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Thursday, August 27, 2015

Just Another Day

As I sit on my bed, the tears come easily. Thinking of other parents daily/nightly routines. Thinking of all the other boys in middle school, bonding with each other. Doing homework, running around outside.

It comes and goes. The grief. The anger. The hurt. The laughter. The joys. The smiles.

Many thoughts go through my mind when others share what theirs are doing, part of me wants to know, the other part of me does not. Please share regardless...I will mourn silently. 

The world goes on while I grieve for a child I haven't lost.

It is a very different pain to others. I know the pain of not having children. I know the pain of losing a yet-to-be-born baby. I know the pain of losing someone very close. I know that feeling of despair and anger and hopelessness. People understand when they know you have loved and lost. But very few know the pain of grieving a child you have not lost but know you will. 

I get to read to my son. I get to bathe him and dress him and kiss him. I hear him laugh when I tickle him and get to hear the sweet whisper of his voice. I get to have wonderful conversations with him. Yet, I still mourn the little boy who used to scream at his father, sister and myself; or sing with us. I grieve for the little boy who played in the sprinkler, who swam in the bathtub during his "playtime". I grieve for his gross and fine motor skills he has lost...no more walking or sitting and sliding around the house; no more cutting paper up into tiny pieces - what I would give to have to clean up many tiny pieces of paper from the floor. Now I can only dream about what his voice would sound like as he ages, what games he would enjoy playing, would he be a good athlete; the part of him that will never be. And I feel the loss and pain of that.

I grieve for all the milestones I have missed and will never have with him. I think about how much others might take for granted. Their children going off to school every morning, coming home to tell mom or dad about their day. We haven't experienced things others take for granted and that I believe should be part of childhood. There is a loss and a sadness for times that might been but will never be.

There is sadness that he cannot do things with his twin sister. Pain relying on others to tell me about his day/night when I should hear it from him. There is a lump in my throat when people ask what he wants for his birthday or Hanukkah -- there are not many things he likes to do anymore. There is pain seeing the frustration in his eyes when others must play for him - it's just not the same as playing yourself. 

He is here, but in many ways he isn't.

I have a son. He is my pride and joy. I am so proud of everything he does. But I still grieve for him, for the things he will never achieve and the experiences he will never have. And I grieve for myself as a parent when I see a world of parenting I can only ever dream about. 

As I sat on my bed, the tears came easily -- tears of heartache and anger, tears of frustration and pain.

It is all part of the journey. Before I can move on I need to grieve for the loss. And grieving takes time.

So please forgive me and support me. Life goes on and I understand that. I have no bitterness at that.

But sometimes those tears are needed. Bear with me as I grieve for a child I haven't lost, but know one day I will.


Wednesday, August 26, 2015

UPDATE - Rock ‘N’ Roll - Something a Little Crazy for Me

Woo hoo....there are just no words. Thank you does not seem enough. People from all over have come out to support me in my journey with the Rock 'N' Roll.
Thank you to you, I have surpassed my goal...that does not mean you can't donate. As part of TEAM IAN, I will be doing the walk with my friend, Heather Lev.  Your donation will go to TEAM IAN and Chai Lifeline if you donate to Heather. Let's help her reach her goal of $3,600 so I don't have to go walk on my own...support Heather and you are supporting me.

http://www.teamlifeline.org/my/61339

Heather and I have begun our training....walking, walking and more walking, by supporting all the kids and families that Chai Lifeline benefits. We have benefited first hand, helping Becca and Ian, along with Brian and I to thrive along our journey. We want to continue to help other thrive along their journeys. 


Thursday, August 20, 2015

How to Survive Being Friends With a Special Needs Parent

This was posted on a friends facebook page, originally from www.fireflyfriends.com.

It can be hard to be a friend to a special needs parent sometimes.

We can be highly sensitive, emotional people.

We're tried (all the time), we're busy (all the time), we're worried (all the time).

We want to be good friends to you too, and we're very aware that the friendship dynamic has changed as much from our end as from yours.

We forget birthdays, we turn down invitations and we hardly ever call you back when we say we will.

On behalf of special needs parents everywhere, I feel I can say that we still love you and want you in our lives.

To that end, I've put together a few tips from my own experience that might help us to maintain these very important relationships as we all negotiate this new landscape.

ASK SPECIFIC QUESTIONS

  • We understand that you don't always know what to say -- and neither do we.
  • Sometimes, we desperately want to talk about our children.
  • We'll give you details you never asked for, and find it hard to shut up.
  • We know this can be annoying, but sometimes it's about overcompensating for the fact that we might not have any 'big' news to share (no first steps or first words etc).
  • At other times, and for the same reasons, the general "How's Charlie?" question garners nothing but a one-syllable reply: "Good".
  • It's easier for both of us if you ask something a bit more specific: "How did Charlie like the zoo?" or "Is Charlie enjoying her new school?"
  • Don't be afraid to ask the kinds of questions that you would ask about any 'normal' child, eg. "How does Charlie like having Mommy all to himself now that Stella has started prep?", or "What would Ian like for his birthday?"
  • You may think these are hard ones because you and I both know that he lacks communication skills, but you can bet that I'll have an answer for you anyway.
DON'T FEEL GUILTY ABOUT SHARING YOUR CHILD'S MILESTONES WITH US
  • This is a tricky one.
  • It's one of those times it's almost unavoidable that we will feel a pang of pain and you know it.
  • We know that you know it.
  • Please understand that we can't help it -- and that we still want to hear your happy news.
  • This is especially true when we know your children well.
  • We want to celebrate with you!
  • There are a couple of things you can do to make this smoother, though.
  • Try not to offer your news apologetically.
  • We can feel that, and it feels patronizing and horrible.
  • Also, don't feel obliged to ask about our children in the same breath.
  • "Little Johnny took his first steps today, and he's only ten months old! (insert sympathetic look here) How's Charlie doing? Any changes?
  • This is awful, and puts us on the back foot straight away. You wouldn't do it if my child was a 'normal' non-walking ten-month-old, so don't do it just because my child is four and should be walking. 
  • This seems like a no-brainer, but it happens a lot.
  • Well-meaning friends and relatives make plans to do something that might seem difficult for Charlie, so we don't get invited -- or worse, we get the call that says "We didn't invite you because..."
  • The truth is, there are many things that are tough for us and for Charlie.
  • You'd be surprised to leave what we can do and do work around.
  • There will certainly be things we'd rather not attempt, but please let us make that decision, especially if it's a family-type outing that we would otherwise have.
TALK TO OUR CHILDREN
  • I can just about remember a time -- pre-children -- when I had not the faintest idea how to talk to a child.
  • I was never sure at what level you should speak to them -- was asking a three - year-old about school too hard? Too easy?
  • Would it be uncool to ruffle a ten-year-old boy's hair?
  • What's taboo with teenagers?
  • I can remember feeling awkward and strange when I saw friends with children.
  • I didn't want to ignore them, but what if I said something wildly inappropriate?
  • I'm guessing that's how a lot of people feel about talking to Charlie.
  • There's the added possibility of looking a bit silly because she won't answer you -- and perhaps won't even look you in the eye.
  • It really means something to us as parents, though, to see you make the effort.
  • A simple "Hello Charlie, you look cute in your pink hat" or "Lucky you Charlie, - I love chocolate too" is enough.
TALK ABOUT OTHER THINGS TOO
  • Charlie is but one aspect of our very full lives.
  • Don't feel like you can't talk to us about other things going on in both our lives -- sometimes we may even appear excited to talk to you about your tax return! (Well, appear...)
  • Seriously though, we do watch movies, and we do have jobs and we do have other children, and we still enjoy talking about all of them -- yours and ours.
  • We can even have whole conversations sometimes that don't have Charlie in them!




Wednesday, August 12, 2015

Rock ‘N’ Roll - Something a Little Crazy for Me

So I decided to do something a little crazy for me...walk in a marathon...well the 10K part of it...I want to give back and need your help in order to do so...

Chai Lifeline is a wonderful organization which has provided our family with more opportunities then I can even begin to share...but let me try to give you a glimmer of what they have done for us.
  • Becca has a big sister, Rachel, who spends time with her every other week doing things we don't have the time to do with her...little things such as going to the movies, paint your own pottery...we are grateful for Rachel being able to do these with Becca.
  • Ian has a big brother, Netanel, who comes over every week and spends time with him...playing on the WII or just watching TV.
  • Volunteers, Tzvi, Adena, Adina, Ouriel and Ella 
  • Dinner is provided for us once a week
  • CAMP SIMCHA SPECIAL...where to even begin with this. For the past 3 years, Ian has gone to this wonderful camp...along with his wonderful counselor, Danny. Danny and the rest of the camp staff have provided Ian with an opportunity he would never have...going to sleep away camp. Swimming, boat rides, helicopter rides, arts and crafts, concerts...an amazing experience for him.
  • CAMP SIMCHA SPECIAL....gives Becca sometime without Ian to be a kid. 
  • CAMP SIMCHA SPECIAL...gives Brian and I a break, peace of mind knowing he is being well taken care of by Danny and all the staff...the medical staff has gotten to know him over the past 3 years, knowings his little ins and outs. 
This is just some of what Chai Lifeline has done for us...here is more of what it does...round emotional, social, and financial support to more than 4,300 children and their families every year. Chai Lifeline's programs and activities changes families lives forever, returning joy and hope and enabling us to live full and happy lives despite the presence of illness. Its most famous program is Camp Simcha (and its sister camp, Camp Simcha Special); every year these two camps offer 450 kids a chance to forget about illness and just be kids again.


I am walking the Rock ‘N’ Roll Las Vegas Marathon, Half Marathon and 10K on their behalf. The training isn't easy, and the race itself will be quite a challenge too, but I am truly inspired by these children and their daily battle with life threatening or chronic illnesses. I plan to raise over $3600 by race day, and I hope you will help me reach this goal by making a generous tax-deductible donation.

Your support is a critical part of this effort and I know that together we can make a difference to Ian and his friends. All donations are 100% tax-deductible, and the Team Lifeline website (www.teamlifeline.org) makes donations quick, easy, and secure. Making a donation will only take a minute, so please donate today by visiting - www.teamlifeline.org/my/61338

Thank you for supporting me, and in doing so, helping children and their families cope with the diagnosis, treatment, and aftermath of serious pediatric illness.

I look forward to keeping you informed of my progress as a walker.

I hope you will also forward this to anyone you feel might be interested in supporting Chai Lifeline. Together we will make a difference!

Sunday, August 9, 2015

All Together Again

It is hard to believe that it has been 3 weeks since we dropped Becca off at Camp Louise and 10 days since we dropped Ian off at Camp Simcha Special. As of this morning, we are all together again.

Thank you Camp Louise for a wonderful summer for Becca. She was all smiles when we picked her up and did not want to leave. She shared stores about AiryLou nights, trip to New York, the chocolate lady, workshops and so much more.

Thank you Camp Simcha Special and Danny for a wonderful summer for Ian. We know he was all smiles with his Ferrari ride, chopper ride (playing eye spy for something green), bubble party, and all the nightly entertainment.

As for Brian and I, we did a little bit of playing...went to Hershey park and Annapolis. Went out with friends and did the responsible thing...worked. We tried to relax...Brian did it better then I did. The house was quiet, too quiet...
I have realized relaxing and quiet are not things I am good at anymore.

I guess it's good we are all together again and the relaxing and quiet are over. ..back to the hustle of our normal.

Thursday, July 30, 2015

Signed, Sealed and Delivered

Yesterday went well.. Ian has been delivered to Camp Simcha Special, along with his counselor Danny. They are ready for 10 days of unbelievable fun. 

Ian's arrival, yes he is in the middle of all the boys.
Ian's cabin...Fort Simcha, also known as B1.

Just one view of the van as we were leaving. We even had some of Ian's medical supplies go up to camp in Wednesday with Gila, one of the camp nurses. Thanks Gila..we couldn't have done it without you. 

More of Ian's arrival.
Danny and Ian when we first got to camp and out of the van after our 5 hour drive. 
One more from Ian's arrival... Now how happy does he look. Have a great 10 days little man you deserve it. Mommy, daddy and Becca love you.