Monday, June 30, 2014


Last night we were on our way home from Mike and Jenn's wedding.... Congratulations to my brother-in-law and sister-in-law; my head was pounding. Migraines, painful and getting them when there is nothing you can do about it, sucks. So I went into the back seat of the van to lay down, putting my arm over my eyes; my thoughts started, imagine having the headache, not being able to lay down,  not being able to put my arm over my eyes... That is Ian everyday with everything he feels, needs, wants...there have been times when I have tried to lay down and not do anything, thinking what it would be like to need someone to come help me with everything, to do everything for me.  Most of the time I can't imagine, thinking that Ian knows what it is like to do for himself... Wondering what goes through his mind... I can't.

I think of a quote from a book I recently read which I jotted down because it struck me...

Hope, even in our darkest moments it is there. And in all its tenderness and beauty even if hard to see sometimes it is lifes greatest gift. The gift of hope a precious gift to share. The gift of hope passes from hand to hand like a baton, we are all in this together. Meeting the needs of others is humbling and I think Albert Einstein had it right when he said the only life worth living is a life lived in service to others.

Tuesday, June 24, 2014


This is a hard one to write,  sometimes even think about... But I am scared. Scared of the future, what it will be like without my baby boy,  my superboy.  I'm scared for Becca, Brian,  our extended family, me,  the list could go on.  I know the inevitable will happen, just not when.  It could happen in a second, all it could take is one plug or it could continue slowly over time robbing his ability to do what little he still can. Ian is doing well at this time, we are seeing small signs of disease progression; I wanted to make sure everyone knows this. Over the past few months we have seen upper body muscle spasms,  him having a harder time saying his "s",  every once in a while taking naps during the day.  Overall, he is doing well.

Over the years, Ian story has gotten out there. We have worked hard for that,  not wanting another family to go thru what we have to get a diagnosis. Education about PCH1A (VRK1) is so important to us. Letting others know this disease is out there, maybe someone will read our story and know someone else who sounds like Ian.  The unknown was horrible, while knowing is also horrible but still better. Typing that last sentence does not really make sense yet it does, knowing Ian's diagnosis is horrible because the diagnosis is horrible,  the unknown of what each day will bring,  but isn't that the same for everyone.  It is but in our case it is still a little different...

As Ian's story has gotten out there, the support has been unbelievable. The words from others... "you are an inspiration", " your family is amazing",  "xo",
" Your blog post updates inspire me constantly. You are one hell of a woman and you have one heck of a family. " I am sharing these comments because to me I am not these things,  my family is not these things.  We are just a family who was dealt a shitty hand trying to make the best of it.  Brian and I are taking care of our kids the best way we can.  We are trying to raise Becca to find the positive side of every situation, because if you look hard enough there is one. I don't want any of us,  especially Becca,  Brian and myself to have regrets when Ian is gone. Thank you all for the first continued support,  for being a part of our village and for sharing our story.

I am scared...

Monday, June 23, 2014

The Huffington Post

Not enough words or ways to say thank you to Mark Brodinsky for sharing Ian's story as the 1st Sunday I said at the time with Mark, it is all about education, getting it out there...letting people know...well thank you again Mark and the Huffington Post...

Enjoy the read...

Wednesday, June 18, 2014

Thanks To The Men In Blue (Brian)

Last week, I know I’m lazy in getting this posted, yet another amazing event happened for Ian that will just add to the many wonderful memories we have been building together.  Thanks to the effort by our good friend Tzvi Haber, of Chai Lifeline, he was somehow someway able to convince the Baltimore County Police Department to allow us to bring Ian to a training session for the Motor Squad.  As you know from a previous post, there was another motorcycle ride organized for Ian by the Lonsmen MC, whom we are still very much in awe with, where originally Tzvi actually wanted to have the group escorted by the police.  However, due to liability issues that was not allowed.  So the next best thing was arranged, attending a short training session out in Sykesville. 

So Wednesday, June 11, we met with an officer at the Reisterstown precinct and followed him out to the training facility.  Upon arriving, we had to follow another gentleman to the driving course where we would be watching the motorcycles.  As we were getting closer, we see two officers on motorcycles drive past us, turn around and actually escort us to the course itself.  

Police escort to driving course upon arrival

Once we got to the course we see the other officers standing in front of their motorcycles at attention as if we are dignitaries or something like that.

Ian and Becca with BCPD Motor Squad.
After brief introductions and some generous gifts from the department, even a REAL police motorcycle helmet, it was time to meet the K-9 unit.  I do not know who was more excited…Ian, Becca or myself.  I love dogs and always wanted to meet a K-9 unit dog.  There’s always that fear and stigma that these animals are non-approachable because of their training.  Well that used to be the way but according to the K-9 unit officer, they changed that so newly trained dogs can and will interact with the public.  He did also say there are a number of dogs that you still cannot approach.  Below is a picture of Ace, the K-9 unit dog we met that day.  If you were to meet this dog on the street while he was being walked you would never ever think he is a trained killer with one simple command.  Ace is a 3 year old Dutch German Shepard who acted every bit the puppy.  He couldn’t get close enough and stay calm enough to show us what he could do.  But his handler was able to get him to sit next to Ian without moving a muscle for a couple of minutes.  Never would we be able to get Joey to do that, lol.

Above and Right: Ian and Ace, K-9 unit dog, saying hi and quickly becoming friends.

We sat and watched the officers maneuver a very tight and small course where they had to be able to navigate slowly around cones without knocking them over and in some instances in tight circles.  This exercise helps the officers for when they have to do an escort and need to stay in formation and move at a slower pace.  An amazing fact about this unit is how exclusive it is to the BCPD.  The gentlemen shown in the previous group picture are the ONLY 6 officers in the unit of the entire Baltimore County Police Department, not just one location.  That’s over 2,000 officers.  After that day there are now 7 members of the Police Department Motor Sqaud.  The 7th member of the unit is, yup you guessed it….Ian.  He was given a winged pin that all the members and only the members of this unit wear.

Wings for the ELITE BCPD Motor Squad

Finally after an hour and a half, it was time to let the officers continue their training uninterrupted as well as time for us to leave and move on with our day.  I can and never will be able to extend my thanks to not only the Baltimore County Police Department for allowing us to attend but to Tzvi as well.  Tzvi you are an awesome person in your own right and your drive and enthusiasm to be able to do things such as this is a huge inspiration to me and my family.  Thank you all!

Sunday, June 15, 2014

Happy Father's Day

Happy Father's Day to all the fathers in our village, especially Brian.

I remember the day we found out we were going to be parents. The dreams we had for our kids, our family, the talks about what we wanted for our future and then finding out we were expecting twins. We took sometime to adjust to that and continued on our journey. We have come a long way, our dreams have changed but we have them. We have learned "to smell the roses". It has been a road. We have learned so much about being parents, you have learned so much about being a father... A DAD. You cherish all that there is in being a DAD. Yes we get frustrated, just as any parent. You have learned patience, that to comes and goes. You pick up when I need a break, you pick up when I need help, we do it together, and for that I am grateful.

Becca and Ian, as do I, love you with all our hearts. You are there for us, for our family, to help make our ever changing dreams come true, to learn how to accept who we are with all our limitations. Being a parent is a wonderful gift, being a parent of a medically challenged child is a special gift...together we have learned how to be both a parent and a parent of a medically challenged child..thank you for being a DAD.

Remember to be true to yourself. Treasure yesterday, Dream of Tomorrow but Live for Today.

Thursday, June 12, 2014

All About A Girl

Today was a wonderful day, bitter sweet, both kids should have been moving up and onward to middle school (I had my few minutes to grieve that). Chatsworth's 5th Grade Farewell was today, it was all about a girl...BECCA. She moved up and onward. We could not be prouder. She has taken everything which has been dealt to her and worked thru it...figured out a way to become who she is, thru smiles, laughter, tears, yelling and kisses. She has figured out a positive way in life. We remind her many times that she is just a child, to have fun, still be childish...after all she is only 11, plenty of time to be a grown up and even then she will still need to be childish at times. She is on her way to becoming a beautiful young lady who we are all extremely proud of. Elementary school has taught her many things and the Chatsworth family has been there to help our family thru them all...don't worry Chatsworth you still have Ian (one more year). Way to go Becca, our 6th grader!!!

Sunday, June 8, 2014

23 Months ....

Maybe we are trend setters. 23 months until the twins b'nei mitzvah and they received their talit.  After meeting with Gilchrist months ago, we decided to make our memories now. The kids began their journey towards their b'nei mitzvah. Months of preparation came to a conclusion today. The kids worked hard...Becca mastered the Shema. Ian mastered the 1st line of the Shema. Both wrote a D'varh Torah from their learnings of the talit.  
I feel good about getting my tallit knowing that my daughter or granddaughter will have it after me. I learned that the fringes are to remind us of the mitzvot, or the commandments. One of my favorite mitzvot is when you do something good and it comes back to you. In Girl Scouts we do things such as making blankets to donate to the homeless shelter. We also donate food in our school for the hungry. When good deeds come back to you it makes you feel good inside and make me laugh and have a good time. - Becca
I feel good having the talit wrapped around me. This is special to me because of the fringes. The fringes help me remember mitzvot. I do mitzvahs everyday by making others laugh and smile. Having a nurse with me is also a mitzvah, I am the nurses friend. I help them to know how I like things as well as caring for them.  Helping others to understand about my disease is also a mitzvah. - Ian
Our family was there to celebrate with us and to see the kids receive their talit. We could not have been prouder of them. The Rabbis and Hazzan were wonderful over the past months in working with us to celebrate the kids...making our Jewish memories.  
Over the years we have watched you two go from infants to toddlers to pre-teens, overcoming many obstacles as individuals, siblings and together as a family.  Thru all of it both of you have gained many qualities which have helped you to get to this point.
Becca, our super girl, you have gained strength in ways you are not even aware of yet. Thru Girl Scouts you have learned many different skills, including doing for others. These characteristics and building blocks have allowed you to become the beautiful little woman you are today. We couldn't be prouder of who you are.
Ian, our super boy, the inner strength you show each and every day is a true testament of the man you are becoming. Your constant smiles and all the funny things you do each and every day show us  both the love and caring you have for others around you. Your willingness to learn and grow is what makes us proud to call you our son.
We are blessed to have you as our children and are looking forward to what lies ahead.
Now in 23 months we will celebrate their B'nei Mitzvah. ...