Wednesday, November 24, 2010


Time to make gingerbread cookies; a Thanksgiving tradition
This child's apron was made by my Grandma; very special indeed

The "oh so yummy" ingredients for Pumpkin pies

On a hike.... my dad and Grandma in the background.

My mom was (and still is) amazing at making Holiday times special and fun when I was growing up with my three younger sisters. We made crafts, baked, decorated, and had so many fun times as a family. I remember every Thanksgiving she would give us a sheet of paper and a pencil and tell us to write down everything we were thankful for. Of course we used to grumble but now looking back I see a huge significance in her having us do that task year after year. I have had SO much to be thankful for in my life. Don't get me wrong; I love to eat and savor the rich flavors of a Thanksgiving feast shared with family. Yet I also think it's important to reflect on the year and how fortunate I really am in so many ways. I hope to pass the "thankful list" tradition on to my children.
For some quick updates; the twins, Wayne and I will be visiting an animal rescue center this weekend and adopting a new member to our family. Wayne's brother was in the hospital a few weeks ago and we took care of his dog Sheba. Long story short; we really miss having a four legged critter in our home. The owner of Joyful Rescues has been wonderful and is working with us to pick out the right dog for our family. Wayne has always wanted a dog and I can't even express how excited he is!!! Finally for his 35th Christmas he is getting the pet he always wanted :-)
Monday morning I returned to the Elizabeth Wende Breast clinic for some further duct testing and imaging. It was an interesting experience sitting in a waiting room clad in a tie front hospital gown. Of course the gown opens at just the right angle to expose my long chest scar. I can't help but to notice women staring like, " what the hell have you been through here".... of course my scar was for my heart and my breasts are unscarred..... at least for the moment. All the imaging showed the original papilloma and several more further into the ducts. Most likely these are benign inter-ductal papilloma's but since there are so many and apparently I am younger than the typical age range for doctor wants them to be removed and tested. The chances are low; but I can't help but to worry. I asked if they could do the surgery at the clinic but since several incisions will most likely be made; they referred me to another surgeon. I feel so fortunate and thankful for my good health so far and hopefully this will be a benign condition.
So as we draw closer to Thanksgiving I am counting my blessings even when jumping over some minor hurdles. Tomorrow will be spent with my amazing family.... good food, fellowship, and good health... I couldn't ask for more. I am thankful.

Wednesday, November 17, 2010

A horse ride and a Furry Visitor

What a week its been for the Beyers family. We have been battling colds/coughs on and off but are still having quite the eventful time. This weekend William had his first horse ride thanks to Flower City Down Syndrome Network and Never Say Never Stables in Webster. I rode with William on a huge and beautiful horse. William was annoyed with the helmet that was falling into his face but very attentive and alert. After the ride he was awake until 10 at night!!! He was so alert! Amazing; I think I will look into riding more often with him. My little cowgirl Ella also enjoyed a few rides.

In addition to our adventure with horses we also have a furry visitor this week. Wayne's brother is in the hospital so we have temporarily adopted his puppy Sheba. She is having a wonderful time at our house. William loves to pet her and Ella has been playing fetch with her non-stop. Wheww this dog has energy! My cat is understandably terrified and slept with me all night long!! We are keeping the two separated... :-)

Wow, what a week its been!!

This hallway is our kitchen including the tiny eating area; it's looking a little more crowded now....
Ella showing off her belly to her new friend...
Someone is a little camera shy.... but thinks mommy needs to give her more food ;-)

Friday, November 12, 2010

The Truth.... Update on Last post

In my last post I wrote about William starting the Ketogenic diet for seizure control. We finally received a date for his hospitalization; December 6-10th. I debated about putting the start date off until after the Holidays but finally decided the sooner the better. Unfortunately his Holiday will not include any sweets... poor Will. No sweets and very minimal carbs but lots of love and kisses and hopefully less seizures. Hopefully more alert time as well.

As for my breasts... (I think mostly females read this blog; but if you are a male...sorry) the concern my doctor and I had over a lump turned out to be nothing major. I spent over four hours in a local breast clinic getting many mammogram pictures and a ductogram. Anyway, I have to go back for another test in a week but it's nothing too concerning. I will not go into anymore details. So as I recently told a friend; back to worrying about my children and not myself..LOL

I recently emailed some parents from the Lissencephaly loop about some of my concerns for William's development. The people I have connected with through the loop have been such a huge support to me even though I have not met any of them in person (yet). This is the part of my blog post where I am going to be bluntly honest; there are so many challenges in raising a child with severe disabilities. William has my heart.... there is no one I love more than he and Ella. He is a beautiful and sweet boy; who I love to be with. Yet most days I feel a sadness that I have to overcome. Everyday I grieve that my son is not able to roll, sit, walk, talk, eat without choking and aspirating, grasp objects, see well, laugh, or even be comfortable and at peace without seizures.

Today my sister Katie and I brought the twins to a playground; it was a beautiful Fall day. Ella found a little friend to chase around. After the boy left she came up to me nearly in tears and said, " why did he leave.. I need a boy to play with." This said by a girl who has a twin brother.... My heart aches. It F*&^ ing aches and I hate it. William should be the one running around and laughing with her. I take a deep breath and do what I can... I push William in his jogger and we chase after her, I put his tomato seat into swings and bouncy cars ... but he is getting too heavy to carry around.

That being said (judge me as you will....) I work so hard with my son and grieve that he is still at a 6 month level. Especially now that he is in the pre-school system; where he is being compared to his typical peers and expected to meet goals and objectives that are so hard for him to attain. It's so hard to see my son struggle with basic things others do so easily. I will continue to work hard EVERYDAY being his mom/therapist but at the end of the day I only want to hold him close to me... cover him with kisses and whisper, " I love you so much just as you are." And I do... but it breaks my heart.... everyday.

Autumn Love

A very tired Sheriff Woody....
The Joy of pumpkin guts...
Enjoying a nice Fall day....
William listening for Thomas's whistle...
Soft bunnies and pony rides at Bristol Garden Center