Friday, August 29, 2014

Heart Beatings

I find that some of the most difficult moments of special needs parenting occur when things are quiet.

I am seductively lured into a false and addictive belief that, as a family, we have achieved some kind of normalcy. For a moment, the rancid and toxic air that is our life, clears, I drop my warrior-like vigilance and begin to breathe the cool, clear oxygen. The refreshing air fills my lungs with a powerful force and I am rejuvenated, happy once again to be a parent like any other.



It is at these times of unusual quiet, when my heart becomes most vulnerable. It is when I am sailing serenely through life's doldrums when I am most often viciously attacked.

WHAM.

Like a victim of a drive-by-shooting, I have been targeted.

A single bullet fired from an anonymous attacker sails powerfully toward me and hits me squarely in the chest.

For a moment, my heart stops its life-sustaining rhythmic beat.

I cannot breathe.

And like a prize fighter stunned by the force of a single, strategically placed blow, I drop.



Yesterday, my heart was the victim of a yet another one of these hit-and-run attacks.

It has been a chaotic year for our family. We have been plagued by many unusual medical issues and difficult school placement negotiations. We looked forward to summer and the slower pace that accompanies it.

To relieve our stress, Nicholas and I spent much of our summer vacation meandering aimlessly throughout our quiet neighborhood, walking and talking quietly together.

The philosophy of "nothing to do and all day to do it" served us well throughout the summer and we learned to relax.

This week however, we have begun our preparations for Nick's new school year. One of them, to instill a more militant food security procedure in his classroom.

Nicholas and I decided that we will buy him his own lockable cabinet for school. In it, he will place his lunch. I will separate his meal into six separate snack bags. On every hour (9 am, 10 am etc) he is allowed to choose one bag and eat its entire contents. This allows him to be eating all day and minimizes the "when is it snack time?" questions for the teacher.

It is the same principle and technique we use at home. Nicholas loves his daily job of opening and closing our refrigerator and pantry. He loves keys and locks and containers. He loves having a job. He delights in locking everything up securely at night and opening it again in the morning.

Nicholas was very excited to incorporate this same food security procedure at school. Relieved, I think to learn he would not need to struggle with his food anxiety in the school environment.

I was feeling good about his happy response to this change.

I took a big gulp of the cool air.

He was so excited about this new procedure, he began to role play with his Dora Kitchen....a toy device we purchased years ago to help alleviate some of his obsession with food preparation.

He dragged his pink plastic appliance into my kitchen and set up his work space directly beside our refrigerator. Pretending that he was at school, he opened and closed the doors of his kitchen. Then, quite suddenly, he stopped. He looked at the big fridge and then at his own Dora fridge and noticed quite astutely that something was missing.

"Mom," he said to me with a matter-of-fact tone and a big smile,

"We need to buy me a lock for my Dora refrigerator."

And my quiet unsuspecting heart took yet another painful blow.



- - - - - - - - - - - - - - -

Lisa Peters writes about family life at www.onalifelessperfect.blogspot.com.

To learn more about Prader Willi Syndrome, visit www.pswausa.org.

57 comments:

  1. i just read this and i must say that last sentence was powerful. The lock missing on the dora appliance. reminds us how innocent our kids are. I have to tell you, my daughter started middle school last week and it has been roller coaster. I wish you and Nick all the best. Prayers to all of us. Its a long road ahead

    ReplyDelete
    Replies
    1. Thank you, we have often compared our lives to the high highs and low lows of a giant roller coaster ride too. best wishes to you and your daughter as you navigate middle school together.

      Delete
    2. Big data is a term that describes the large volume of data – both structured and unstructured – that inundates a business on a day-to-day basis. big data projects for students But it’s not the amount of data that’s important.Project Center in Chennai

      Spring Framework has already made serious inroads as an integrated technology stack for building user-facing applications. Corporate TRaining Spring Framework the authors explore the idea of using Java in Big Data platforms.

      Spring Training in Chennai

      The new Angular TRaining will lay the foundation you need to specialise in Single Page Application developer. Angular Training

      Delete
  2. bandar togel


    great


    Bokep tante


    Watch Online Streaming Porn

    ReplyDelete

  3. Online Gambling, Soccer Betting, and Reliable Gamblings the most trusted online bookmaker in Indonesia since 2009 with flagship and favorite games such as SBOBET, IBCBET, CMDBET Bola Tangkas which are in the betting and ball gambling category. Not only that, also provides a variety of other exciting games such as Casino, Bola Agile, Bola Tangkas Online Poker, Cock Saw, Togel, and Shoot Fish. You just have to register yourself with us to play all these excellent games.

    As the Best Indonesian Football Agent and Agent
    We guarantee that we are the best soccer agent Agen Bola Tangkas and agent in Indonesia because we always give satisfied service to every member. The proof of our members continues to grow and we also strive to always provide the best service for all. The main Agen Bola Tangkas thing that we prioritize is ensuring that all data and member transactions are at a high level of security, then we also guarantee a fast, secure and reliable deposit and withdraw transaction so that all our members feel comfortable playing Agen Bola Tangkas online gambling and gambling on. Bonus and Interesting Promo Idol Town

    Provides Bonus and Promo appeal to all, Agen Bola Tangkas including newly registered members and registered members. Everything can enjoy the exciting Bonus and Promo we provide. Therefore do not hesitate to choose us as your betting partner. Register now, Deposit, Play, and Win at gambling balls online

    ReplyDelete
  4. Fajartoto like to read your article because it really helps me. Thank you for sharing this post with us.
    Togel Online
    Prediksi Hongkong

    ReplyDelete
  5. The article attracted me and my friends to feel the same way, we will continue to follow your posts, try to post better articles, wish you success. I do not feel sorry for taking the time to read this post, it is really nice and useful to me, thanks for posting it.
    abcya best free online games, io jogos for school, friv 4 school games 2019, cá koi mini

    ReplyDelete
  6. Thank you for sharing the post. I have never experienced these feeling but I can understand. This is very meaningful.
    if you want to change the password of your wifi network but you don't know how, therefore 192.168.l.l has the tutorials you need.

    ReplyDelete
  7. Thanks for sharing this information. I have shared this link with other keep posting such information to provide best in class law assignment help online at very affordable prices.
    buy essay online

    ReplyDelete
  8. You can get your ex back and cure your infertility problems with Dr. Odunga.

    When I met Dr. Odunga, my husband had divorced me because I was a barren woman of 41 and I have been married for 21 years. I was devastated and confused as a woman of my age until when I went online to look for help on how to get my marriage back then I met Dr. Odunga. Within 48 hours of contacting him, my ex husband came back home and pleaded for me to forgive him and take him back after 5 months of divorce. I accepted him back and then I told Dr. Odunga of my bareness for him to help me with child. He did the spell and sent me the natural herbs for fertility that I will use and immediately I used this medicine, I conceived. My husband got me pregnant and I gave birth to a baby girl. Presently, I am a mother of a beautiful girl and I am happy in my marriage. This is all thanks to Dr. Odunga and his wonderful work. Contact Dr. Odunga Via Whats App number +2348167159012. Email at: odungaspelltemple@gmail.com

    ReplyDelete
  9. Your blog contains very useful and informative ideas aboutvastu consultant, thanks for sharing with us.

    ReplyDelete
  10. I admire this article for the well-researched content and excellent wording. I got so involved in this material that I couldn’t stop reading. I am impressed with your work and skill. Thank you so much. Professional Astrologer in India

    ReplyDelete
  11. Very well written article. It was an awesome article to read. Complete rich content and fully informative. I totally Loved it.best zodiac sign site.

    ReplyDelete
  12. Hello to everyone out here, I am here to share the unexpected miracle that happened to me … My name is Susan Christian , I live in London, UK. we got married for more than 9 years and have gotten two kids. thing were going well with us and we are always happy. until one day my husband started to behave in a way i could not understand, i was very confused by the way he treat me and the kids. later that month he did not come home again and he called me that he want a divorce, i asked him what have i done wrong to deserve this from him, all he was saying is that he want a divorce that he hate me and do not want to see me again in his life, i was mad and also frustrated do not know what to do, i was sick for more than 2 weeks because of the divorce. i love him so much he was everything to me without him my life is incomplete. i told my sister and she told me to contact a spell caster, i never believe in all this spell casting of a thing. i just want to try if something will come out of it. i contacted Dr Emu for the return of my husband to me, they told me that my husband have been taken by another woman, that she cast a spell on him that is why he hate me and also want us to divorce. then they told me that they have to cast a spell on him that will make him return to me and the kids, they casted the spell and after 24 hours my husband called me and he told me that i should forgive him, he started to apologize on phone and said that he still live me that he did not know what happen to him that he left me. it was the spell that he Dr Emu casted on him that make him come back to me today, me and my family are now happy again today. thank you Dr Emu for what you have done for me i would have been nothing today if not for your great spell. i want you my friends who are passing through all this kind of love problem of getting back their husband, wife , or ex boyfriend and girlfriend to contact Dr Emu ,if you need his help you can contact him through his private mail: emutemple@gmail.com or you can contact him through his website https://emutemple.wordpress.com/ fb page Https://web.facebook.com/Emu-Temple-104891335203341 and you will see that your problem will be solved without any delay.

    ReplyDelete
  13. Why do we have to spend money to buy things that are available and free? The Impossible Game is a website that has a lot of games suitable for many ages. The best games are built with HTML, CSS, JS today. Here will bring you the most comfortable relaxing time and completely FREE for you!

    ReplyDelete
  14. This article you've just presented is appealing. I'd like to learn more about these types of blogs. Thank you so much for sharing this blog.

    John Deere 5050d

    ReplyDelete
  15. I recently discovered your blog and wanted to express how much I like reading your writings. Thank you for sharing such interesting blogs. Eicher 380

    ReplyDelete
  16. This blog is so good. want more best information visit our site.
    Mahindra Arjun 605

    ReplyDelete
  17. your content provides the best information. For more best information visit our site.
    Eicher 333

    ReplyDelete
  18. this blog information is so good and thanx for sharing this information.
    Swaraj 717

    ReplyDelete
  19. this blog shares many things and really impressive. for more informative knowledge visit our site.
    powertrac 439 plus price

    ReplyDelete
  20. Mind- blowing content, I really enjoyed while reading this. Thanks for sharing this with us.

    claas harvester

    ReplyDelete
  21. this blog is related to my query and really so good, thanks for share.
    powertrac 434

    ReplyDelete
  22. I would like to thank you for sharing such amazing content with us here. I have discovered my knowledge very well by your content.

    massey ferguson tractor 1035

    ReplyDelete
  23. I really like all your blog posts and this is truly an amazing article, your information is very insightful.

    John deere 5310

    ReplyDelete
  24. Excellent post you have shared, kind of professional you are! Loved your whole website and content quality.

    Mahindra Tractor Dealership

    ReplyDelete
  25. This comment has been removed by the author.

    ReplyDelete
  26. I am pleased that this article provided me with some important information. Thank you so much for sharing it. Keep it up the good work.

    New Holland 3600

    ReplyDelete
  27. The information you've provided here is fantastic because it provides a wealth of information that is really useful to me. Thank you for sharing that.

    mahindra yuvo

    ReplyDelete
  28. you've provided some very useful information. I'm glad I came into this article because it provides a lot of important information.

    power reaper

    ReplyDelete
  29. This is a good post. This post gives truly quality information. I’m definitely going to look into it. Really very useful tips are provided here.

    earth auger

    ReplyDelete
  30. This is a good post. This post gives truly quality information. I’m definitely going to look into it. Really very useful tips are provided here.

    Mahindra 275

    ReplyDelete
  31. This is very much useful and convenient. I have discovered my knowledge by your blog. Thanks for sharing this.

    Types of plough

    ReplyDelete
  32. It's amazing content that you have presented here with us. I am really impressed with this one. Thanks for sharing this.
    pressure sprayer

    ReplyDelete
  33. It's Mind-blowing content, I have discovered so many things. Thanks for sharing this unique and informative blog with us.

    Pressure Sprayer Price

    ReplyDelete
  34. The quality content that you have shared with us is very much reliable and useful for us. Thanks for sharing this.

    Agricultural Sprayer

    ReplyDelete
  35. Hey, Publisher its a Great quality content, I am impressed with this one.

    Tractor Sprayer for Sale

    ReplyDelete
  36. This article is shared fantastic content. Thank you for sharing that.
    Swaraj 735

    ReplyDelete
  37. your blog is very informative and attractive. keep it up.
    Swaraj 744

    ReplyDelete
  38. I really like all your quality stuff, and the way you are writing it is just amazing. Thanks for sharing this one.

    Mahindra Jivo 365

    ReplyDelete
  39. Great quality stuff it is. I am really impressed with your quality content, thanks for sharing this.

    Massey 1035

    ReplyDelete
  40. This content is great for publishing. Thanks for sharing with us.
    Massey 1035

    ReplyDelete
  41. This content is great for publishing. Thanks for sharing with us.
    Massey 1035

    ReplyDelete