A couple weeks ago I had another "what has happened to my life" moment. My cousin has opened a new boutique. She is a fashionista of sorts. Very hip and stylish and wears designers I only read about. She recently opened her own boutique, called Max and Prissy. Needing some fresh air and desperate to get out of the house I decided to go check out her new store. There was a time when I would not leave the house without at least applying a little lip gloss and mascara but not anymore. I went up to visit my cousin's store in all my ragged glory - no makeup, hair disheveled, with all the boys - Timothy had dried blood running down his nose from banging it on the bed frame earlier and Wil had dried up yogurt on his face because he has an everlovinfit if I try to wipe it off and that day it just wasn't in me. And Luke was with me too, filthy cowboy boots and all. So here I go traipsing into this cool boutique with its hip sofa's, chair's and clothing displays. There is my cousin - looking all cutting edge along with her manager, also looking very cute and stylish. Now, I try to maintain some level of style but really I felt pretty darn UNHIP! And old. And wrinkly. And outdated. And boring.
So we descended on her store and I noted how very out of touch with up to date fashion I have become. I tried on a couple of cute pieces including a darling coat that I could not justify purchasing. Not only was it not within our budget but it wasn't practical for this mom of three small boys who just doesn't get out that much. I mean really, where would I wear such a cool, tweed, knee length coat? But it's fun to look right? So I replaced the clothes, peeled Luke off the floor where he had found a place to color, and loaded them back in my oh-so-cool minivan and declared myself officially "last season" as we headed home.
But first I got a Starbucks. At least I can have a Starbucks. As we drove home I looked in the rear view mirror at the boys laughing at each other and decided that I would take all my drabness for the madness that is my life. I don't think that being a mom means you have to give up on all the great styles that are out there but for me they have surely been redefined.
And my fun, surprise gift? The cool, tweed, knee length coat. I just love it. It was a gift from my mom, dad, and aunt Susan. Thanks you guys for keeping me hip and happeinin'!
Here is a picture of the coat. It surely doesn't do it justice. But Leah, I knew you would ask. :)and for those of you who are really bored and want a good look at the detail here are a couple more pics.
So if you are ever traveling through Columbia on I-20 make sure you get off on Clemson and visit Max and Prissy.
What you do not plan for is the phone call from your doctor asking you to come in to discuss some test results that are “a bit concerning,” or the uncomfortably quiet 20 week ultrasound followed by “we would like to do some follow-up testing,” or a premature birth that leads to a diagnosis that is a complete surprise to you. There are countless ways the news of a special needs child comes. For many it is on the heels of a very typical pregnancy and delivery, making it all the more shocking. It is never ever easy. It is not what you hoped for. No one I know prayed that the child they were carrying would come to them with medical or special needs. (though I must insert here that I now know many people that, having been blessed with such children, have gone on to pray that special needs kids would be placed in their home through adoption – amazing!)
Yet here you are. The day you have been planning for has arrived, though it is not at all what you thought it would be. There is medical jargon flying around, your baby has been whisked off to another room for testing, the air feels thick around you. You hear the sounds of laughter and joy in the rooms around you but there are no congratulations being offered in your room. Why does it feel more like a funeral than a birth? Every time a doctor comes in the room they bring more news. It may or may not clarify things for you.
For my husband and me the initial adjustment was to NICU. Our second son spent the first month of his life there. We did not get a diagnosis right away; that took some time. What we did know was that many of his numbers were not what they should be and those things needed to be investigated. As a result we could not hold him, our older son who was 2.5 at the time could not visit him, and we had to go home without our baby. That is when our new reality began. By the time our son left the hospital weeks later we had an official diagnosis of Trisomy 21 (Down syndrome) and Congenital Heart Failure as a result of three heart defects that would require open heart surgery at five months of age.
*Thanks Holli for making a difference for families who don't start off in the typical manner!
The oldest man in the world with Down's syndrome has died aged 68. Doctors didn't expect Peter Davison to live past 14, but he went on to have a long, healthy life and was even awarded the title of "Oldest man with Down's syndrome living" by Guinness World Records. He died peacefully on December 12 surrounded by friends and family at Barnes Court Nursing Home in Wycliffe Road, High Barnes, Sunderland.
Today his devoted big brother Alf paid tribute to a man who "showed others what people with Down's syndrome could achieve". Alf, 76, said: "Everyone was really proud of Peter. When he was born handicapped children tended to be hidden away, but that was never the case with Peter. "My parents made sure he had his independence, and everyone knew him in the area. He was always smiling and was a proper little character."
Alf cared for Peter at the family home in Midmoor Road, Pallion, for 27 years after the death of their parents, Joe and Della. A keen knitter, rug-maker and puzzle-solver, Peter was always active and attended the Fulwell Training Centre for 40 years. One of Alf's proudest moments was in May when Peter, then aged 67, was recognised by Guinness as the oldest living man with Down's syndrome. He went on to extend the record by 215 days. In the last 12 months Peter's health had deteriorated as he developed dementia and Alf had to do everything for his brother – but he wouldn't have had it any other way. The former driver for the Little Sisters of the Poor said: "I wanted him to stay in the house he knew. He was very intelligent. His speech wasn't very good but I knew exactly what he meant."
On July 31 this year, Peter's health took a turn for the worse and he was admitted to hospital with a urinary blockage. This led to other complications and over the next few weeks he was in and out of temporary respite homes, as his condition was too severe for Alf to look after him. During this time he contracted MRSA and was unable to use his legs. Eventually he was admitted to Barnes Court Nursing Home where he spent h is final few weeks before he died from bronchial pneumonia and a heart attack. Brothers Joseph, 80, Alf and sister Maureen, 71, were by his side. Alf said: "We would visit him every day, so it was some comfort that we were there when he died. He didn't suffer." Neighbour Marie Wood also paid tribute to Peter and says he will be sadly missed in the area. She said: "He was a gorgeous man who was always friendly and smiling. He used to say that my seven-year-old son Jay was his best friend and Jay would make him cards and go round and watch TV with him. He will be a big miss in the neighbourhood." Alf said: "I just want to thank everybody who helped Peter on his last journey: Barnes Court, the Carers' Centre and Doctor Wilderman. All the neighbours have been marvellous as well."
I often have Wil and T hang out in my room in the morning while I am getting ready. I have learned the hard way that it is the only way to keep them out of trouble. They keep themselves busy while I shower and get ready for the day by emptying all bathroom drawers within reach and placing everything in the garden tub, pulling clothes out of drawers, rearranging the shoes in our closet, clearing our bedside tables, removing books from shelves and well, you get the picture. This morning when I got out of the shower I found everything as disastrous as usual with T sitting in the middle of it all but Wil was quiet. After a quick search I found him in the closet. Hiding! He was definitely hiding because when I rounded the corner he looked over and broke out into a big grin and giggled like he had really fooled me. He was also pretty pleased that he had found such a great perch on dad's shoe rack.
8. You don't ever buy a toy without thinking about it's therapuetic value.
9. Insurance companies won't touch your child with a ten foot pole.
10. But that's okay because you find there are good programs out there to help out.
11. You know which ER's to avoid.
12. You have your doctor's private number.
13. Under no circumstances do you cancel an appointment with a specialist.
14. You live with a mild physical and emotional weariness.
15. You could take up part time work as a PT, OT, SLP (okay, not really, but it feels like it).
16. You can't believe your pride when the smallest of milestone's are met.
17. You can't believe your amazing good fortune that God brought this child into your family.
Timothy has also picked up all of Wil's sign language, which is great, though he is seemingly uninterested in trying out verbal communication. Unless it involves guttural squeals.
Timothy and Wil are great buddies. For now, Wil is being looked up to as big brother. He is being admired by Timothy. He is being mimicked throughout the day, it is really sweet. I know that one day that will stop. I know that one day Timothy will grow into his own skin, he will stop wanting to be like his big brother and Wil's place in the family may shift. One day it is going to be Wil trying to keep up with T, so for now I am going to enjoy the dynamic and the fact that I am getting some forced exercise with 28 lbs in each arm.
What is it you ask? why it is a vase filled with cranberries crammed with woody branches. I made it as a centerpiece for a church function last night. It worked quite well. Is that the best you can come up with for your substitute tree you ask? Yes. Yes it is.
You see, I'm tired. I know. You are tired of hearing me say that I am tired. But it's true all the same. And here we are at the end of another round of rotavirus for Wil. It's been a bad week for him. And he ended with a bang today. He got it all out (do ya know what I mean? he cleared those bowels big time - it musta felt good!) this morning in our front room. I was upstairs changing Timothy's poopy diaper when Luke started screaming ( he is mildly dramatic) that Wil had stinky everywhere. Yup! James got him upstairs to the tub while I finished with T. I then finished up with Wil so James could get to work. I dashed downstairs to gather our things only to find poop everywhere. On the rug, on the sofa, on the books. All discovered as we were loading up to take Luke to pre-school. I couldn't just leave it because that is Wil's "therapy" room and his PT would be arriving shortly after we returned. Fun times. Here is Wil's pitiful self the past few days.
Luke has been keeping himself, and us, entertained by drawing on his socks and providing puppet shows.
And speaking of Luke. He does have some concerns about the "tree." "What if Santa doesn't know what it is?" * "Santa won't know exactly where to leave the presents." * "What if the cranberries go bad?" (good point - I will change those my bright young child) Of course, two days ago Luke came to me and exclaimed, " I don't think that Santa is real." "Oh no?" I say. "No, I just don't think there could be such a person, you know doing all that stuff in one night." "uh, huh, did you talk about that with someone?" I ask "No, I was just thinking it," he shrugged.
Ahhh. . . more good news just came by phone. Our beloved jeep that has been in and out of the shop for the last few weeks must go to the vehicular graveyard. sigh.
So back to the "tree" - yeah - that's the best I can do this year. Sorry kids. :)
pastor j's blog
our church plant
- ► 2010 (35)
- ► 2009 (82)
- ► 2008 (143)
- Fun Gifts
- An Inspiration
- Just for Fun
- MyHeritage: Celebrity Collage - Vintage photograp...
- MyHeritage: Family trees - Genealogy - Celebritie...
- The Diagnosis
- At 68, Oldest Man (on record) with Down Syndrome D...
- Words and Games
- Special Needs
- Boys, Gas, and Roughousing
- In My Own Time
- Our Christmas Tree Solution (warning, it's lame)
- ▼ December (12)