Monday, September 5, 2016

Constant State of Joy and Mourning

When people ask me what it's like to be a special needs parent, I don't always know what to say. Isaiah is our first child, so for four years this was really all we knew. I often think, what's it like to not be a special needs parent?

Special needs parents aren't saints. For most of us, we didn't choose this role. But we did choose to step-up, to do the best we could, and to give our kids the best lives we possibly can. We didn't have any preparation. Our kids don't come with instruction manuals. Just like any other new parent, we make it up as we go.

But I can say this to sum it up: being a special needs parent puts you in a constant state of joy and mourning.

Every day, everywhere you go, you are reminded of the things that "normal" kids can do. Normal kids who stare at mine while we are out and about. Normal kids who ask questions while being hushed by their parents. Normal kids who can do things so simple, like walking and talking, that my child will never be able to do.

There is a constant absence of time in our lives. Things that might be no big deal for other families require specific planning on our part. And with Isaiah being in a wheelchair, he literally can't go everywhere we want him to go (like hiking, one of our previous favorite activities).

Isaiah's little sister, Belle, is 18 months old. It is so fun experiencing "firsts" with her! Like her first words, first steps, first tastes of food, first dances, first run, etc. Even her first taste of chips and salsa today (she's mom's girl). But it is hard not to be reminded of all the firsts that Isaiah doesn't get to experience. I'll take out my camera to capture one of Belle's firsts, and realize I haven't taken a picture of Isaiah in a while. Then I feel the mom guilt. Guilt that I am happy for Belle's first, how crazy is that? 

We learn to celebrate the small things. Our children are miracles. Isaiah had a 3% chance of surviving past birth, and a less than 50% chance of making it past his first birthday, and now he is almost five!

Little things I never would have thought of are a reason to celebrate in our house. Isaiah slept through the night? Score! Isaiah pooped today? Hooray! Isaiah went three days in a row without throwing up? Let's party! These things seem mundane, but they make our lives a whole lot easier when they happen.

Things like getting refitted for his wheelchair, when he can finally sit comfortably again. Getting a stander adjustment, so he can stand up for over an  hour at a time. And working with a communication device, which proves that although he can't traditionally communicate, he can process the world around him (more to come on this later).

So between the two, as a special needs parent, I am on a constant roller-coaster of emotions. Every day is a win, but also a loss. I can be overcome with tears of sadness, and flooded with tears of happiness in the same day. It's a magical balance that no one can understand unless they've been in my shoes.

To all those out there who understand my struggle, thank you. To all my virtual friends who've helped me along the way, thank you. And to all those who maybe haven't been there, but try their best to help, thank you. I appreciate you all more than you know. But the most thanks to God, for always helping me through and giving me the amazing opportunity to be a mom.

One of our joys: what a good little sister Belle is to Isaiah.
Unconditional love. 

Wednesday, August 3, 2016

Work Life Balance

We've posted about this before, but it comes up again and again. Having any children, regardless of their abilities, puts a strain on families trying to balance out their working life and their family. Having a child who needs 24/7 care puts even more stress on families. Which leaves us making huge decisions in terms of our working arrangements.

As you know, finding a PCA has never been easy for us, as there are few who are reliable enough to count on in order to get to work everyday. In fact, we've only had one out of about seven that we went through that we actually felt comfortable with. We went through a nursing evaluation and found that Isaiah would qualify for a nurse to come and take care of him in home instead, but we ran across many roadblocks there too.

First, there is a shortage of home care nurses, so the likelihood of us having someone consistent was low. Having to train someone new in takes a long time, and we couldn't afford to take time off work everytime someone new comes into our house. In addition, do you know how hard it is to trust someone in your own home? Really hard. Especially considering some of the hardships we have gone through already.

So this spring, we decided that it was time for me to leave my job, and focus on the children. Now, I'm not one who EVER thought I would give up working. I love working, and I was always striving to do as much as I could with dreams of climbing the corporate ladder. So I didn't totally leave my job. I was able to stay on as a casual employee, to help out when others are out of the office. I work maybe 2-10 shifts per month, and those shifts are on my schedule so they are from 2:30-6:30 after John gets home from work. I feel rather fortunate to be able to do that, as it keeps my skills up.

Am I sad that I don't have the life I always dreamed of? NO. Staying home with the kids has been way more rewarding than anything else I could ask for. Is being a full time mom challenging? YES. It's way harder than going to work everyday, and I mean that 100%. But now, I don't think I would trade it for anything else! The love I feel and see everyday is amazing!

Belle climbing Isaiah's chair to say hi!

Isaiah getting a hug from Belle.

Belle holding Isaiah's hand. <3

Friday, July 29, 2016

Surgery and EEG

Hello everyone! Long time no posts. Everything has been going well for Isaiah. We've had a busy summer, and I hope to update you on some of our adventures soon!

Last week, Isaiah had two procedures. On Tuesday, he had a video EEG done. If you didn't know, an EEG monitors your brain activity. It is used to diagnose seizures and abnormalities. It was a 24 hour test, so we stayed at the hospital from Tuesday to Wednesday.

Isaiah's neurologist recommended this test because he has spells of uncontrollable laughing and or crying that are unexplainable. When I say that, I mean like he laughs so loud and hard he can barely breathe, he can't be stopped, and there was nothing provoking it. The same with crying. But, of course, this didn't happen while we were in the hospital for the test.

Regardless, they could tell us that, while the spells may very well be seizure activity, they are not causing any damage at this time so we don't have to worry about that. Which makes me feel good, because I didn't want him on any more medication. They told us that his regular brain activity is slower than "normal" but that it is right in line for kids with similar diagnoses. So, while we still can't help the spells, at least our minds are put to ease a little bit.

Then on Thursday we went back to the hospital for surgery. He was having the metal hardware removed from the procedure he had one year ago, botox in his salivary glands, and his regular botox injections to his arms and legs. They also did some phenol injections, which like botox, are also for muscle tone and spasticity.

As usual, things didn't go super smoothly while we were there, and despite a super long wait and a miscommunication regarding his medications. Isaiah did great! We went back home that night with only one added pain medication, besides Tylenol, and he has already weaned off both of them! He is back in his stander and was able to go into his wheelchair right away. Success!

Here is a pic of Isaiah with his EEG monitor on. His sister needed to sit right next to him in bed!

Where did Belle go?

The nurses put a sticker on his head, because... BATMAN!

When coloring gets too intense.

Sunday, January 31, 2016

New Stander

Isaiah finally got his new stander this month! He hasn't had a usable one since prior to his surgery in July. After his surgery, his hips were so much wider, that he didn't fit in his old one. And thanks to all the red tape and bureaucracy in the healthcare system, this is how long it took to get a new one approved. It took hours on the phone just to get people to cooperate and do their jobs, when we knew it was medically necessary and able to be approved in the first place.

Now he stands for up to an hour, at least once but usually twice a day. He LOVES it! It gives him a new perspective. It is good for his muscle tone. It helps with his bowel function. And it gets him up from his harassing sister once in a while, haha.

Belle has adorably learned how to say Isaiah's name within the past two weeks. She says it all day long. She is always trying to be by him, to bring him toys, to rub his head, and to lay or sit by him. It is really sweet to watch. These two are going to stay the best of friends.

(Check for Belle photo-bombing the picture of Isaiah in his stander. Such a goofball!)

Thursday, December 17, 2015

Our Normal

Isaiah is the greatest blessing we could ever ask for. He has taught us so much, including to never take anything for granted. While we do our very best to remember this everyday, it is sometimes hard to remember. What we consider as "normal" in our everyday lives, most couldn't even begin to imagine.

At least once a year, we have to be evaluated for any assistance that Isaiah might receive. Be it PCA hours, or nursing care, or even assistance for the many, many extensive things that Isaiah needs. Each time we do this, we are reminded how our lives are so vastly different from those around us. Here is an example of a typical day with Isaiah and Belle:
  • Wake up at 6:30 a.m. to give him an injection of medicine for his diabetes insipidus.
  • Get his bottles and medicines (there are eight of them as of now) drawn up for the morning, mid morning, and afternoon bottles, hope Belle doesn't wake up before you get Isaiah up.
  • At 7 a.m. give him his first medicines and start his feeding pump, wrestle with Belle while she tries to get into everything and cries because she isn't getting attention.
  • Between 7 and 8 a.m., give him a nebulizer treatment, a cough assist treatment, and suctioning, try to distract Belle by coordinating her morning bottle during this time and hope she happily feeds herself, feed her breakfast sometime in here too. If Isaiah is at all sick or congested, repeat these treatments every four hours. 
  • Provide physical therapy stretches, stimulation via sensory activities, practice communication with his PODD book, etc., try and do things that will entertain Belle and Isaiah at the same time.
  • About 10:30 a.m., start getting him ready for school, three days a week. He needs a rinse and fill of his feeding bag and more medications, hope Belle is ready for her nap during this time so she's not crying for attention.
  • Finally get him on the bus at 11:30 a.m. If the nap is working, have a few minutes to get lunch in and wash bottles and medicine syringes while she is sleeping, if not, squeeze it in while she is eating a snack, then do my best to make sure her needs are all met and that she is getting attention she deserves, feed her lunch, and run errands while I only have one to carry/push around because it's impossible with both by myself.
  • For non-school days, try and find activities to keep them both busy and happy for the afternoon.
  • Isaiah gets home at 2:30 p.m., this is when Dad takes over (after 8+ hours of working himself) so I can work from 2:30 to 6:30 p.m. Isaiah is sometimes overstimulated and cranky or asleep. Coordinate another rinse and fill of his feeding bag and medicines, hope Belle is happily playing .
  • Let Isaiah rest for a bit if he had school, otherwise try and keep both of them entertained and happy. Try changing his positions so he doesn't get uncomfortable. Change multiple diapers, all day. Do more therapy stretches. Make phone calls to order medicines or check on the status of equipment needs, county applications, etc. 
  • Shot time again at 4:30 p.m. 
  • Coordinate feeding dinner to Belle, trying to make food for us adults, keeping the house somewhat orderly, chasing Belle around, and still trying to find things for Isaiah to do. Let him watch some TV shows so he doesn't get bored. Re-position him every 5 minutes. 
  • Start getting ready for bed at 6:30 p.m., including baths for both of them on most nights. Have to get in the tub with Isaiah because that's the only way we know to bathe him. Give him a suppository to help him go to the bathroom and clean him up. Get all his nighttime medicines ready, rinse and re-fill his feeding bag, get him positioned just right in bed and tuck him in. Get Belle ready for bed and feed her a bottle.
  • 8:00 p.m. finally (hopefully) have both the kids in bed and breathe. Maybe try and fit a workout in? But feel so exhausted that all you can think about is getting in bed. Drag yourself to workout.
  • 10:00 p.m. after cleaning up the house, working out, and showering, finally get to bed. Hope that you can sleep through the night. Get up at 11:30 p.m. to turn off his feeding pump, and randomly as either child is known to wake up at least a few times a week. 
THIS is our normal. It is us dedicating 100% of everything we have to take care of our kids. I'm not asking for any sympathy or support, just wanting our family and friends to know what we go through on a weekly basis. To know why we can't always meet up  or make plans when you want us to. To know why we sometimes come off as tired and cranky. To know why we feel bad about ourselves for the weight we have put on in the last 4 years but are trying like heck to get back off, wanting nothing more than time to workout or run but knowing that every minute we have is consumed by our busy lives. 

We love and appreciate each and every one of our friends and family. We wouldn't change a thing about our kids, nor would we make any decision differently than we have. We just ask for strength, love, patience, and continued friendship.

Saturday, October 17, 2015

Isaiah is Four!

A little late on this post, but last month Isaiah celebrated his fourth birthday! He loves pirates and one of his favorite shows is Jake and the Neverland Pirates, so of course we chose a pirate theme for his party! It was super fun. We had a ride on the pirate ship (pontoon), some swashbuckling snacks, and a treasure hunt with gold doubloons a plenty. :-) 

Isaiah is by far the cutest pirate I have ever seen. I love that we are able to learn his likes and dislikes and make his parties as memorable and fun as we possibly can. Isaiah doesn't have to say a word, we know he is having fun and that he appreciates the littlest gestures. I love my special boy! 

Back to School

Isaiah's return to school was a little late this year. He was still recovering from his surgery. He finally made it back in mid September. And he was sooo happy to get back into his routine! Although it was pretty tiring for him. I love seeing his art projects coming home, and hearing from his teachers how great his days are going.

Isaiah had to get all new school clothes. Any that he had from before no longer fit, because after his surgery his hips are so so much wider. Luckily he just had a birthday! He outgrew his standing frame and his wheelchair too because of this. We were able to get his wheelchair seat re-done, but we are still waiting for insurance approval to get a new stander. What a pain! I feel bad because he loves to stand so much, and he can't until we get this.

Here he was looking all spiffy in his Jake and the Neverland Pirates shirt and his new jeans for the first day back to school.

Monday, August 31, 2015

Cast Off

So Isaiah had his cast off about a week and a half ago. Things are very much the same. He is still not very mobile, and it's like starting over with pain. After not moving for so long he is very stiff and tender.

We still have the hospital bed to keep him comfortable. He still spends the majority of his time here. We take him for short walks and out and about. We had thought we could take a short camping trip but it ended up being way too much for him, even though we were able to position him relatively similar he was whining and crying pretty much the whole time except when he was sleeping.

He starts physical therapy next week. He also gets his Botox injections this week. Hopefully these two things will help him be more comfortable. In the meantime, hopefully some sister hugs will help.

Tuesday, August 18, 2015

Cuteness Cannot Be Controlled

Anytime I am away from my cuties, I am always checking my phone's photo gallery just to get a peek at them. They are too adorable! I try to take at least one picture a day. Even though Isaiah is stuck in bed healing, he still has some smiles. He gets some tummy time with the help of his dad on a nightly basis, but otherwise, its only one week til his cast comes off!

Monday, August 3, 2015

Making it Work

One thing that lots of special needs families struggle with is finding care for their children and balancing work and family life. We have been struggling with this for a long time, and still do. But we have been through a lot and have finally come to find a solution that works for us.

We went through a few PCAs before finding one we trusted. She worked out for a couple of wonderful years. But we never really had a back up plan, since finding someone to fill in part time is even harder. When she recently decided to reduce hours, we understood, but were sad to see her less. Isaiah loves her and they have a really good bond. We tried finding a replacement and decided that just wasn't working out. We knew we were the best able to care for Isaiah and Isabelle. But in order to do this, one of us would have to leave our job. For practicality reasons, that was me.

When I approached my employer to break the news, I also proposed another solution. I could work a reduced schedule, while still coming in for meetings one full day a week. I didn't know if it would work for them, but figured it was worth a try. Thanks to my hard work and determination, they accepted this and let me keep working. So now I work from 2:30 pm to 6:30 pm four days a week and one full day. John gets home to take over at 2:30, and on the full day Isaiah's PCA stays with him.

I am thrilled with this schedule. I like to call myself a part-time stay at home mom. I get to spend more time with my cuties while remaining in the workforce. I have been working (slowly) toward my MHA, so this will continue to keep me up-to-date in the healthcare industry and valuable in the job market for the future.

I think things like this work out for a reason. Right when we thought we would need to take a major drop in our family income and struggle to get by, this just happened to work itself out. Although I am taking a reduction in my income, we are able to use some of the funds that would have gone to his PCA care as a consumer support grant, which makes us almost whole again by providing parent pay and helping with equipment needs.

Praise God for helping us work everything out and for giving us more precious time with our children.