Saturday, December 26, 2015
Friday, December 18, 2015
So I've been posting lately but not on how we are all doing. Over all we are holding our own. Taking everything one day at a time during a very hard time of year for people with neuromuscular diseases. Many people have asked how Ian is doing...over all ok. We have seen small signs of disease progression. He is harder to understand, not in that his voice is softer, more in that he is having a harder time with certain words and letters. The "s" is the main one that comes to mind. Getting the words "side" and "yes" out have become difficult for him. I would say 5 out of 7 days he is taking a nap as well as going to sleep by 9:15 (yup that's early for him). He's also having a hard time with the loss of Joey, we are taking that one day at a time and helping him get through that.
Becca is doing well. Currently, her grades are 5 A's and 2 B's. She just had a math test and was the only one to get an A. So proud of her. Girl scouts is going well. About 3 months ago she started horseback riding, and last week she jumped for the 1st time. She was ecstatic and we couldn't be more proud of how she is doing. She seems to be handling the loss of Joey ok.
As for Brian and I, we are doing ok. That seems to be how I am describing everything, "ok". I guess when you consider everything we go through on a daily basis, we are doing ok. Can't be doing great, afterall, we do have 2 pre-teens in the house, who both have the attitudes. All the while we are slowing watching one of them die...so we are doing ok.
As 2016 approaches, we will continue to do ok and grieve the things we need to as we treasure yesterday, dream of tomorrow but live for today.
Wednesday, December 16, 2015
Right now an estimated 30 million Americans live with a rare disease. In the U.S., nearly 7,000 diseases are considered rare, and for most no cure exists and few (if any) effective treatments are available, according to the National Organization of Rare Disorders (NORD).
From the exhaustion of a diagnosis journey to the crippling feeling of being alone, those with rare diseases and their families face a lot of unique challenges that may be difficult for others to understand.
The Mighty teamed up with NORD to ask their Facebook community what they wish others understood about their experiences. Here's what they had to say:
- I'd be more than happy to educate you if you ask about [my condition] rather than question it's existence. -Katie DeMore
- Most doctors have never heard or seen a patient with the disease. -Nancy Reeder Martin
- Smiling doesn't mean I'm suddenly healed. It just means I'm choosing to stay as positive through the pain as possible. -Evan Mundine
- Do not give advice to people with rare diseases. I know more about my disease than my own doctor does so please think before attempting to give advice. -Brittney Peebles
- People who hear you have a condition should never say, "Well at least it's not cancer." -Cheryl Olenczak
- They are only "rare" until they happen to you or a loved one. -Bob Longhorn
- Just because what you're experiencing doesn't fit into an easily diagnosable box doesn't mean you should be easily dismissed and overlooked. -Megan Wirts
- Fundraising is a big deal because government funding is scarce or nonexistent. -Rebecca Brewster
- I wish people wouldn't say, "Ahhh, I hope you feel better soon" like it's the flu! -Lauri Morris
- Nothing about rare diseases is simple -- not a diagnosis, not the daily care, not the long term. If you really want to know about my child, it's not a one sentence answer. -Elizabeth Grehl Breden
- Physicians need to understand that we likely know more about our disease than they do. They need to actually listen to us! Be compassionate and understanding. -Renee Walchak L'Ecuyer
- It feels incredibly isolating to want to help your child and not be able to because even the doctors don't know what's wrong. To not have someone who understands because there is nobody like your child. To not be able to have a treatment plan because there is no diagnosis. -Susie Stretton
- People can just be a good friend and listen and be there for you; they don't have to try to relate by saying they know someone who has the same thing. Hence the word "rare". -Jill Ritchey
- Sometimes you have a name that everyone knows (i.e. epilepsy), but a rare presentation of it (i.e. Lennox Gastaut syndrome) that means you don't qualify for studies and the meds don't work. It's a terribly isolating and frustrating place to be in medically, and the generic name doesn't give the correct picture to the public. -Kelly Shaughnessy Morris
- One in a million' means it's possible. And those "ones" need to count. -Hailey Remigio
- You may never really get a full diagnosis and/or prognosis. -Jessica Taylor
- I wish people who can't see your illness wouldn't judge. - Daen Dawneedo Frascati
- It can't be fixed by a simple visit to the doctor. There isn't a drug or something that can be given to cure it. It's always there and without research it always will be. -Sylvia Marsden
- To be able to talk to and meet fellow patients and have a conversation about our disorder without having to try to explain what it is is extremely valuable. -Neil Smith
- Some of your coworkers, neighbors, and friends who appear to be living "normal" productive lives are also living with rare disorders. I bet most people know (often without realizing it) at least one person who lives with a rare disorder. -Lisa McClellan Lucius
- We enjoy the confused look on [your] faces when we tell [you] the name of our illness/es! "Neuromye-what?" -Helen Lear
- Just because a doctor/pediatrician/ER staff hasn't heard of a disorder doesn't mean it doesn't exist. -Brittany Lazechko Alley
- Our caregivers go through so many sacrifices caring for us! It's a thankless job and I know I don't say "thank you," but I would not be where I am without them! -Mary Lou Briggs
- You will do and learn things you never thought possible. "Hope" means so much more since sometimes that is all you have. -Nicole Vallier
Tuesday, December 15, 2015
Touch my nose, my lips, my eyes
with your small hands.
Then touch my arms and chest.
Feel their shape
how real they are.
Now, touch my love.
No, not my chest or arms or lips.
You are puzzled.
How is one to touch love
and where is its place.
Love is not here or there
But who would
deny its reality.
Where does love reside
if it cannot be pointed to
as with other limbs.
Is it less real than my chin?
If anything, love is sharper, harder, softer,
warmer than bodily things, objects I can touch.
There are matters not subject to the senses
taste, sound, smell, sight, touch
Matters elusive to definition
yet known without doubt.
Known to make us cry and laugh
to move us to unimagined heights
to courage and self-sacrifice.
Experiences - like love or G-D
Cannot be fingered, placed or poked.
Of such things
it is wiser to ask
not where but when.
Don't ask where is love
don't ask where is G-D
ask when is love
and when is G-d.
-Rabbi Harold Schulwies, z"l
Monday, December 14, 2015
First they designed a shutterfly book for Ian, covering his 3 years of Camp Simcha Special. There were pictures I had not seen over the years, something we will have forever to cherish the memories he has had at camp.
|Ian going through the Welcome Tunnel his 1st year of camp.|
|Ian having fun.....well maybe.|
|Ian, with some of the guys and medical staff, getting ready to go for a swim....he looks thrilled...but when all was said and done had a great time. And even went in a 2nd time.|
Hanukkah has come and gone, hard to believe another year has past. But not without the wonderful Chai Lifeline Hanukkah Party. All the Baltimore and DC families were invited to the World Trade Center in Baltimore for some dancing, arts and crafts and goodies. Unfortunately, Ian was not feeling well that day so he stayed home with Brian and Becca and I went. Each family got a bag full of gifts which were picked out just for them. Governor Larry Hogan was there to help all of us celebrate. Becca and I even got on the dance floor for a little bit.
Saturday, December 12, 2015
Wednesday, December 9, 2015
Tuesday, December 8, 2015
Monday, December 7, 2015
Thursday, December 3, 2015
Thursday, November 26, 2015
Tuesday, November 17, 2015
It's the first day of our weekend camp. The old gang is back. There's Ian, Becca, Marci, Brian, Tee, and Donna; along with all the other campers. The weather is good today, but we will have to deal with fog tomorrow during most of our activities. Right now Ian and Marci have to get all the campers settled on so they can unpack. Becca, Donna and Tee are team captains this year. Brian is no longer in charge of activities because he's too competitive. He is responsible for keeping the equipment clean and he's not happy. Dinner has been served. All the campers are off to bed to prepare for tomorrow's events. It's Saturday, let the games begin. The first event is the canoe race. It was a close race until Becca's team canoe flooded. There was a small hole on the side that Brian said he never saw. The next activity was the Archery competition. Donna's teams' target kept falling because no one's arrow could penetrate the target. Later, it was discovered that the target was magnetic. The hiking trail was the last event. Every camper was to carry a 5 pound backpack for 2 miles. Tee's team came in last place because all of them complained about back pain. Each team lost one of the major competitons. How did that happen? It's a mystery. How did the new canoe get a hole? Why was one teams' target magnet when they're supposed to be wooden? What made one teams' back hurt so bad, they couldn't finish the trail? Is it a coincidence? Who was responsible for this? Wait a minute! It has to be Brian. He was the one who checked each canoe, set up the targets, and packed the backpacks. Ian and Marci are investigating. They found a little old storage room in the basement of the main cabin. They found a drill, the extra target, and too many rocks. When Ian and Marci met with Brian, he confessed. He didn't like being called the equipment man.
Sunday, November 15, 2015
Friday, November 13, 2015
Wednesday, November 4, 2015
Monday, November 2, 2015
|Joey...this is the photo I posted on Facebook|
|Joey on Saturday...all she did was sleep...her adventure on Friday tuckered her out.|
Wednesday, October 28, 2015
Children who go through unimaginable things are wise beyond their years. They get things, things which adults don't sometimes get. I believe they know they are dying, they know there is no getting better...they know what their bodies can and can't take. They know they are getting tired and weaker. You can see it in their eyes, hear it in their voices and the things they say. You see it in their smiles. They may not be able to express it in words but they know and you know.
It has been over a year since Ian's last hospital stay. We have managed to keep him healthy, to keep the nasty out of our home...but we know it will come in again...it's just a matter of time. Since his last hospital stay, we have had a similar talk with Ian about Heaven over Hospital...he gets so much more then you think. He knows what is happening with his body, he knows he is dying, knows he won't come off the vent, knows what he knows. He does not want to go back to the hospital, he doesn't want to be home, he wants to be at the Gilchrist Hotel. He knows heaven over hospital means he will be loved by many others he has not met yet, mommy, daddy and Becca will get there later after him. He knows he will be out of pain, running, jumping, walking, cutting, speaking, eating, swimming all the things he watches others do, all the things he used to do.
Brian and I have decided to let Ian make this decision, to agree with his wishes...we completely and whole heartly agree with the parents of the little girl.
Tuesday, October 27, 2015
As for Becca, as she always does she called me when she was home from school yesterday. I asked her how her day was and she said, "ugh". Why just "ugh", I asked. She proceeded to tell me that her mind was just not there, while she was there, her mind was not...oh boy do I understand that. "Where was your mind?" I asked. She said a little bit here and a little bit there and on life...well when Becca says on life it is always about what is going on at home and all she has to endure due to the hand we have been dealt. She has seen things a 12 year old should not have to see, she has dealt with things a 12 year old should not have to deal with...and I know that much more is to come. I knew she could hear some of the conversations with Ian, so I went to check on her. She told me that people don't get what she is going through...I told her that is correct they don't. She said some people don't believe that she is a twin and when she shows them a photo, they just look at him like he is a normal boy and it is not big deal. I tried to explain to her that they can't understand but it does not matter what other believe or think. She asked what was wrong with Ian...I told her that he was talking about being afraid of Heaven. That is when she broke down. Becca said that she does not want to come home to an empty house (right now she comes home to Ian and a nurse everyday). I told her I could not promise that, (initially, I know when the times comes, Brian and I will do what we can to ensure that does not happen). All I could do was hold her while she cried on my shoulder knowing that one day she will lose her twin brother...I felt helpless. I told her that over the years we have all been grieving and this was just one more step for her. Becca told me she felt G-d was preparing her a little bit more because she felt that it was going to be soon...my heart dropped. I asked her soon meant to her and she said sometime this school year....ugh....what if my daughter is right.... we talked about how we will work on getting used to a new normal after Ian passes away...at first one we may not like but one we would eventually get used to. She cried on my shoulder a little bit more and then told me to go check on Ian.
As quick as these conversations, start in our home, they are over. Not forgotten, but we move on....this morning Ian was good. Becca had a rough time getting off to school...so we let her go in late and with a little bit of extra time she felt like she could handle the day.
Please remember to treasure, dream and live. As another friend who is going through a major life crisis has been saying... Please, as always, hug your loved ones tight and kiss them often.
Thursday, October 22, 2015
Monday, October 19, 2015
This weekend, was his cousin Devin's Bar Mitzvah, and Ian went and enjoyed him self. He was out and about from 9:30 Saturday morning until close to 4:00 in the afternoon. He was tuckered out by the time we got home but no pain was to be hand.
Thursday, October 8, 2015
Tuesday, October 6, 2015
Friday, October 2, 2015
This morning started off early at Mount Washington Pediatric Hospital at the Wheelchair Clinic. We got to see a few faces we haven't seen in a long time, Ms. Sharon, Ms. Kathy, Ms. Trish and Mr. Craig. Over the years, we have worked with all of them for many different reasons. Today it was looking at modifications on Ian's wheelchair. He sits ok in his current chair but since his surgery modifications definitely need to be made. We are hoping for a new set of wheels, back piece, and headrest. The biggests obstacle will be insurance, here is to hoping that they give authorization quickly and with out questions.
This afternoon, we went to see orthopedic for his shoulder. X-rays were taken ... It is showing signs of healing. He can stay in the sling for comfort and we don't have to go back.
Woo hoo, two good appointments. Now it's time to stay in and out of the wet.
Wednesday, September 30, 2015
According to The Foundation for Children with Microcephaly....
Microcephaly means small (micro) head (cephaly). It is a neurological disorder where the head circumference is less than it should normally be in an infant or a child. The condition can be present at birth or develop within the first few years of life. Most parents do not know why their child has microcephaly and may never know the cause - even with advanced genetic testing. The most difficult thing we have found is each and every case of microcephaly is different. Some children have mild to moderate delays, while others have severe delays. Most of the time there is no way to know how your child diagnosed with microcephaly will develop. In some cases delays are apparent right away, and in others delays won't show up until after a year old. So the only thing that we as, parents, can do is just try to help our child progress, enjoy every moment with your child and take life day by day - trying not to worry about all of unanswered questions (which is must easier said than done).
Tuesday, September 22, 2015
Sunday, September 20, 2015
Over the past 3 weeks...I would like to say things happen in 3's and then you are done.
3 weeks ago our stove went up...ok, easy not so inexpensive fix, a new stove.
Last week, our microwave went up. Ok so another easy fix...a new microwave.
Well today, we headed down to the Pasadena area for a Chai Lifeline end of the summer family BBQ. We had a great time, Becca went on a jet ski, swimming, both kids went fishing. It was beautiful weather. Time to come home, we are 5-10 minutes into the ride and Brian said the temperature light comes on and then we start to see smoke from under the hood...the 3rd thing...our van breaking down. Thanks to my wonderful cousin, who also happened to be at the BBQ, the kids and I got home safely whole Brian waited with the van for the tow truck. Tomorrow we find out how easy and I'm sure not so inexpensive this fix is.
I know this is all just stuff, just frustrating and interferes with life.
I believe things happen on 3's. ..ok I'm done.
Friday, September 18, 2015
Well it is that time of year again when we need to keep the bugs away...bugs I say....the sickness bugs that is. Please respect our wishes and if you don't have the flu shot please reschedule your visit until after you have gotten it or flu season is over. If you are coming down with a cold or another illness or have a cold or illness, please reschedule. To a person with respiratory issues like Ian a common cold can equal death. ...sorry to be so harsh but that is our reality.
Happy Flu Season to all.
Wednesday, September 16, 2015
Monday, September 7, 2015
Thursday, August 27, 2015
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
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.
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
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.
- 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.
- 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.
- 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
- 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.
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/
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
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.