I need a miracle every day.

Last night we got into our car at Ft. Lauderdale airport after 4 days in NY and we hear on the radio “I need a miracle”. Damn straight we do. I need to vent. I need to contact the State Dept. I guarantee Bryan could get any suspected criminal or terrorist to break. Can you spend 4 days with someone who repeats the same things over and over and over and over and not crack? Earl and I did not sleep well and of course that exacerbates all problems and issues.

I am going to break this down into the bad and the good. I must do this in order to scrounge up what is left of my sanity. Oh and by the way, did I mention this was a vacation? WTF.

Bad:

1. Bryan announces “I have a sore throat” on the way to the airport on Thurs morning and then proceeds to get the juiciest cold he has had in at least 3 years.  I am particularly fond of getting coughed at right in my face.

2. Both kids don’t want to go to the Garden to see the Ranger game. Come on, are you kidding me here? Can you say buzz kill?

3. Both kids did not want to go ice skating in Central Park or Bryant Park.  Whatever.

4. We have an interview with the owner of the new camp we are planning to send Bryan to this summer. He does not engage at all with her. She asks if we will cut his hair before camp!!

5. Friday night dinner with my BFF Pammy, her husband, and delicious daughter Olivia; Bryan is sick, coughing, crying, whining. He doesn’t eat. He always eats.

6. We go to the Bar Mitzvah which was the purpose of the sojourn to NY. (this will actually appear in the good section too because there was a lot of good). So Earl and I go through our typical mourning. Our son will not have real friends at his Bar Mitzvah. He does not have the real attachments and relationships that typical kids do. Everyone at the party says, “oh wow, you guys are great” or “he seems pretty good”, “does he go to a regular school?”. People mean well and who the hell knows what to say anyway. I do sincerely appreciate that everyone was trying to relate, but I just want a day off from my life sometimes.  No one did anything wrong, everyone that we know was warm and caring, it’s just hard when your child is the one with the special needs. It’s just hard all of the time and sometimes it’s so in your face.

7. At this point Bryan is big, and he’s really unaware of his body in the universe. He has no sense of spatial relations as it pertains to himself and he bumps into people, gets too close, and steps on people’s feet. Sometimes people are kind and understanding and sometimes not. Sometimes I am kind and understanding and sometimes not. You get the picture.

8. The stares. The stares. The stares.

9. The plane ride home. UGH. By this time we have had 4 days of nonstop nonsense and we are at wit’s end. You would think flying on Jet Blue with the TVs would be enough. Sometimes the headphones make things worse because not only does he repeat, but he does it louder since he can’t hear himself. You can’t make this stuff up!

10. I had a mini meltdown. I heard my sister’s voice after we landed and just sobbed. I don’t want to burden her or anyone with our stuff. I just couldn’t hold the damn any longer.

Good:

1. The Bar Mitzvah! Bryan was so sick on Saturday morning that he was too chilled out to cause a problem during the service. If that isn’t the glass half full, nothing is!! There was also a nice little dusting of snow which kept him distracted.

2. He had some fun at the Bar Mitzvah party. The party was at the new Yankee Stadium Legends suite and it was a fabulous space. My friend who made the party did a phenomenal job; no detail was left undone. Her family, who I’ve known since I am a little girl, was loving and mushy. The room was spacious and we were able to give the boys some freedom.

3. Earl. I am so lucky to have a wonderful husband to share this burden. He and I help each other when one of us is at the breaking point. For ex. on the airplane home I sat between Bryan and Jason for the first hour or so. Earl was across the aisle. I got up to go to the bathroom and asked him to switch for a little while. Bryan was tough and I needed a break to catch my breath. We switched seats for an hour and I watched stupid tv; nothing better to clear the mind. When we loaded up the car with the luggage we laughed about our nutty situation. Laughter is the equalizer.

4. Going home. Bryan was able to decompress by playing Wii and just being in his own space. There is comfort in what is familiar, and that goes for everybody. 

5. The bad always spawns the good. Earl and I realized we need to change some of our behavior so Bryan will change his. We need to energize, push on.

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19 thoughts on “I need a miracle every day.

  1. Oh, Jane, big, huge hugs to you. I love reading your blog and being your friend. You are not afraid to tell it like it is and I just love that you are so open and honest about it all. Thank God for people like you who help me get through those times like yours.

  2. Jane, I am not an overly mushy guy…this makes me want to hug you. When Noah was born (10 week preemie) after his mom was in the perinatal unit for 2 months, I remember going outsidide and looking at the sky “I am not the right guy for a special needs kid”. The humans become what we need to be, you and Earl should be proud of yourselves. ❤

  3. You two are as tough as nails and have a survivors attitude. I have a brother who is 2 years older than me and retarded. I am his caretaker. At 42 I can look back and wish that my parents had been as strategic, proactive and realistic as you two. They didn’t do bad but they didn’t lean on each other like you two do. You can’t do right by your son unless you do right by each other and yourselves. Love your blog!

  4. Jane, my sister in law has a severly autistic on who she recently had to put in a home because he is a danger o himself. He has pica and and a escapee so she spent all her time being two stes ahead of him which is impossible . He also is also almost ten do going to big to handle. She also is going thru a messy divorce. You and Erwin are so lucky to have each other. My son had a severe seizure disorder as a baby which has resolved. He still has speech delays but we are one of tb lucky ones. I really believe thst you were not given your life if you can not handle it. You guys are doing a great job with Bryan . My question is why do our poor children have o go thru this crap??

      1. That is all you can do. I honestly think that when people go thru pain ESP with heir children, it makes you a better person. As corny as it sounds, you have a real perspective on life and not like others who live in a shallow bubble. The first tme I took my son t NYU ,a city hospital thts when it hit me. All these kids with cancer,seizures, such awful stuff it def makes the little complaints meaningless .

  5. from reading your blog and Earl’s facebook, the one thing that stands out over and over again is how much you take care of each other! It is beautiful. You are blessed to have each other.!

  6. …never feel guitly for pouring your guts out to your sister…I have 2 sisters and they are the only 2 people who no matter what, I can say anything to anywhere any time and as often as I need to…it’s never a burden…

  7. …i feel you, and i wish,too, that we lived closer, just for laughs and giggles.

    ,,you are soo strong, the energy and love pours out in huge helpings from you, your sons and husband are very blessed to have you.

    ,,there is no trick or silver bullet, there is only warmth from a friend ,,a hug from a loved one. Close your eyes little girl, rest, it’s time for you to catch your breath.. sleep cozy, you have angels on your shoulder,,

  8. Please continue to pour your heart out on paper. In doing so, we
    will come to see and know the world you experience. You are our
    teachers of a hidden life more common today than ever in history.
    I believe you will help us to “see” this situation when we are out and this may elicit appropriate responses from strangers. When we stare,it is not about the ugly human but about the confused,
    questioning human ignorant to your particular environment. Teach
    us! You are soooo not alone. You are using your voice here and I am proud to read every word you write. I want more and I ask that you help us be your friend and confidant on this journey, this
    lifetime. Please do not stop. Your world is important and begs to
    be shared. In exposing a truth, true understanding and compassion can emerge.
    Tony Willcox, my best friend and partner and a great acupuncturist
    in Delray Beach, gave me this blog this morning.

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