A month in Pictures

William in his gait trainer... this was taken a few months ago.. he has had a rough patch but is now getting back into it.
Sleeping beauty.... in mommy and daddy's bed; a habit we need to break...
Very serious about drumming... Benny Greb style
Daddy and Ella having lunch with Grandma and Grandpa after her concert....
My handsome William
" Mommy I am hungry; just feed me already"
Ella sings on stage with her class.... she is in the pink dress with boots (her idea)!!


William in his sweet ride .... snoozing...
My loves together....

Rain

This evening I was bent over my garden planting the first batch of Annuals; bare knees plunged into the soil. William was propped up in his gait trainer.....legs dangling and head bowed. Gentle warm drops of rain began to fall on us. As I tilted my head back to catch a drop I noticed my son doing the same; letting the rain trickle to his chin. He smiled and something in me sparked; I was transported....

(remembering)

nights in college, breaking from studying and walking in the rain. Alone or with someone but always feeling so fresh, alert, and invigorated.

and now...... I sometimes feel that I am trapped on auto pilot; have I become comfortably numb? Although I love being a mother and watching my children grow and experience new things.........I need to feel alive and to see the beauty I used to see. I have become so busy, so sleep deprived, so worried, so so so so so ... that I sometimes fail to enjoy the simple things in life. To plant flowers in the rain and feel

refreshed

awakened

invigorated

more than just...

to survive

but to truly

Live

Very Busy Teething here in the Beyers house

A rare smile between bouts of screaming.
William getting his second year molars means increased seizures and all around irritableness. Here he is showing off his mouth full of teeth....

Just watching the birds

Hungry chickadee at Mendon ponds park.
Watching for birds....

Refuge for injured birds called Wild Wings at Mendon ponds park.

Our family recently had a nice adventure at Mendon ponds park feeding chickadee's and checking out the birds at the Wild Wings sanctuary. Wild Wings houses and cares for over 20 permanently injured birds of prey. Such beautiful birds!! Right now they are also caring for a bobcat that someone had cruelly caught and declawed to sell in the black market animal trade. The entire facility (which is small) is stroller friendly; perfect for everyone!! Our favorite was a little owl but he looked scared so I did not take a picture. To learn more about these birds visit

http://www.wildwingsinc.org/

Its almost March!!!

February

It's been one of those weeks that make me feel like screaming and then screaming some more. Did I say week? I meant one of those months.... I should title this post " I HATE FEBRUARY". Dear Grey and dreary February, f-off and take Valentines Day with you. I am just reminded how lonely I feel sometimes and how much I miss sunshine and that the overly marketed diamonds and roses will NOT make it all better. But maybe dark chocolate and dark beer......... ;-)

SO now I feel better after getting that off my chest. I promise no more angry ranting on this post just a few random stories from February....

Strangers

For about a month Ella greeted Wayne after work with the mournful statement, " Will's balloon blew away." Apparently watching a balloon float away is traumatic for a two year old. So one day the twins and I were at wegmans in search of a snazzy new replacement balloon to make the world "right again" in my daughters eyes. We finally found the perfect heart shaped balloons; red and silver with glitter to catch William's eye. Mission accomplished...... accept for the super chatty cashier that was eyeing William in such a way that I knew questions were coming. I try to be an advocate for my son so that people might understand disabilities better but on this day, on our balloon search, I just was not in the mood. Regardless of my mood; the questions came.

Cashier- " wow, I have never seen a seat like that before" (he was in his special tomato chair). He sure is sleepy....... it's not a usual nap time."

I quickly explained that the chair was from a specialty catalog for kids who had low muscle tone and could not sit up on their own.

Cashier -" Well, he does walk right?? "

Me- "No"

Cashier-" But does he at least talk?"..............

Me- "no, but he does communicate with body language and other vocalizations."

Cashier-" oh, well...... will he ever talk or walk......what will he be able to do?"

Me- " I don't know but he is healthy and content most of the time."

Cashier- " Well, you know my daughter had delays and received early intervention services. She is "OK" now but my family always accused me of being on drugs while I was pregnant."

Me- " that must have been offensive. Sometimes we have no control over what happens even though we are healthy during our pregnancies."

She smiled and wished us luck. I grabbed the balloons and escaped to my car where I could be alone and not answer questions that I don't know the answers to. I still think about her though. Complete strangers asking ourselves the same questions; what happened and why . So, in May Wayne and I are going to pursue further genetic testing...... maybe we will actually have some answers. Wish us luck.....

...............................................

My favorite post office is a quaint little place in Fishers on the way to my parents home. The building is quiet and there is usually no line. This week I was stuck behind a man who apparently had a lot to mail. So while waiting I spotted a worn little newspaper clipping hung on the wall that said, " talk to those you are in line with" so I did just that. I found out that he has three boys who are teens and "oh, how quickly they grow up." We made small talk about our kids and then as he was about to leave he said,

" Well, I can see you have healthy kids and that is all that matters .... you are lucky."

Part of me wanted to retaliate and tell this stranger,

"you have no idea... my son is very delayed ..... don't tell me what matters."

Yet, on the drive home I began thinking how right he was. My children are alive, healthy, happy and that really is what matters. I am indeed very lucky to have them in my life. William may be delayed but I love him regardless of what his abilities may be.

Now a few days have passed and I am feeling angry and bitter that William requires a level of care much like an infant. That he can't move himself and I have to reposition him so often through out the day that my body aches. That feeding him takes 45 minutes to an hour and he wants to eat every three hours. I want to shout, "this is NOT ok..... it's not ok for a little boy to not be able to move himself or feed himself." I feel such hot and intense anger until I remind myself of that conversation with the stranger in the post office. That William is healthy and at home. We have a special kind of love and I CAN do this and so the pity party ends.

Thats all for now.

and then he bit me.......

William and I were not seeing eye to eye today and when push came to shove..... he bit me. Usually I pick him up and carry him with his face by my shoulder; he nuzzles and kisses me and we get along just fine. Today, for the very first time, he nuzzled into that spot right between my neck and shoulder and took a little bite. I was taken completely by surprise but knew exactly why he did it. All morning I had been cranky, lacking patience, and in general just miserable to be around. I spoke harshly to him when he did not deserve it. The poor boy has been teething for weeks and mad as hell about it. He had finally had enough and he was going to tell me all about it......by taking a bite out of me.! So we made a truce; I stopped snapping at him and he stopped bitting me and the day passed by a little more smoothly. ;-)

Happy New Year

The first photo of 2010- Ella with her frosty.....
The twins and I were very happy to spend lots of time with Aunt Ame who was visiting from Colorado..........
William practices in his new gait trainer called the Pony!!!

It's back to our "everyday life" now that the Holiday season is over and the last of the visiting relatives have left town. It was wonderful to see my sister and cousin visiting from out of town and to spend time with family. Already I miss them. Yet I feel a sense of calm now that the Holidays are over and I am actually eager to settle back into our normal routine. I am content to be alone for a few hours a day. In fact I am that type of person who needs my alone time; for reflection and quiet. I need alone time just as much as I enjoy being with people. Its all about balance which of course is much harder while raising children :-)

The past few months have been difficult for me emotionally for various reasons. Wayne and I took a much needed break in late December to celebrate our 6th wedding anniversary. The twins stayed with their fantastic Grandma!! (Thank you Mom ! ) During that trip I was able to sort of recollect myself and have some alone time in the beautiful Adirondack mountains. Uninterrupted alone time with Wayne was also very nice. We did some skiing and ate lots of hot meals in cozy pubs. My favorite pub, in lake placid, had beautiful stained glass windows and a huge cobblestone fireplace. I could have stayed there for hours warming by the fire and drinking Ubu, lake placids very own rich and tasty beer.

When Wayne and I returned home Christmas was upon us and William was sick. We had to take him to the emergency room the day after Christmas for illness and alarming seizures. As always it was scary and stressful going to the ED but everything turned out alright. So needless to say it has taken me another week or so to get back to "normal". William is doing well but seems to be fighting off yet another cold.

So as for making New Years resolutions; I am determined to be stronger emotionally and physically. I have started a workout plan to build muscle and keep myself strong to lift William and hopefully getting into better shape will also help with emotional well being. Hopefully....

Cheers to a happy and healthy new year my fellow bloggers :-) Be strong.