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
Enjoy the read...
Wednesday, June 18, 2014
|Police escort to driving course upon arrival|
|Ian and Becca with BCPD Motor Squad.|
|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 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.