Dear friends,
It’s been awhile since I have blogged or written to you on a personal note, so I am sending this out via the devotional mailing list as well.
I’ve contemplated what to share and when about what has been going on in my personal life. I don’t want my son to get on the internet in five years and read all about what I wrote about him. But I also recognize that my family needs prayer and that if you trust me with your daily struggles I should trust you with mine as well.
My son, Joshua, is 4 ½. He’s at that perfect age, where he left for daycamp today wearing both his Halloween “Dale Earnhart” race car driver outfit and “cat ears” on his head. I’m sure Dale would get a kick out o it. He has something called “sensory integration disorder” or “sensory processing disorder.” It’s not widely recognized as it’s own condition since it’s not yet in the medical text books, and I won’t get into all the details. But let’s just say he has some struggles that have made our day-to-day life a bit more of an adjustment than some households may experience. If you have a child that has to constantly be moving, wants a lot of hugs and “pressure” and who “won’t sit in circle time” (a few examples) you may want to buy the book “The Out-of-Sync Child” just to see if any of the pieces fit. Oftentimes kids with this get labeled all kinds of things and are put onto the ADD list or “Autism Spectrum” even though they don’t show signs of any of these conditions. My child’s first pediatrician had never heard of it and said with skepticism “where are you getting your information??” Now, all the professionals at the next level know exactly what we’re talking about, so that’s been refreshing!
Anyway, one of the biggest challenges has always been to get him to eat. He’s not a picky eater, but mainly a non-eater, surviving on carbs that are crunchy like crackers, cheese-its, chex mix, etc. He rarely ate candy, no meat, veggies, fruit, juice, nada. Nothing. (And yes, I can make art projects out of food that could go in the Smithsonian, as can he, but he’s still not going to eat it.)
There are a few reasons I’ve not shared all of this. One is because, compared to what a lot of you are experiencing, it’s pretty minor on the scale of health concerns. Two, I don’t want him getting on the internet in 5 years and reading about himself. But honestly, third, it’s because I didn’t want a wealth of advice coming my way about things to try to vitamins to give him.
I’ve been very involved in the sensory-yahoo groups and have spent the whole 4 years trying to get creative enough to introduce new foods, textures, and things like that into his life. I’ve talked to many mothers, read all the books, have bought a play-village’s worth of play-food, have baked cheese to try to make it crunchy, have one it all. (How many moms say “Praise the Lord!” and call everyone in the family when their child FINALLY eats a French fry at 3-years-old because it’s actually some form of vegetable?)
So please know that what I am really asking for is just prayer. I’ve got the rest covered for now. That sounds rather cold-hearted in some ways. But please know that as a “patient” of 15 years, I know how to do my medical research and where to find what I need for medical answers. And if I get 50 emails telling me what I’ve been doing wrong I’m going to bawl. Because every time I visit a new doctor, I have to sit down for 30 minutes and explain everything that is unusual about my child and all the struggles he has… It’s not easy. So, please… just pray for us.
Overall, the last year he has grown up a lot and in some areas he’s thriving, but in June he had a simple choking incident over a potato chip and threw up some milk. It scared him, and I knew he would never eat chips again, but hey, a mom’s dream right? No potato chips in a kids diet? No problem!
Instead, however, he decided not to eat AT ALL. So, he’s survived on Vitamin D milk since June. “You don’t mean he’s not eaten at all since June?” a new pharmacist just asked me. “Uh… yes. He’s not eaten at all.” (Well, 6 bird bits of corn chips and a crumb of graham cracker.)
Yes, he’s currently in therapy (and therapy and more therapy) and we’ve met with all kinds of doctors and a psychiatrist and are trying different therapies and other treatments. We’ve been trying to figure out any way possible to avoid a feeding tube (which he would promptly rip out anyway.)
We finally got through the waiting list for Children’s Hospital and had another appointment last week, so will start more therapy there “when they call us” (could be next week, could be January. The list is months long but they move the kids with feeding issues near the top, so we have no idea.)
The good news is that his blood work came back okay enough to not have to check him into the hospital, and that he’s recently started accepting a little bit of pediasure into his milk. We’ve got medicine going into apple juice which we hide in pediasure, which we hide in milk, so it’s rather a little chemistry project daily.
We’re also starting something called “brushing” with will hopefully make things such as haircuts and teeth brushing less traumatic for him. There are more issues we’re coping with as well, but this is all I want to make publicly known at this time.
So, that’s the update in my household. We found a new pediatrician who made out a list of all the specialists to see immediately and these appointments all started to fall during Invisible Illness Week. My husband took two weeks off of work and we made the rounds for them and are now on the second round.
Between starting preschool, and 1-2 other appointments per day for Josh, life has been chaotic. Between all the “yucky” appointments we’ve tried to fit in a lot of fun such as trips to Chuck E. Cheese, Legoland, and the parks.
So if your email has not been returned promptly or your order was messed up, please know that I apologize, Rest Ministries
is what I do between the hours of midnight and about 4 a.m. But during the days I’ve had a lot of things to focus on and am coping with my own illnesses, rheumatoid arthritis and fibromyalgia.
It’s always the worst this time of year because in San Diego
, as yesterday, it was down to 46 degrees at night and then 88 degrees during the day. My shoulder feels a bit like someone took their “Barbie Lisa” (yeah, just an example, no Barbie am I!) and pulled the arm off and then tried to put it back on, but it’s crooked.
So, all I can ask for is prayer for all of us. I’ve often read that if Satan cannot “get to” your ministry or you, he will go after your family… and that is how I’ve felt. I know some of you must think that I am either a bit dramatic or a liar, because I may complain about all the chaos and aches and then announce three new projects I am working on. I simply cope best this way – it’s crazy but true.
When I feel overwhelmed I find a new area I am passionate about so that I have something “fresh and fun” to work with while I get through the daily-ness of the rest of it. I’ve always been that way and my greatest struggle is to “be still and know that He is God!”
And if you’re wondering about HopeKeeper Magazine… it still exists and I am trying to reach the designer now. It was just about ready to go a few weeks ago and then she lost the entire thing in an electrical storm on her computer. She felt terrible that she hadn’t backed it up… what could I say?
Please know that this is weighing on my heart too, as many of you have subscribed and are wondering where it is. It’s coming! And we are planning on being on a regular schedule again soon. Each time we go to print it’s about $10,000 for printing, postage and design, so it’s a large investment and a bit scary. I recently heard that Fibromyalgia Aware Magazine is a $100,000 investment per issue, so maybe $10,000 doesn’t sound so bad. But when I am putting it on my credit card… it sounds like a lot!
BUT… between your donations and hopefully new subscribers when the next issue comes out, we will be able to be much more schedules in the soon future.
The Lord is doing amazing things through Rest Ministries
and providing for us. He’s also providing a fabulous medical team for my son and his various treatments. Please join me in praising Him for this, but also in prayer, that our needs continued to be met for both the ministry and my family. And that the emotions of it all stay within the boundaries of trusting God completely with that which He has allowed into our lives.
God bless,
Lisa
We ate breakfast at the hotel buffet and sat next to two families also from Poway. One said they thought their house was okay, according to news reports. The other woman said her husband had [illegally] gone up to see about their home. And it was the only one left on the street. It was near Lake Poway (about 3 miles north of us, where the "multi-million dollar" homes are -- definately not our neighborhood!) She thought the neighbor's wood pile may have "sucked" the fire over their home along with her own plants she's planted to try to be a fire deterrant.
Josh seems to think we are on some kind of weird vacation. Especially since the cat came! We're in La Jolla and can't go outside without white flakes of ash falling on you. But everywhere you go people are on their cell phones talking about it and the TVs keep replaying horrible images we'd rather not see over and over. Over 500,00o people have been evacuated, the most in CA history.
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