About Me


I am a single mom of three amazing boys!  All three of my sons entered my family through adoption.  All three of my boys have developmental disabilities. My oldest son, Matthew has been diagnosed with Fetal Alcohol Syndrome and Bipolar Disorder. David, my middle son, has a genetic condition, he has a duplication on his 15th chromosome which leads to autism like symptoms, seizures and learning challenges. My youngest son, Jacob has learning disabilities. Each of my children bring unique challengs to our family and also bring their own personality and joys to our everyday life!

Tuesday, August 13, 2013

Our village is quite a village

Tonight I gush!  I smiled a smile so big that my cheeks hurt!  I was a mom of a son in a performance who danced, and sang, and was just one of the gang.  It was as if someone read my last post and decided to give me a mom moment...but not only was it a mom moment, it was an awesome mom moment!  It was a moment that allowed Matthew to shine!

Tonight was the Zim (song and dance festival) at Camp Givah- a  Jewish day camp in upstate New York.  Matthew has only been at camp for 2 days, Monday and Tuesday, and so I wasn't even sure if he would be in the song and dance festival, but the camp director quickly assured me that all campers would be participating.  Given that Matthew is super musical, I always expect him to excel at singing and dancing, and I am usually so sad when he is in a performance because his disability screams out at me ( I know this is my perspective not the perspective usually of those in the audience).  Usually I see him wiggling a lot, and not walking in the right way, or being reminded to settle down etc......tonight was different.

Tonight he walked into the auditorium with the rest of the camp, clapping his hands and following the group.  Then when his group got on stage all of the kids put their arms around each other and Matthew was right in the middle of the group.  He sang with the kids, he was still, and just one of the group!  I was so happy, but the best was yet to come.

After the song his group was to do a dance.  He was INCREDIBLE!  He danced the entire routine....jumping and clapping in rhythm with the group.  He smiled and loved every minute of it but he never strayed from the routine! It was a mom moment that I needed!  I needed my boy to be part of the group.  I needed to see him happy, and dancing and with peers.  Tonights Zim gave me all that I needed....and even more!

I have been bringing David to his camp this week for the first time this summer.  Before this he was taking the bus to camp right from summer school.  I have loved walking him in to camp each day.  He has a favorite counselor, Rachel, who he rushes in to see each morning.  He loves doing puzzles and Rachel has spent the summer doing 500 piece puzzles with him.  Last summer she played hundreds and hundreds of games of UNO with him, so I am sure the puzzles this summer have been a nice change of pace.

David is not a child who shows that he likes too many people.  For those who he really likes he has a coy smile and a sense of comfort that he doesn't show to just everyone.  Well yesterday when I dropped him off he was just standing there looking at Rachel.  I went to talk to the director for a minute and walked back by David and he was still standing looking at Rachel.  When I asked him what he was doing, Rachel explained that she was going to get him a puzzle but had to wait a minute for another staff member to come cover the room.  I looked at David who was smiling the biggest smile, and I asked him if he was going to stalk Rachel until she got the puzzle and he broke out into a full tooth smile, giggled, and said "yep".  It was a little word, but the smile and giggle were priceless.

My boys are awesome....they are crazy making, and challenging, and exhausting, but also at the core, they are each fabulous!  They are fabulous for their very own reasons.  For those people in our lives who treasure the parts of them that I either cannot nurture, or that I find exhausting, I have a special fondness.

Matthew is currently obsessed with languages, but his counselor is loving his obsession with learning hebrew.  What  is exhausting me is being nurtured at camp by a fabulous counselor.

I love puzzles, but would really struggle to find the time to focus and do puzzles like Rachel has this summer-  Rachel has a soft spot for David and has nurtured him so much!  He is forming friendships, and has started chatting more and more as they do puzzles together!

Jacob is bouncing back and forth between being self confident and introverted constantly recently.  He seems to be trying to find his place again between big kid and little kid.  I loved spending the day with him today at my school, but I loved it even more as I watched him mess around with the counselors at the Zim tonight, stealing their hats, and giggling and laughing the laugh of a trouble making little boy who idolizes a teenage counselor!

Our roller coaster ride is full of highs and lows.  Luckily, while the lows are lonely and intense, the highs are so much better and are cherished longer!

I am so thankful that I have found 2 camp programs that are dedicated to including my 3 boys and are so amazing!  The boys have each had a rich summer experience, and tonight I had my mom  moment that will carry me through until the next one!

On Tuesday Matthew leaves for 6 days at a Jewish sleepaway camp program for children with special needs.....something tells me the next mom moment is just a few more days away!

Sunday, August 11, 2013

Blah

This weekend has just been a weekend when I am  alone with my thoughts or the boys, things are not so good......I am trying to remind myself that this is  a big week.  I am ending my 13th year at a job I have loved to move onto a new adventure....I don't do new so well.  I am at the same time excited and scared.

Add to all of this that summer school has ended, the boys are entering their last week of camp, and typically after Friday we would have the rest of the summer together.....instead, this year, I start my new job and I am piecing together child care.  I am sure the kids will be fine, but all of the change will lead to increased anxiety, which will in turn lead to increased behaviors.

I had set up a huge surprise for Matthew today with his respite worker- he was supposed to be going on a 4 wheeling adventure with a local not for profit agency called 4Wheeling 4 Healing.  I brought him to the place we were meeting them, and surprised him with the idea that he was going 4 wheeling for the day.  Jacob, David and I said goodbye, and we headed off on a much quieter adventure.  I was in the middle of getting a haircut when I got the call telling me that a tire had fallen off the trailer and so they had to call off the 4 wheeling adventure for the day because they had to get the trailer fixed.

The people from 4 Wheeling 4 Healing had done everything possible to try to get the trailer fixed so that they could get back up and running and give Matthew his amazing day, but it just was not to be.  We are set to reschedule, and I am sure that Matthew will be even MORE excited this time around.......

For me though this felt like our life's karma.......I am in such a debbie downer phase right now, as I am filled with anxiety.....would it have been TOO much to ask for his surprise to just have gone off without  a hitch?

I am spending hours watching families post their summer pictures on facebook- boating, great escape, days with friends on the lake, time at the pool, all sorts of adventures.....even outings to the movies are filled with pictures of kids and their friends.  Last night we drove out of our neighborhood past 10 boys ages 11-13, all together for  a sleepover party.  MY SON IS 12!    Will he ever have a friend?  Will he ever be invited?  He knew all of their names, but he is not their friend.  In his head he is, but in reality, well, I know he isn't even an acquantance in their world.

Trust me, I get it....he is exhausting.  Often I wake up tired from him.  I wake up to the tv blaring, the IPAD blasting music and him listening to a different song on the computer.  I am woken up in the wee hours of the morning to be asked what's for breakfast and can he get out of bed.  Then I am woken a short while later to find out what time is lunch or some other crazy question.  He asks questions, his questions have questions, he is awkward, a little off beat and very immature.  That doesn't change the fact that my feelings are hurt that he has no friends.

It hurts my feelings daily to look at facebook and see all of the things families are doing.  And then to talk to moms who say how hard it is...I want to scream and shout.  Hard.....you want to know hard?  Hard is being exhausted.  Hard is your 9 year old never, ever, not once, not even once, having a BM in a toilet- it is the bags of dirty clothes that I am getting from camp weekly because he had another accident.  Hard is knowing that your kids aren't included even when the families of other children with special needs get together.

To be truthful, hard is knowing that I am jealous of all that everyone is doing because I chose this harder life.......even if my kids didn't have special needs, a single mom doesn't have the disposable income for life's extras......but all moms want to give their kids the best, and for me that is no different.  I want to take them boating, I want to go tubing, I want a day at Great Escape, but I can't afford it all, couldn't do it alone even if I wanted to, and well......there is a limited number of people crazy enough to say "yeah.....let's invite the Bloom's!"

Hard is not knowing if it is me or them.....maybe my kids would be included if I wasn't their mom....Maybe it's me?

Hard is constant motion.......hard is noisy when all you want is quiet.  Right now life is hard.  I know that in a week it will all look better.  A week from now I will have said goodbye to Ohav Shalom, and I will be gearing up to say hello to Early Start.  A week from now I will have a fresh perspective I hope.

My plan is to make time for me to grieve this week as I say goodbye, but not to get bogged down.  I am going to work as hard as possible to keep my spirits up for the boys while inside I feel my heart full and heavy.

I always am aware that there are some who have life much harder.....but today, I am brutally aware that so many have it easier....I just want easier....I really, really wanted it easier today.