Feasting in Feasterville

We are still basking in the enjoyment of our whirlwind trip back East. I wrote about our two days in New York, but the focus of our trip was a wedding in Feasterville PA.

 Manhattan and Feasterville could not be more different, so it was like two separate trips. Both great, I might add.

I doubt I could or would have made this trip at all if not for the wedding. We received the save the date card months ago. Since it was  a wedding the date was not going to change and that gave me the focus and the time to consider going, make the arrangements and actually get on the plane. And I'm so glad we did!

When you attend a wedding 3000 miles from home and you don't really know anyone and still have a blast, that's a great wedding. Janine, the bride, is the daughter of Steve's client and friend Joyce. I've actually only met both Janine and Joyce once before though we've communicated on the phone and by email often and I had never met Paul, the father of the bride or Mike, the groom. Didn't matter. We were treated like family from the outset and included in lots of festivities. 


When we arrived at our hotel there was a gift basket waiting for us. It was full of cookies and treats, kleenex and sundries etc. I thought that was so sweet and figured everyone staying at the hotel received one until I saw THIS shirt for Maggie in the back of the basket and realized this was done specifically for us. Maggie loves it!

The wedding itself was beautiful. Janine and Mike have been together a long time and the love and support in both the church and the reception was palpable. They are good people who love  their families, friends, community and  each other and the joy was infectious.

Janine is a special ed teacher (I told you she was cool) and had these key chains at each place. They were made by a group of students in an  Autism class taught by her friend.  In lieu of any wedding favor, the bride and groom made donations to Autism Cares and Special Olympics.

Are you starting to see why I love these people?

I hope Janine and Mike have a wonderful life together. If even a a fraction of the love and support we witnessed at the wedding continues to surround them, they will be set. And it will because of the people they are.

T minus 45 hours

We are getting on a plane on Wednesday morning and flying across the country. And by "we" I mean Steve and me . Alone. Together. Maggie is staying here.  I have been working on the logistics of this for months and I think it's all in place. I won't know for sure unless something goes wrong. I have not slept in days and don't expect to for another week.

I received approval for five additional nursing shifts, though I have YET to see that in writing (and I've asked 5 times.) With great difficulty, I arranged for nurses to cover every shift even though one cancelled a shift just last week. I found a replacement.. The nurses all have their schedules and the relevant phone numbers. They all know they CANNOT cancel. I have a net in place if something doesn't work out with the nurses. There are holes in that net, but I have an emergency backup plan.  Tim is here. Dr. Aicardi, our wonderful pediatrician, is on alert and will help in whatever way is necessary. My mother and my siblings know and some will stop by and say hello to Maggie. Every single bit of laundry will be done. The oxygen man is coming today. I am bringing supplies upstairs to the dining room so that the nurses don't have to go searching for anything. I have prepared a medical folder with copies of the insurance cards and all Maggie's medical history in a file on the dining room table.  I am packed. I am ready. I am excited and I am beyond nervous. 


Vacations are so relaxing.

Sleepless in San Francisco

Very little sleep for me last night. I went to bed and fell asleep fairly quickly, but I woke up about 2 in a panic and never really went back to sleep after that. Why the panic? Was there a problem with Maggie? No. Did the nurse take ill? No. Were there burglars, raccoons, skunks or other invaders? no no and no. I was imagining everything that could go wrong when Steve and I go out of town later this month. I knew the worry would hit sooner or later and I'm glad it took so long to arrive, but it's here now. 


Travel has been out of the picture for us for some time. Taking Maggie with us is unthinkable and leaving her behind is a logistical nightmare. We took a couple of trips when Maggie was little and we could carry her with ease and change her diaper without causing a public spectacle. Now she's bigger and has the trach and requires constant care. Taking our show on the road is not manageable, enjoyable or the least bit relaxing for any of us. Leaving Maggie behind requires an incredible amount of planning and scheduling of nurses, visitors etc so that Maggie is not completely bored while we are gone. It is expensive because we have to pay for the extra nursing shift out of pocket in addition to whatever travel expenses there are. It is easier to stay home and that's what we do. 


But every once in a while, you just have to make plans and go. In the 18.5 years of Maggie's life, we have gone away for a single night together twice. Last year we threw caution to the wind and went for two nights for our 25th anniversary. We were just up the coast and could drive home in 3 hours if necessary - and it almost was. One of the nurses was hospitalized and I spent about 4 hours of our 48 hour getaway frantically calling every nurse on the list to get a replacement. I managed to pull it off, but only because one of the nurses took pity on us. 

This year we are going for it. We are actually boarding a plane and heading to New York City and then to Philadelphia to attend a wedding. Steve and I have not been on an airplane alone together since 1989. That is 23 years ago - before the existence of Homeland Security or the TSA. You could bound onto the plane with shoes intact. I think it's time we tried this. We will be gone four nights and five days. I am really looking forward to it and I am  scared out of my wits at the same time. 


I have spent the last month or so working on this. I asked for and received approval for the cost of the additional nursing hours, so the cost is just the travel. I have been working on scheduling nurses with the admonition that they cannot cancel or get sick. The first layer of coverage is in place and now I have to work on a safety net - or an "on call" layer in case a nurse gets sick or injured.  I have to lay in supplies and medications and make sure Maggie gets out a little bit while we are gone. Tim will be here, and he will be a huge help keeping Maggie happy, but we will NOT be able to turn around and come home if something happens. 

Nothing will happen. Nothing will happen, Nothing will happen. Nothing will happen. 


I don't think sleep is in the cards for July.