Tuesday, September 29, 2015

Life With A Medically Fragile Kiddo

Having Dottie has been such a blessing in my life. She's taught me patience in the hardest and best way possible. She's taught me how to speak up for my babies, and myself. She's taught me in such a clear and consistent way, that life is short and fragile, and to grasp these mundane moments of mommy-hood and really appreciate them. 


Then there's days like today that are hard. Just plain hard. When both of the babies are sick with some type of respiratory junk, when we have breathing treatments for both of the babies every 4 hours, plus multiple medications. 

Having a medically fragile child like Dottie can be challenging. Something like what the kids have now, some typical respiratory junk, can send her to the hospital for several days. Like I said, it's just hard. 

And here's where the worst part comes in. Our pediatrician whom we've been with since Johnny was 2 weeks old, and whom I love dearly and have the highest respect for, is talking about pulling Johnny from preschool. 


With flu season coming up, and knowing kiddos bring home every possible bug they can home from school, I do see her point. 

Our main goal is to keep Dottie off as many meds as possible, to keep her home and not in the hospital. 

But then I think about how excited Johnny is when I pull up to his school. I think of the pride on his face when we come home and pull his school work out of his backpack and talk about it and hang it up on the garland I put in his bedroom especially for school work. 

I think of how his teacher gives me updates every time I pick him up from school, and how he literally doesn't want to leave, putting his little hand up to me and telling me "No!" when it's time to go. 

He loves going to school. And I feel that he needs his own 'thing'. One thing that's just his and his alone. Something that he looks forward to every week, and gets excited about. 

He's not going to school so I can have time off from him 8 hours a week, he's going to school because I want him to enjoy the idea of school like I never did. I don't want him having anxiety or stress when he thinks about school, I want him to be encouraged and to actually look forward to it. 

I want him to be independent (not that he has any issues with that aspect, frankly). 

It's one of those things - do I pull him from something he honestly loves and enjoys, to protect the family and especially Dottie, or do I let them both catch and suffer every little bug and possibly the flu when it strikes every year ? 

What do I do when he's 5 and it's time to start kindergarten ? Do I home school and keep him isolated (not that all home schoolers are isolated - but he will need to be in this scenario because of Dottie). 

None of it's fair. Dottie having panhypopit isn't fair. Johnny possibly not living what most would consider a normal childhood because of Dottie isn't fair. Having a chronically ill child who will have her own challenges that I've not even touched on in this post, isn't fair. 

One of my main concerns in life is to afford BOTH of my kids as normal an existence as possible. 

I want my babies to be babies, and be carefree like they should be. They are both very young now, and it's challenging to say the least - what will it be like in 4 or 5 years ? Or 3 years ? How do I find the balance that being in this unique situation so desperately requires ? 

Sorry to get so deep on this post. I typically like to keep things light and fun, talking about birthdays and fun events like Day Out With Thomas - but this is real. This is my real, real, messy life with two kiddos, one of whom is medically fragile - and the other who just wants to be your typical toddler with boundless energy and curiosity. 


1 comment:

Toofeego Threads said...

What a heartbreaking, tough decision to have to make. There are so many different pros and cons here I cannot even fathom what you are going through! Just know that whatever decision you do make, it's known that you did not take it lightly. It's not one kid or the other. It's never as simple as that. Xoxo