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!

Sunday, January 13, 2013

The child he was supposed to be

I just read a blog about a little girl who passed away when her dresser fell on her.

I know a wonderful family who lost their amazing 9 year to cancer.

I know a family in our community who lost their daughter to cancer last February.

I know that it can be worse.  I have said this before, and I will always always believe it.

Tonight however, my heart is aching.  It is aching for my memories of the Matthew I knew before he hit bottom.

My Matthew is an amazing drummer......he has played since he was 3 years old and makes music amazingly!  He should be in the middle school band, but he can't focus long enough.  He was going to be in jazz band, actually in my dreams he was going to be the most popular drummer in his school.  But you can't be the most popular drummer if you can't be in the band.

My Matthew loves people.  He loves to talk to people.  I thought he would be a politician.  I thought he would work with people.  I thought he would be on student council.  But he says the same things over and over and over again.  He takes every joke too far to the point of annoyance because for him if it is funny once it is still funny 100 times later.  He can't be on student council, he has not one friend in this world.

My Matthew is such a cutie.  He was supposed to have girls flocking all over him.  He was going to be one of the "cool kids".  Dancing at school dances.  Laughing and dancing at all of the Bar Mitzvahs of his friends.  But he won't have the girls flocking.  He wont be going to school dances.  Sure, he may go to some dances for children with special needs, but this isn't what was in my dreams.  It is not bad or good, it is just different from my dreams.

He was going to have one hell of a Bar Mitzvah!  At the age of 3, I debated taking him to Israel because he was  a very spiritual child.  I have looked forward to his Bar Mitzvah for so many years.  It is time to face reality- he will become a Bar Mitzvah but it will be in a very limited way.  You see, he loves Judaism, but his short term and long term memory are so destroyed that he can't seem to learn to read hebrew.  I thought he could do it by listening to CD's but even that for his favorite songs is causing him challenges now, so I can't imagine that learning hebrew prayers will be easy.

I am dreaming about what else his Bar Mitzvah can look like...I will come up with something because it will be a day that I need to celebrate, but it won't be what I dreamed.

I feel like I am mourning my child.  I feel like I have lost him.  Right now he is so deeply affected by mental illness and getting more and more lost cognitively.  He doesn't mean it.  I know that.  If he could fix it, he would.

Tonight my heart is breaking.  My tears are stuck in my throat.  I cried at Staples.  I cried while the boys ate dinner.  I miss my little boy.  I miss the future he was supposed to have.  I want to have this undone.  I want him back.

On Tuesday I have a meeting with the Pyschiatrist at 4 Winds.  I am so afraid that he is going to tell me it is time to face the reality that not much can be done.  I cannot "face that reality".  I cannot give up on my son.  But I also can't live like we were.  It is calm at our house right now.  We went bowling today, not at all a calm activity, and had a wonderful time.

Everything is calmer with Matthew in the hospital, except for the fact that my heart is breaking.  The little boys have time to have their voices heard.  I have time to think.  There is calm in our day, and right now I would trade it all in to hug my son!


  1. {{{{Amie}}}} My heart breaks for you and your in my prayers ALWAYS!

  2. Amie, I'm not sure you remember me, but I'm friends with Lisa Weber, so I saw your blog link on FB, and my daughters used to go to the SJCC.
    I wanted to give you some sympathy from another perspective. I am a math teacher at Vanderheyden Hall (which also has a group emergency unit that you may consider), and my students are all ED. Everyday I see rage, mental illness, and the effects of trauma. Fortunately, your son has a loving home, which is not always so for these kids. However,I see the difficulties of working with kids like your son.
    It is frustrating. It is dangerous. It feels hopeless too. My students are often at Four Winds. Many live at Vanderheyden, and some are not going home permanently again. The only good thing is that some seem to improve as they get older. The students do respond to consequences, but only when people are very firm and strong (often physically).
    I guess I don't have anything to add that you don't already know,but I just wanted to connect and let you know that even at his worst, there are people who will still care for and about him. And do what's best for your family.
    Penny Bennett