"Listen to the mustn'ts, child. Listen to the don'ts. Listen to the shouldn'ts, the impossibles, the won'ts. Listen to the never haves, then listen close to me... Anything can happen, child. Anything can be." - Shel Silverstein

Tuesday, February 9, 2010


I have really being feeling torn lately.

It is no secret that we trach parents try to keep our kids quarantined for the Winter months, those months we have officially nicknamed "the respiratory season". It is no secret that, if our kids get exposed to germs, they tend to get sick faster and go down harder than most. A simple cold could develop into pneumonia and land them in the hospital.

It is also no secret that exposing typical kids to typical germs helps them build their immune systems. If they get a bug, their bodies learn how to deal with it and fight it in the future.

This is where I'm torn.

We have been incredibly blessed by Marissa's good health. Up until two months ago, she hadn't had even the slightest sickness, not even a sniffle, since February '09. We know this is partly due to her own immune system. She has just never been a very sick kid, although when she does get sick, she gets hit hard, since she is prone to pneumonia. But, it is also largely due to the fact that we try to keep her pretty isolated during times when the sickies are out in full force. If you remember, I was incredibly sad that we could not take Marissa trick-or-treating with friends for Halloween because she hadn't gotten her H1N1 shots yet. And, when we took her to a meeting at a school for her IEP at the beginning of December, she came down with a cold the next day. Luckily, and thanks to zinc and her other vitamins, she never got more than the sniffles with that one.

It is clear that her immune system is not as strong as it could be, simply because we do not expose her to germs and allow her body to build resistance to them. Are we doing the right thing? Are we doing Marissa a disservice by not only not letting her body build resistance to germs but also stunting her social growth? These are the million dollar questions.

We have several friends whose kids are in Marissa's age group and have birthdays in the Winter months. In fact, most of them do, as does Marissa. We have never had more than a family birthday party for her. We were just invited to two different kid's parties on the same day. We really considered going to the parties because we felt Marissa would have a blast and benefit from the social interaction. We knew we would be taking a big risk. As it turns out, we had to decline both invitations because my brother is planning on coming into town that weekend, but the stress and conflicted feelings were on the surface for several days.

We have learned that Marissa is such a social person when given the opportunity to be around other people. She loves to play with other kids, although we need to help her work on her lack of understanding about personal space. : ) Just this last Sunday, we took her to a Super Bowl party my good friends were having. There were lots of kids there and Marissa jumped right into the fun with both feet. There was one little guy with a cough and a runny nose that made Jeremy and I give each other the sideways glance that said "Oh great, what have we done? Now she'll be sick for sure!" She has yet to show us if she will be affected by this interaction but we are crossing fingers and saying prayers that she will stay well.

This same gathering of friends showed us how Marissa needs to be exposed to social situations more often. After about three hours of being in the middle of a very noisy and lively bunch, she shut down. She had been playing with a friend of ours who was lifting her in the air and she was having a blast. All of a sudden, after about the eighth time he lifted her in the air, she got a really panicked look on her face and started crying really hard. Granted, the room had just filled with several people and was very loud and full of activity all at once but it made us realize she still has issues with knowing how to deal with social situations. She just flipped out. She would not calm down and we had to scramble out of there. She got overstimulated in an instant.

Another side of this issue is when she finally gets her trach out (hopefully by the end of this Summer) we will be enrolling her in school as well as letting her play with friends more often. The problem arises when we consider that, because she has not been exposed to the typical germs kids her age have and then, all of a sudden, we are thrusting her into every social situation imaginable, she will likely get sick quite often for those first few months. This prospect makes every former trach parent shake in their boots. If she gets sick enough, her airway might close down or she may need to be intubated, which could very likely lead to her needing to be re-trached.

So what do we do? How do we decide which is more important, Marissa's physical health or her social skills and growth? And how do we know if we are doing the right thing by isolating her or if we are actually doing her more harm by not letting her build natural immunities?

Just once, I just wish there was one clear best answer.

Just once, I would like to know what it is like to not feel torn.


Colleen said...

I feel torn too since we are totally homebound in the winter. Maybe you could start having her exposed gradually before she starts transitioning to school. I wish there was an easy answer. Just remember that you know her better than anyone else and what is best for little Rissa Roo.

The VW's said...

I struggle with this too. I used to keep Gavin at home more, but then I decided to start going with the flow a little more.

It is so scary when your child has airway or lung issues and once you've spent time in the hospital because of it, you do become unsure of what to do!

I think that building an immunity is a good thing, especially if she will be going to school soon. But, take it easy and don't go overboard.

Being a parent to a child with these issues is way harder than it is for the average child. I used to not care about this stuff with our other boys, but since the word "hospital" and "ventlator" entered my life, I think a WHOLE LOT differently! We have too, but I suppose we have to live and let our children live too!

Sorry you are having to feel torn! I totally understand! One thing that happens a lot more for our family since Gavin came around is handwashing! He doesn't even touch much of anything, but I still wash his hands or use a wipe if we've been out.

Since getting out with him more and with him going to school, this seems to have helped a lot! He has remained fairly healthy and when he has gotten sick he has handled it much better than he used to handle illnesses.

I am still fearful, but I'm getting a little more at ease. Hope you can be less afraid of this too some day soon!

All this said, knowing that Gavin is not trached.....so I don't really know how I'd be if he were???

Anyway, hang in there! This too shall pass, I'm confident of this! LOVE, HUGS AND PRAYERS!!!

Lacey said...

I think you can do both! Make sure everyone washes their hands and are not sick, and then play! If you take her to the store and stuff your already doing good and exposing her to everyday things! You know how I feel, that I can't live my life and Jax's in a box. We take him everywhere. This bug Jax got this time we have no idea were it came from. The boys haven't been in school and none of us are sick. They will catch the bad stuff whether you hide at home or not!

Janice said...

I think I'd start with a few friends that have children that you can make play dates with for an hour a week. Rotate who you see. Preplanned so that you can control better the exposure - if the other child is sick you do it another day. Take extra precautions like cleaning her hands and the other child's - this could be a game.

I think that if you incorporate your friends help and partner with them a goal to socialize Marissa, you can accomplish a lot.

I wish I was a 3 year old. I'd come play with Marissa all day!

Love you guys.

Kendra said...

There's a lot of love and wisdom in those previous comments! Sorry it's so hard to be torn--there's got to be a balance somewhere. You'll find it for both of you...Pray for wisdom and act in faith! You're an awesome Mama!

Nana and PaPa said...

I agree....lots of good ideas. Try them on for size and see what happens. I understand how tough it is to know a good balance, but I think your blog friends have come up with some workable ideas. Love you...have a better day!

Anonymous said...

I would be happy to send you all my used kleenex. Then you could control her exposure. More on good days, less on bad days.

Hope said...

I agree with some of the others. I struggle with this too and I know there's no clear answer. *hugs*

John and Jenna Gensic said...

I feel the same way. Mikan loves to be around kids. Winter with special needs kids sucks. Respiratory illness sucks. Dealing with these issues sucks.


Queen Mommy said...

Lily only had her trach for one winter. She was hospitalized 3 times for respiratory stuff during that time. We were *mostly* homebound; however, we still took Lily (and a nurse and our plethora of equipment plus back-ups) to my SIL & BIL's wedding, to church maybe once, and to the aquarium in early spring (when she'd recovered from RSV and the stomach flu). As it warmed up, we also played in the yard a lot, which is a good way to be out and about without exposing kids to a lot of germs (even in the winter). With that said, Lily also had 2 sisters, lots of homecare nurses to play with her, AND her therapists. She was used to activity and noise and the busy-ness of being around other kids.

I think it's worthwhile for Marissa to have an opportunity to "socialize" with other kids (I use quotes because kids still aren't really playing together at 3...it's more the side-by-side playing). Maybe you could try hosting a playdate for another friend and their child/ren a couple of times a month. Even an hour would be good for Marissa and for you. Adult conversation is always a good thing! This way, it's also more contained....on your terms, and Marissa should be more comfortable in her own environment.

As for the "to expose or not to expose" debate, I think it's reasonable to say that when kids are bigger they're going to be able to fight things off better, even if they don't have the same immunities that other kids their age do. Bigger just makes it easier to treat. Their airways are bigger, their veins are bigger, I mean, it's just easier. Just like how scary it is when a baby gets RSV, as opposed to an older kid.

Thankfully spring will be here soon, and you'll be able to get out and about way more! Then, take Marissa to the park, to the zoo, even to the grocery store. It'll be good for her to have all those sensory experiences.

For now, I think you're doing the right things. And, hopefully, next winter will be easier for you guys!