Tuesday, December 28, 2010


I have been on the hunt for shoes.  Unfortunately, not for myself, for Evan.  He got his very first pair of AFO's last week and will be getting his stander in just one more short week.  This is going to be a big event for us.  So, he is need of his very first pair of shoes before next week.  I feel like I have been all over town looking.  I know that we need a wide shoe, which is not an easy thing to find.  Tonight I decided to hit the mall and tackle multiple stores in our hunt for shoes.

At the first store we were at, the nice sales lady said "what happened that he has braces on?'"  I am ashamed to admit that my response was "oh, he was a preemie, and has some issues."   He was a preemie, but what was I thinking.  After leaving the store, without any shoes, I was angry with myself.  My son has Spina Bifida.  That was the correct answer.  I have no idea why I wasn't honest.  It's nothing to be ashamed of.  I felt the need to rectify myself and wated to tell the world.  The next person to ask would get the whole story. We walked into the next store and the young kid didn't even blink when I told him I need a wide shoe to fit over my son's braces.  He pulls down some Jordan's and says, this tends to be a great shoe and we sell a ton of the to kids with braces.  I wanted him to ask what was wrong, why the braces, but he didn't.  He treated us exactly like every other customer in the store. Why shouldn't he, we were there to buy shoes just like every other family.   Sadly, the Jordans didn't work with Evan's braces, which maybe was for the better.  Probably not the best thing to give a kid Jordans for his very first pair of shoes, it might set a precedence.

I am proud to say that although my conscious didn't come out on top, we did finally find shoes.  Size 4 Wide at Payless on Clearance for $4.00. 

Sunday, December 26, 2010

Looking to a New Year

I must admit we are not the most religious family.  Christmas doesn't have the meaning to us that it does to others.  Ok, I'm Jewish, so of course it doesn't have the meaning to me that it does to so many others.  That doesn't take away the fact that it's still a special day.  To me it's a day for family. To show love, to receive love.  I wasn't in the holiday spirit this year. Too much going on.  Christmas and the shopping and running around and being cheerful was just one more thing.  I couldn't do it.  Evan being in the hospital last week didn't help. But today, today I finally feel a sense of peace.  Maybe it's the fact that the year is winding down and I am looking forward to the new year.

A new year holds so many possibilities.  So much that is just waiting to happen.  I have such hope in my heart that this is going to be a year to remember.  The year that Evan will stand on his own, maybe even take a step or two...The possibilities are endless. 

2010 was not a bad year.  In fact quite a few good things happened.  After losing my job shortly after Evan was born, I was absolutely devastated. I was angry and felt hopeless.  Instead, it became one of the best things to happen. I got a new job.  I was lucky, I am lucky  I actually love my job.  I realize I am lucky to say that.  Not many people like their jobs, much less actually love it.  I love that I make a difference in peoples lives.  I love the people that I work with.  I love that I have their support when Evans needs require me to miss work.

We moved to a new house this year, that I love.  It just feels like home.  It's warm and comfortable.  It's home. 

For the most part as I reflect back, there were more good days than bad. I think like many of us when we are in the midst of hard times it's all we can see.  Little things that would ordinarily be passed over, feel like huge burdens to carry on our shoulders.  I have hope for a year that holds happiness and health for our family.  I suppose that whatever is in store we can handle.  We are a family, a strong family and as long as we are together we can make it.

Tuesday, December 21, 2010


Lately I have been struggling to keep it all together.  There are days  (or weeks) where it is all just too much.?  The last few months have taken their toll on me.  I am trying to just keep my head above water.  I know that some days are going to be harder than others, unfortunately we have had a seriers of hard days recently.  Many of my fellow Spina Bifida mothers are posting this on their blogs and throughout Facebook.  It is just the reminder I need to slow down and take a deep breath

The Ten Commandments for Parents of Special Children

1.Take one day at a time, and take that day positively. You don't have control over the future, but you do have control over today.

2.Never under estimate your child's potential. Allow him, expect him to develop to the best of his abilities.

3.Find and allow positive mentors, parents and professionals, who can share with you their positive experiences, advice, and support.

4.Provide and be involved in the most appropriate educational and learning environments for your child from infancy on.

5.Keep in mind the feelings and needs of your spouse and other children in the family. Remind them that this child does not get more your love just because they get more of your time.

6.Answer only to your conscience, then you will be able to answer to your child. You need not justify your actions to your friends or the public.

7.Be honest with your feelings. You can't be super parent 24 hours a day. Allow yourself jealousy, anger, pity. frustration, and depression in small amounts when necessary.

8.Be kind to yourself. Don't focus continually on what needs to be done. Remember to look at what you have accomplished!

9.Stop and smell the roses. Take advantage of the fact that you have gained special appreciation for the little miracles in life that others take for granted.

10.Keep and use your sense of humor. Cracking up with laughter can keep you from cracking up from stress.

Author Unknown.

Sunday, December 19, 2010


Evan has been in the hospital for six days now and no going home date has yet been decided.  This is one of the hardest parts of having a child with a disability or sickness. Being at the mercy of other peoples decisions.  Waiting for answers.  Waiting for the word that you get to go home.

For this hospitalization, we were given the option of when to come in.  How do you make that kind of decision?  It's never convenient.  It's hard to miss work.   It's hard to let mundane house hold responsibilities fall by the way side.  I had to make a conscious decision to miss my daughters school holiday program and my moms graduation for her Masters Degree. After coming to the hospital we found out that other children are not being allowed as visitors due to the flu season.  That meant Lauren would not be able to visit her brother.  It meant my time with her would be limited. I feel guilty.  I feel torn.

I get resentful that while we are in the hospital other peoples lives go on, while ours is on hold.  Others complain about the stress in their lives and it makes me angry. It's selfish, I know.  There are others who have it way worse than we do.  No one knows the struggles in others lives, but this is ours. 

I know that there are more hospitalizations and surgeries ahead for Evan.  I'm not sure it's ever something you ever get good at, but perhaps time makes it easier.

Tuesday, December 14, 2010

The Start of Something New

I have been contemplating starting a blog for a while now. I decided now was the time. I had a blog when Lauren was younger, but was never really dedicated to it.  I want to commit myself to this. I want to tell the story we have lived and the stories that are still unwritten.

I am hoping for an outlet and for a way to encourage others who are going through similar struggles.  I know that we are blessed for the life we have, but some days it's hard to see.