times recently where I can't help but think along the lines of "WHY don't you understand this?" Seeing the data that supports what we see at home is helpful to me.

We're in a really hard phase right now. It's just plain hard being Lauren's mom sometimes. And I often feel like I can't express this because I fear it coming off as complaining or like I'm somehow saying it's not worth it. Because we chose her and we chose this life and I'd choose her again and again. But, honestly, this is hard. We had an elopement scare last week. She left the (usually locked) backyard and got into Greg's car to play. He didn't see her in the car, so he and Ryan searched the neighborhood and didn't find her. I was out to dinner. I called 911 on my way home. They found her in the garage. She saw Greg and Ryan leave on their bikes to look for her and thought they were going on a bike ride without her. So they found her trying to strap herself into her adaptive bike. Then yesterday she dumped a full bottle of yellow mustard on our white couch and cream carpet. It's difficult to discipline something like that because there aren't any natural consequences. I understand that some people spank, but studies have shown it's not helpful for children with cognitive impairments and I fear her not understanding the why and just thinking I'm hitting her. When asked why she did that, she just repeats, "I don't know". So we took away her tablet for the rest of the day, which I don't even think bothered her much other than it minimally disrupted our normal bedtime routine.

It's hard for me to know how much to share about this parenting journey and my feelings surrounding it. Like all parenting, some days are fantastic and some days are really hard. But in a lot of ways it feels like we have a perpetual toddler and honestly it can be mentally, emotionally, and physically exhausting. The way Greg and I experience life as parents and as people are just different. Different from other parents and, quite honestly, different from each other. We camp (okay, it's glamping) a lot of weekends over the summer and the socializing I'm able to do is vastly different than what other parents of an 8 year old and a 10 year old can do. At 8 and 10, other kids at the campground are super independent and might need some food here or there. Lauren's needs are really more in line with where her skills lie, which is age 4-ish. I often can't sit at the campfire without her because she's lonely, afraid of the dark, or needs supervision. Sometimes she just doesn't want to be social (not surprising to all who know her). I hate to think of life in terms of what we can't do because of Lauren because she is amazing and wonderful and I wouldn't trade her for the world. But the truth is, life is different. 

As she gets older I'm trying to lend myself grace and give permission to admit that this is hard. Full stop. It's also worth it. Full stop. And it's okay for these two ideas to coexist.

Almost September

 It's now nearing September and I'm so excited! This has always been my favorite time of year. I love the fall...school starting, sweaters, colder weather, cider, donuts (though gluten free), apples, pumpkins, leaves, crisp air, Halloween...I could go on and on. 

I'm sad that back to school looks different this year but I'm still equally excited! Our district is allowing some special ed programs to start in person the second week of school (everyone else is virtual through at least all of September), so Lauren gets to go to school for 2 hours every day in the afternoons. She'll have virtual learning in the morning. This will allow her to get her therapies, specialized services, and start easing back into a school routine. The great news is that her best friend is in her class again this year! Ryan is virtual until at least the first week of October and he is really hoping to go back in person. I hope he gets to go back too, it's nice to hear him excited to return to school. He's starting at a new school this year (our district has upper elementary in a different building) and I went there when it was a middle school. He's excited to go to a school my sisters and I went to! I found a babysitter that's going to come in the mornings so I can go to work and she'll help with the online learning portion for Lauren. Then Greg will wake up and hopefully be able to help Ryan navigate anything he hasn't already done. My days off (I'm only working 2 days, so I'll be home 3 days) I'll be managing online school with both kids until it starts in person.

Personally, I love colder weather because my illness hates heat. Give me 65 and cooler every single day and I'm thrilled. I've never minded winter (as long as it snows). I've still been managing to walk a mile 3-4 days a week, which is super great. I'm officially part time at work which means on bad symptom days I can lay down for a quick nap and give my body some rest. And have energy to go for a walk. I can clean my house. I can spend more time with my kids and not be too exhausted to enjoy it. I honestly just feel so much more at peace, I'm glad we decided to make this work, thankful for employers that understand, and so so happy that my husband has been willing to make this work so I can feel better. Lately the gastroparesis symptoms have been worse than the POTS symptoms. I've been having more good days than bad days and have only had to take my GI meds once this past month. I'm still hoping to wake up completely better, but until that happens I'm loving my good days and making it through the bad days.

We went up north this past weekend and my twin sister and her kids joined us for part of it. The kids swam in Torch Lake, we went into Traverse City, had way too many s'mores, and a lot of fun. The last day the four of us ended up finding two beaches with Greg's parents! The first one was super rocky and not great for swimming, but is great for rock collecting and the view was gorgeous. The kids loved it. The second beach was absolutely beautiful and the kids had so much fun swimming. I'm a moron and wore pants and of courses ended up having to go in the water and retrieve/regulate Lauren. Behaviorally, Lauren kind of struggled a lot this weekend and I feel like our lack of a routine is definitely wearing on her. I've started getting her on a better nighttime schedule. We started a new medicine for itching/sleep and (knock on wood) she has been sleeping through the night for like a week now!

How is it almost August?

Time has been moving so slowly and flying by at the same time. August is in just a few days! I feel like this has been an endless summer vacation for the kids since they've been home since mid-March. Tomorrow our district has a school board meeting to discuss returning to school in the fall (or not). We got the okay from Lauren's immunologist to send her, praise God. I'm a little leery with her immune deficiency, but if school starts we need to send her. We stress about the childcare costs every summer and just can't afford to pay it during the school year as well. Ryan is at that weird in-between age of needing and not needing a babysitter. He'll be 11 in December. Lauren most definitely needs a babysitter. Finding a babysitter is a little tricky because Lauren has an, ahem, strong personality. We need someone who can be firm with her, yet still loving and kind. We need someone willing to help an 8 year old with bathroom needs. We are working so hard on independence, but the care she needs is still certainly beyond what a typical 8 year old needs help with.

I'm actually going down to part time at work next month. It's exciting and scary all at once. I've worked full time since Lauren was 3 months old and being a full time working mom and RN is such a huge part of my identity. That being said, I need to put my family first. Ryan is struggling academically and it's not realistic to keep getting home from work at 6:30-7pm four days a week, then make dinner, clean up dinner, supervise bath time for Lauren, and get homework done with Ryan...and get the kids into bed at a reasonable time. And possibly adding school at home during that time? Nope. I'm gone from home 11 hours a day (at least) including commute. I feel like a shitty mom sometimes because I am guilty of using YouTube as a babysitter during the times I am home with my kids just so I can get necessary things done...like straighten anything up, take a shower, make dinner, help one kid with homework, talk to my husband, etc. The good news is that I'm done with school (finally) so at least I am no longer also trying to do homework and manage a 4 credit class every 5 weeks while working, wife-ing, and moming. We are lucky to have a lot of help from family and I know a lot of families don't have that kind of help.

Ryan has been a dream child during quarantine. He's only expected to socialize with people he already knows really well (aka, our family). What socialization he does with friends is online, not face to face. He hasn't been anywhere so he's had zero exposures to trigger a PANDAS flare. I don't think things have ever been this great. He had a tonsillectomy June 22nd and has recovered beautifully. While in the recovery room we noticed a bullseye rash on his leg and we spend lots of time up north (wooded areas), so we treated for Lyme. We're working on getting medication right for his attention and focus. He has a tutor coming weekly. We're hoping 5th grade isn't too much of a shit show, but realistically it's going to be hard. I unfortunately just cannot help him with math. In hindsight, I clearly had a math learning disability. My brain does not do math. Even now at work with medication calculations, I have to get a coworker to help. I have to remind myself that I turned out to be a productive member of society and not worry that I'm failing my son.

Lauren is doing pretty well! We've worked on some useful skills so far during quarantine, like independence and self help. She's regularly getting herself dressed in the morning and in pajamas at night. We're working hard on not arguing about things or whining. I've become much more firm out of necessity, which means once I say no I generally stick to it. This is so hard! Often times, this revolves around Lauren asking for food and to sleep in my bed. We've improved her diet, which has led to a decreased use of Miralax. She hasn't lost weight, but her clothes are fitting noticeably better. She's exercising, either walking (she's up to a mile and a half at a time!) or riding her adaptive bike almost every day. She got some new braces for her ankles/feet that make her feel more stable when she walks. I'm going to order her some more "just right" readers because she's about ready to move up a reading level! It's amazing me to how well she reads. She's currently on Level D, but she's really mastered them (we have a set of 25 fiction and 18 nonfiction). She's sounding out big words in books like The Gruffalo.

My health is meh. I had a month-long period of feeling chronic illness free and it was glorious. Then 90+ degree weather hit and things got worse. It's hard for me to know which treatment strategies are working and which aren't, what's going to trigger an episode of gastroparesis and what's going to trigger my POTS symptoms. Or which disorder is causing symptoms on a particular day. My primary care doctor wants me to see a POTS specialist at Mayo Clinic but my insurance doesn't cover it. And I really don't think it would help. My cardiologist is great. A lot of medications are off the table because my blood pressure is low and my heart rate goes into the 40's while sleeping. It's hard to tell if IV saline works or if it doesn't. It definitely helps when I crash, same as it would help anyone. When my gastroparesis is really bad, the IV fluids certainly help because I can't take in enough oral hydration (or nutrition). The medications for gastroparesis have some pretty scary side effects, so I'm hesitant. I'm really hopeful that going down to part time at work will allow me to be more kind to my body.

We're facing the same dilemma as working parents all over the country...what the h-e-double hockey sticks are we going to do if schools don't open? Neither Greg or I have jobs that allow us to work from home. Good thing these two are extremely cute.

Quarantine life

Day 712 of quarantine...

Okay, but doesn't it kind of feel like it? It's May 8th. It snowed today, albeit briefly. WTF. I guess I can't complain too much because last weekend was almost 80! I'm hoping to get in some walking/bike riding this weekend still. Last night I went for a walk with Ryan and Lauren. Lauren walked for about 5 houses, then sat in her adaptive stroller. I was so glad Ryan decided to come! He has been the happiest guy during all of this. It makes me so incredibly happy!

Lauren is still my little velcro baby and we must be practically touching at all times when occupying the same space. I honestly feel like it's torture for her to be home all day when I'm at work. When she's at school, I think it's fine and she doesn't think about it. And really, she's doing great at home for Greg! But the minute I get home from work she acts like we've been separated for days on end. It's adorable and obviously a pretty good ego boost for me. I'm pretty sure her she has a greater capacity for love that anyone else in the world. I got home from work today and we made dinner together. Then we played Barbies. Now I'm relaxing and she's sitting next to me watching Disney stuff on YouTube while I repeatedly remind her to use her chewy instead of biting her fingers. Greg and Ryan are watching Star Wars stuff at deafening decibels. I'm wearing noise cancelling headphones to try and stave off a migraine I feel coming on. Usually my first symptom is noise sensitivity, so I'm wearing Lauren's lime green noise cancelling headphones. It's a good look for me. I have migraine meds I can use, but I prefer to wait until I know I need them, like if it gets so bad that I can't sleep.

Luckily every Friday is Lauren's "Mommy Sleepovers" day, so I'll get to go to bed at 8:30pm guilt free. It also means that I'll be mauled by an 80lb Gumby for approximately 10 hours. She likes us to be hugging while we sleep 😆 I better enjoy going to bed early because my (hopefully) last class starts tomorrow and I'll be burning the midnight oil to make sure I get everything done. God willing, I'll be done June 13th and officially graduate August 15th!

All of my favorite things

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.

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.

One day at a time

Some life updates...

The kids are both doing pretty well. Lauren had surgery in December on her airway (lingual tonsils) and while she was sedated GI did an EGD with biopsies. Recovery was 10 days of absolute hell that I thought would never end. But it did! And praise God, she is now sleeping through the night 90% of the time!!! I had eye surgery (cosmetic) right before Christmas and couldn't see for over a week. Ryan broke his arm a couple days before Christmas and is following with orthopedic surgery to make sure he heals well because the fracture was on a growth plate. Ryan is basically amazing (I think we've had one case of strep with accompanying PANDAS flare since November). And Greg is a champ and still working midnights 6-7 days a week. We are trying out a new church and have joined a small group. Ryan LOVES it and while they don't have special needs programming, Lauren seems to enjoy it and they keep her safe and happy. I think it helps both kids that they're in the same classroom and we have family working there as well, so there are familiar faces. I've enjoyed a wonderful break from school, but start up again next week. God willing, I should graduate in June! Lauren's behavior has been pretty good! She certainly has her days where I wonder where I've gone wrong as a parent but overall she's doing well. We're working on some issues like taking things from classmates, but I think it's getting better.

POTS is kicking my butt. I haven't had a symptom-free day since October. I am pretty miserable most of the time. Today was actually the best day I've had in a long time and on a scale of 1-10 (1 being no symptoms and 10 being all the symptoms) and I'd give it a 5. I'm dizzy at least a few times throughout the day pretty much every day. Nausea and fatigue are my worst symptoms. I'm trying so hard not to lose any more weight but it's so difficult because I can't make myself eat while I'm so nauseous. There have been days where I know I'm not taking in any more than 1000 calories and my heart rate is high, I'm working, and I know I'm burning more than that. Today I ate two full meals (breakfast, snacks, lunch, and another snack) and it counts as a win! Finding calorie dense foods that are gluten free, dairy free, and high in protein (carbs make my pots symptoms worse) is kind of tricky. I drink plain, unflavored Propel water and try to get in a Gatorade a day to get enough sodium.

I started seeing my therapist again to help me to cope with the havoc chronic illness is wreaking on my life. She's encouraging me to be more open about my struggles. When people ask how I'm feeling I tend to say it's fine, I'm okay, etc because I hate to sound like I'm complaining. My poor work besties get the worst of me because they get all of my honestly and whining. I really rarely tell people how I'm actually feeling, mostly because I feel usually "How are you?" or "How have you been feeling?" are polite questions and I hate to sound like a complainer. And obviously, Greg is a saint because he gets whatever is left after I've doled out all mental energy to everything else in my life. Sometimes the fatigue makes me feel like I'm trying to swim through jello just to complete each day.

This is hard. I feel like I can't be the mom I want to be because I am exhausted all the time. The fatigue I experience daily goes well beyond being tired. I'd kill for tired. Sleep fixes tired. Sleep does not fix fatigue. By the time I get home from work I don't have the mental or physical energy for dinner, homework, playing, snuggles, and kindness. I try so, so hard and I hope my kids have happy memories of me. I can't be the wife I want to be because I can barely stay awake later than the kids (and often don't) so we don't spend near as much time together as we'd like. We've been trying to finish the last episode of a show on Hulu for a solid week! My coworkers are amazing and so patient with me. I'm kind of a crappy friend right now but I'm doing the best I can. I hate to feel like I'm complaining or pitying myself because I know there are plenty of people who have a harder time than I do, but knowing that doesn't make my life any easier, if that makes sense. But we're making it work one day at a time.