It's been almost a month since I've touched base with our dear Ellie friends who I'm sure are checking in to see if all this paperwork stuff has been resolved.
Well the answer is...Yes and No.
Since August 3rd when we found out we (I) messed something up on the forms (not all of them are written in "English") it's been my full time job/mission to figure out what went wrong. As I may have stated before, it was "easy" to qualify for this program with all of Ellie's extensive medical documentation. But good news/bad news is now that she's out of the intense health situation she was in, now you have to shift and turn in different kinds of documentation. Stuff that I've never heard of before with typical developing children. And the short version of the long story is, it's not enough to show documentation that she has Down syndrome. No, there are special places you have to go to to confirm this beyond bloodwork.
So, we went to the places, we jumped through the hoops and we made a few friends along the way. Basically I had to pick up the phone and get on line and find out "how" to do all these things because apparently it's some kind of conflict for the state to tell parents what to do. You and your doctor have to figure it out. I owe our doctor's office a giant sheet cake by the way. I spent hours going over forms with them, sometimes leaving goldfish crackers all over their floor.
Bottom line - we should find out by Friday, October 30th. Three months now comes down to 5 days!!!!
While I had a minute between hot-gluing a Halloween costume and getting groceries I wanted to check in. I will get back to you with the decision they make as fast as I can jump back on line and post it. But I'll also be stealing Halloween candy from four little pumpkin shaped baskets, so I might be a little "busy" :).
I wanted to document a few highs and lows so I wouldn't forget these few interesting months we've had. Some of it will be hard to fully comprehend just reading bits and pieces but one day after I've long forgotten the small details I'll look back and read this and think - "Wow, that was my life!!!"
The place I have "lived in" for three months has been a place of fear and operating from a position of urgency. I was only able to do things that were "on fire" right in front of me...take a phone call, rush out the door to a therapy, scramble to get lunch made, keep everyone on schedule, cram in a couple of hours of lessons in the morning. No sewing for me and even housekeeping got dropped way more than I'm comfortable with. It actually felt alot like the days of having a new baby. Except my baby was this stack of paperwork that was sometimes spread out over the entire floor like a giant jigsaw puzzle. Clipboards, binders and hanging folders are my friends. Oh and also...pens that don't smear, sticky notes, fax machines, scanners, fast internet speed and two 500 packs of paper. That's right people - we've purchased two reams of paper from Walmart and are almost out again. I now have in my possession 6 court cases of families that appealed their denials from the program, manuals from the state on what the requirements are, CFR criteria (Code of Federal Regulations) to qualify for this program, DFCS best practices manual (they are the gatekeeper of your forms), copies of other people's forms they graciously shared with me, and every email I ever sent to anyone regarding this issue.
Mommy's work station:
Going to therapy for an hour and a half a week has been wonderful for Ellie. Getting out of the house and getting used to it as part of our routine has been an adjustment. But I can not even list all the benefits that have come from it!! We gained ideas of things to do to help Ellie and learned about grants to get some equipment/toys in the house. An unexpected blessing was our children seeing other kids with WAY more profound barriers to overcome than Ellie or any of us will ever experience. Humbling to say the least. Even at the therapy sessions, her three siblings rise up to show they truly are her greatest teachers. Note the attempted school work on the floor. Sometimes we really did get a lot done. Sometimes we played cards. A "low" to remember is actually the very first appointment we went to. We had not been back from vacation for long, none of us wanted to go do this, the evaluation appointments are only at 1:00 right when Ellie starts her nap. Somehow there was some kind of conflict turned brawl in the backseat over taking turns with the Kindle I let them play during the appointment. There was a struggle, maybe it got physical and some unhappy sounds filled the car. I found a vacant parking lot and pulled over. Every kid has seen their mom climb over seats, right? This happens every day, right?! Not very often for me luckily but...this was one of those days. By the time I got back there I had tears in my eyes they started crying too. We all realized this was just going to have to be our new life for now. Now that we've done it 3 months it's hard to even understand how that day could have been so hard but - the first day of any kind of "change" just messes with your head.
Luckily football started. The weekends were the times I spent hours and hours on the computer and luckily the kids and Jeff were happy to spend hours and hours in front of the t.v. :).
Julia turns 6! Her birthday is October 1, a lovely day of St. Therese of Lisieux the "Little Flower" which is just perfect for our own little Rose. It was a Thursday this year. Wednesday night, September 30th we decorated the house and wrapped presents and I worked on our application until about 11:00. I thought it was best to get some rest as I really wanted Julia to have a special day. (Jacob also had a birthday during all of this but the situation had not gotten to the intensity it was at this point after a final letter we got Sept. 16th and we had a pretty normal day on his birthday) I went to bed and could not fall asleep. For some reason (divine) I called on Ellie's great-grandmother...Eleanor. I asked her to help us. I asked her to take our situation to our Lord and help us figure it out. I asked her to give me peace and clarity. A few seconds went by and then I sat straight up. I flew out of the bedroom to Jeff who was still watching something and I told him "I've got it". I had experienced a moment of enlightenment. The forms have this place where you put "diagnoses" in order of importance. I had always put the health issues but now I saw things differently. It now had to be stuff related to her delays so we could get approval for the insurance to keep paying for therapies to help her gain independence versus just asking for coverage for her surgeries, etc. You just have to make the case why your child needs the coverage. We sat down on the computer, looked up diagnostic codes, reworded things, started over again when my writing was too messy and all of the sudden it was 2:30 a.m. Happy Birthday Julia. We shut everything down and by 3:00 I was able to lay still and fall asleep, thanking God and thanking Grandma. The forms were dated October 1 and we all loaded up that morning (this would have been a good day for me to start drinking coffee) and drove to the doctor's office. We dropped them off and went and had a lunch. Then the forms were ready at 3:00 so we drove back over there together and waited for the doctor to come out to the waiting room to make sure he did it all right. He's been so gracious and compassionate and willing to help. Jeff came to take the other kids and I finally got with him at 5:00. We discussed it all and felt good about it and I left. I got home in time to open presents, go out to eat and have a fun celebration.
Five days later I get a letter in the mail with a "technical denial" that we forgot to put "MD" after the doctor's name. You have 10 days to get it back in or you get a "final denial" which is what happened to us in August. I filled out all new forms, went back to the doctor and got it in the next day. That is where we are now.
Life lessons picked up in the past three months? The same ones I've had trouble with before. God tends to repeat main teaching points disguised differently along life's journey. Trust, faith, surrender. This situation felt different though because with the trust we had during her health crisis, there was truly nothing we could do - so much was out of our hands. With this, I felt like I just had to climb and climb until I got to the top of a mountain! During my climb it crossed my mind this might not work out (and it still might not, we'll see in a few days!) but it felt it was possible if I could just find the right tools. I stopped along the way of this difficult climb and set up a tent and had a good cry now and then. It's cold near the top of a mountain and I want things to go back to the way they were in the comfortable, lush valley of our summer!!! But I knew we had to get over this mountain and see what was on the other side. Right now we're at the peak - waiting for the answer. It's foggy and it's cold and it's very very quiet up here. But in a few days we'll start our journey down the other side and God will continue to give us a map on what the next step will be, whatever the outcome is.
