***This is something that has come up again this week! While you’re reading and pondering, we’ll be at the doctor…again!
Until next week…
For almost 5 years, I’ve done a whole lot of worrying.
I worry about germs. I worry about sleep schedules. I worry about doctor’s appointments. I worry about the future.
I think it’s in our nature, right?
I was talking to a friend and she told me that I needed to “cool it with the hand sanitizer” after I watched her kids lick ketchup off the ground.
It stayed with me all day. It bothered me. It ate at my fragile psyche.
But I remembered…I am a Hand Sanitizing, Clorox wipe toting, Lysol spraying fool. I am preserving my son’s life. That is not me stretching the truth. You see, he can’t get a stomach bug, because he can’t throw up. Him throwing up could seriously damage his GI tract. He also has terrible lungs, and is immunocompromised.
So, yep, I worry. I want to preserve his life. I don’t want to hear how a pound of dirt is fine to eat in a year. I don’t want to even RISK taking my kid to the mall play area or Chuck E. Cheese. It’s not worth it to me.
This has put me in an isolation–we’re hermits. People don’t call anymore. They don’t check on us. They think we’re bizarre.
I may be all of those things, but my son is still alive. And he will be…for as long as God entrusts me with him.
Do little things get to you? Are you a worrier? Wanna sing Kumbaya and make S’mores?
I so hear you. While my boys’ issues are not as severe or life threatening as Jack’s I hear you on the germs thing. The youngest gets a bug and he pukes.. Now we know it is reflux and a GI tract that slows down when he is fighting a bug. He is also super prone to dehydration. This one people sure don’t get. They see him drink from an open top cup so think he is fine. However he is only taking sips as all the effort that takes is hard. He drinks better from a cup with a straw.
So not enough fluid:bowels end up backed up, headaches, vomiting. Yet to everyone else he is fine. Sorry I have had a tough few days with this comment of he is “fine”…..Tired of explaining.
Campfire, smores ans kumbaya sounds wonderful….
Peace
Bless his heart! Yeah, I’m sort of over it. There’s a nasty bug going around and I had a student come to class actively vomiting. She was OFFENDED that I asked her to go home and not give the rest of us it…yet, I sit here and worry that people who are so ignorant to how germs are spread, are going to make my child sick!
It’s so hard to hear those things from people you hope would try to understand and be supportive. I have heard so many stories like this since my daughter was born and we became part of the “special needs” community. Both of my kiddos have a condition which requires hospitalization for illnesses most people consider trivial and annoying. They land us in Children’s Hospital for four days usually.
But we keep in mind that God knows our story. He knows what is ahead for us and why our babies are the way they are. He gave them to us the way He did for a reason. At least we don’t have to explain it all to Him. <3
It’s true Miranda…I spent a LOT of time praying last night for that hedge of protection around our house. We don’t have a Children’s Hospital, per se, so I’m looking forward to moving somewhere that can help us a little better as well.
Sigh
And big hugs
We live with the fear of a stomach too. My 9yo ds has epilepsy and takes meds 3x daily to barely manage it. If a stomach bug hits, he will need to be hospitalized to get his meds thru an IV. We keep hand sanitizer in our house by every sink, plus in his backpack, in every car… Handwashing often is a must. Unless someone has a medically fragile child, it can be understand how crucial these precautions are. But I don’t care, because they are not the ones that would have to sit by my ds’s side in that hospital room when he screaming during an IV insertion.
Thank you Sange! YES! We have sanitizer all over the place and we use paper towels in our bathrooms rather than traditional hand towels. (I actually get the C-fold ones from Costco or Sams and put them neatly in a little basket…it works!) And when we go out, if I know we’re in a crowd, he wears a mask. I wish people would get it. It hurts my heart. Stay away Stomach Bugs!
Perhaps a walk in these special Moms shoes with the accompanying worry and heartache might make a few people more aware of the need to stay away when they are sick.
Peace to each of you who face this worry.
I have offered other folks to walk in my shoes many times…and surprisingly, no one has volunteered to try!
You know, perhaps that friend is not such a friend. If she understood your situation, she may realize that a simple comment like that would be hurtful.
Last November a similar thing happened to me and it made me re-evaluate my relationships and how my valuable time was being spent. I decided I wanted it to be with people who supported me, understanding my situation and loving me for it.
8 months into this change and I have no regrets.
Vanessa, I totally get it. And things are changing…. It takes me awhile sometimes!
I don’t think I’ve posted replies on this site before. I generally just read the blogs and try to glean as much helpful information as I can. I consider my son to also have “special needs” but, thankfully, not in a life-threatening way. He has ADHD and SPD. His new psychiatrist is adding Asperger’s and a sleep disorder in the mix to consider. So I worry too, constantly. And I’m very sleep-deprived.
I’m replying out of concern, perhaps also out of ignorance, so please forgive me. I’m worried that the toxic chemicals in the Lysol and Clorox might be further compromising your child’s health — including his lungs and his immune system. Dr. Doris Rapp (and others) has done extensive research on the harmful effects of these types of cleaners. I just think it might be worth looking into further. I wish you all the best.
Karen,
I do appreciate your comment. And I have done my research. I utilize nautral cleaning products as much as possible, but the fact remains, Lysol and Clorox wipes are made for portability. Can you imagine having to worry about the person who has touched the door before you, or who has eaten at the table you’re sitting at? Most people don’t.
And, I totally get the sleep-deprived bit…I haven’t slept more than 4 hours a night in 4.5 years!
Thank you, Heather. I’m glad you’re using natural products when possible. You’re right, I cannot imagine the level of worry you must have about germs. One way my son’s sensory processing disorder manifests itself is his need to put everything in his mouth. He used to lick stair rails and shopping cart handles! At school, he even got a chewy tube (made especially for kids like him) stuck in his mouth sideways. I wonder if your friend’s kid who licked ketchup off the ground might have a similar problem? My son once went to a birthday party where popcorn got dropped all over the ground — guess who was eating it off the ground?
I wrote something similar on my own blog last week. I TOTALLY understand what you’re going through. In fact, my husband’s grandmother said “Wow. you are really anal about hand washing” No, I’m really anal about keeping my kid out of the hospital.
This is the post I wrote- http://beautifulsideofhectic.com/2011/07/ive-lived-in-fear-for-the-past-3-years/
Cheryl, I’m coming to visit!
Why does everyone think they are an authority on your kid(s)? Makes me crazy. When my former micro preemie twins came home from the hospital (5 long months) I was questioned many times about how sanitary I kept things and how anal I was about visitors. Hello?! Do you remember where my kids lived for the first months of their fragile lives?! I was sick about them catching a bug, but a lot of people just didn’t get it. Now, over a year later, they are healthy and strong and I have eased up…a bit…on the sanitary measures. But the commenting on what’s best for me/my kids still doesn’t end. My worry about germs just transfered right over to my worry about my son’s CP. How many people have told me he will be fine? Stop worrying. They can tell everything’s going to be ok. I repeate – makes me crazy!
So how do you like that for a rant?!
I think it’s fantastic…because I totally GET IT!
GAH!
Oh my goodness! You girls sound so much like me. My little boy can’t handle bugs either. Fever and dehydration lead to seizures. Stomach bug, rotavirus, micoplasma pneumonia lead to life flights to children’s hospital because of long seizures. Just got back Sunday after being transferred by ambulance to children’s hospital. He had a 102.9 fever and a 7 minute seizure inthe ER. So I too hate germs and crowds and anyone who coughs. I just want my boy to stay well and not lose more weight from being sick.
EXACTLY. Frustrating and sad and worrisome…all at once!
Ugh Heather. Hope Jack is better.
Gastro issues raised its head again in this house again last week…. He was so sick. Managed to turn him round and now some new medication is helping…
Peace
Jo
Comments on this entry are closed.