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| Pediatric Tracheostomies For parents and caregivers of children with tracheostomies. Please limit discussion to seeking and sharing of information pertaining to tracheostomy care, medical issues, special needs, disabilities, networking and moral support. |

05-31-2008, 09:59 AM
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Member
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Join Date: Apr 2008
Location: Oklahoma
Posts: 145
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Acts of Kindness
I have heard about the rudeness of strangers, and even family, when introduced to our special needs children. I was just curious if an act of kindness stands out to you and if you would mind sharing. I have two:
1. My husband and I took LizBeth to a restaurant one afternoon. As you know, it took several minutes to unload her plus all the "stuff." A gentleman on staff met us at the door and helped us in. Then the entire staff went out of their way to help us. It made for a very nice afternoon.
2. On a more personal note. I have taught Kindergarten for the past two years. All of my kids sent construction paper cards and drawings while LizBeth was in the NICU. But one little girl went beyond that. She worked really hard and earned a dollar from someone. (Keep in mind, she's five.) She took that dollar and put it in a card for Elizabeth. Her momma asked her if she was sure she wanted to do that. The little sweetheart said, "Oh Momma - Elizabeth neeeeeeeeds this dollar." I'm going to cry just writing about it. What a blessing children are!
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05-31-2008, 10:27 AM
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Senior Member
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Join Date: Apr 2007
Location: NJ
Posts: 2,549
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Kate was born in the fall, and came home December 18. A teacher we're friendly with put our name and story in at the office for the Helping Hands program that Christmas. The whole school collected money and gave us a couple of gift cards to the grocery store and Target. I still get teary thinking about those kids dropping their money into an envelope for us.
A classmate of Zach's gave us a blanket her grandmother hand kntted for Kate. His entire class made cards for her and sent them home to us.
__________________
Angela - mom to Zach 14, Jake 12, Nick 9, & Kate 9/28/06 Pierre Robin Sequence, Stickler Syndrome, decannulated July 4, 2008 -- Kate's blog http://pieceofkateb.blogspot.com/
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05-31-2008, 10:31 AM
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Mentor
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Join Date: Aug 2005
Location: Canada
Posts: 4,648
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What a lovely thread to start.
When Abby was just a baby I was in the Disney store with her and I was carrying her in my arms. A teenager came over and asked me about her and she told me that Abby had an angel with her at all times. I just thought that it was so sweet. The teen was so kind and gentle. She didn't come across as feeling sorry for Abby, she just had a tenderness about her.
We have just come home from our Make A Wish trip, so my heart is overflowing with all of the kind people in the world who made Abby's wish come true. We went to Disney. There are so many people who were beyond being kind to my girls, it was truly overwhelming. My heart has been energized byt he love that we felt.
Tess
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Tess-mom to Abigail 9 yrs old. DX Central Congenital Hypoventilation Syndrome and has a pace maker. Abby was decannulated April 15, 2010. She now sleeps with a V-pap machine and mask. Also mom to a fiesty red head named Olivia who is 6. I am the happiest mommy right now, all is good.
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05-31-2008, 10:48 AM
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Administrator
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Join Date: May 2002
Location: Phoenix, Arizona
Posts: 7,320
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Last October, when we were on a family vacation in San Diego, as we were walking past the hotel entrance - where a lot of people were standing around and (as is typical) staring at Jack - one particular older gentleman broke away from his group of friends, came over to us and asked if he could say "hi" to Jack. He then looked Jack in the eyes and talked to him for a few seconds -- telling him what a special kid he was. I could sense that this man had a special connection Jack, and his public affirmation of Jack was so profound and moving. As Jack has gotten older and his baby "cuteness" has worn off, the majority of people tend to look away and/or disregard Jack as a person (at least those who don't know him). So, for someone to single Jack out of the crowd and actually talk to him ... well, it had me in tears to say the least.
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05-31-2008, 10:54 AM
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Senior Member
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Join Date: Apr 2005
Location: Home of the OU Sooners!
Posts: 4,112
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My most favorite thing that happens when we are out with her, is when someone comes down on her level to talk to her. They sit, crouch, get on the knees or whatever, to talk to her at eye level and I love that it makes it more apparrent they are talking TO her not AT her.
__________________
LORI--MOM TO ELLA AND EMMA(born 10-16-04)AND DEREK (born 9-13-01)
EMMA- CP,TRACHED, G-TUBED DEC 2004 AND VENT DEPEND JUNE '05, CORD ACCIDENT DUE TO MONOCHORIONIC MONOAMNIOTIC TWIN PREGNANCY
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05-31-2008, 10:58 AM
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Senior Member
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Join Date: Mar 2002
Location: Fort Collins CO
Posts: 1,540
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Over 10 years we have experienced so many acts of kindness! I am glad you posted this. As we all know the bad always seems to out-weigh the good and this post forced me remember all of the good we have experienced. I won't, of course, remember or tell them all as that would take forever! lol
As Celia lay in the PICU at 9 weeks old sedated, intubated, on every machine imaginable, her tiny little frail body fighting to live, the mom of a little baby who had just had heart surgery pulled back the curtain between our babies beds and asked to pray over Celia! For someone, in their own time of turmoil, to think of someone else was the most selfless act! I bawled like a baby as her hand hovered over Celia's chest and she prayed for Celia's life!
Many, Many times when we have been stressed to the max, away from home, running from one appointment to another, the staff at resturaunts or stores have made things better by being so accomedating and friendly!!
There are so many more things but I will stop there.
Over the past 10 years things have improved so much in regards to how people react.
__________________
http://mamazgirlz.blogspot.com/
Gretch mom to, Heather(22), Aimee(19), and Celia(14) Dandy-Walker syndrome,cleft palate(repaired at 9 yo!),t-tubes,asd, left pulminary arterial stenosis,trach,aspiration,reflux,fundo,g-tube,npo,dysphagia,kidney defect,neurogenic bladder & bowel,spina bifida,scoliosis,seizures,hip dysplasia, sensory issues, ADHD,vasomotor rhinitis,autistic like behaviors, hearing aides.
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05-31-2008, 01:04 PM
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Senior Member
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Join Date: Jan 2007
Location: Colorado
Posts: 3,979
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When Ayden was younger, we used to gp to a local chain restaurant and each time we go in, they remembered Ayden and would always ask how he was doing. In addition, they talk to him just like he was a baby. One time our battery on the vent was about to die and since we always sit by a wall off the path and they said just plug it in right next to us. We hadn't gotten our food yet and so we were just going to grab it, pay, and run home, but we got to enjoy our dinner in peace b/c Ayden was asleep!
In addition, our first waiter there informed us he was a preemie - all 6 feet 4 of him!  
__________________
Dawn

former 26 weeker -- 4/2006 -- trach, g-tube, nissen; came home 1/07 vented 24/7; Successfully decanned 8/8/2008 - 
Follow decan at: http://sleepy-dogs.blogspot.com/
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05-31-2008, 01:28 PM
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Senior Member
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Join Date: Mar 2007
Location: Bardstown, KY
Posts: 2,494
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Well, I have a HUGE one to share. We had several acts of kindess stand out but this past Christmas we were truly blessed. First, I got an email from a complete stranger telling me she reads my blog and her church wanted to adopt our family for Christmas. They sent a lot of nice things for the boys, but most importantly was a Nintendo DS that Matthew wanted and we could not afford.
About a week later, a woman I had met on another message board asked if I wanted a turkey for Christmas and we made arrangements for her to bring it over about 3 days before Christmas. She came in with box after box of gifts for my family. The members of the forum had a hidden thread and had been planning Christmas for my family since August! They'd done it all in secret and right in front of me, posting threads like "what's your favorite color" and "what size do you wear". Everyone was answering so how was I to know?
Both groups did it because they had gotten to "know" Tommy online and thought our family deserved a little sunshine after all we'd been through with him. I have never been so touched and blessed. I can never begin to thank all of these complete strangers who made my family's life magical for a few days.
__________________
Rene, Mom to my Angel, Tommy. Born 9/25/06 at 33 weeks, with Single Ventricle Heart Defects and Cricopharyngeal Achalasia (Gtube dependant, poor swallow). Trached at 2 months for Severe Subglottic Stenosis. My little flirt died unexpectly 8/20/08 from complications from undiagnosed bronchopneumonia.

Forever, Tommy's Mommy http://www.musingsofaheartfamily.blogspot.com/
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05-31-2008, 03:16 PM
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Senior Member
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Join Date: Oct 2005
Location: St. Louis, MO
Posts: 2,823
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Great thread!
A high school church friend found out about Nathan from her parents and organized a bake sale at her current church. The group sent the money to help with Nathan's day time nursing expenses.
Everyone at Nathan's preschool has been amazing with him--from the teachers to the office staff. Everyone knows his name and our story, and they treat Nathan wonderfully well.
We take Nathan out a lot and at each of his favorite haunts around town someone has bent over backwards to hold the door open, call him by name, look him in the eye, sign with him, etc. He is treated like a rockstar!
It makes me smile to think of all the special people who have reached out to Nathan. These incidents far outweigh the negative or grumpy ones! 
__________________
Kristy
Nathan is 7! Trached at 2 hours old--laryngeal atresia. Double stage LTP 5/26/06, double stage LTP 1/23/09 and single stage LTP 4/21/09. Airway has restenosed, but we're still trach free 9/2012. Ding dong, the trach is gone!!
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05-31-2008, 07:09 PM
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Senior Member
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Join Date: Jun 2004
Location: Northern Nevada
Posts: 2,764
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First and Foremost, I feel this family of mine is blessed beyond measure. I know that many do not understand or even accept what Merrill and I have done with our lives, but we so believe that God called us to adopt special children at really early ages in our lives. We give Him all the glory.
The answer to this one is without a doubt too long for me to list here. It is more things than I could ever even think of in an instant or to write in this tiny space.
Here are just a few:
We have been sponsored every Christmas for at least the last 14 years. People we do not know, TV stations, the newspaper. The list goes on and on.
When Malachi was dying of cancer, Merrill became unemployed for nearly two years. Our house payment was made every single month and many of our bills paid.
When I was in the hospital for three months food arrived every day for the family, people were there to watch the children, money arrived to help as Merrill took FMLA for 9 months to take care of me.
When I had to go to Boston for an experimental procedure that did not work, first class plane tickets were purchased for us both, without knowledge of who did that. The two weeks at the hotel were paid for.
Last year people in the community made a twin bed for McClain that is a replica of Grave Digger. Again we had no idea, it just arrived.
Last year we were guest of Leslie, Chase's mom and her entire unit to Fallon Navel Air Station, the children still talk about it all. They felt like royalty.
Every year, without fail money arrives when we are not even thinking about it. Sometimes a money order, a gift card, cash, we never know who sends it. Sometimes it is a rather large amount to a butcher shop.
Many times over the years when we have taken the family out to eat, someone picks up the tab before we can leave. We never know who.
This is just a small sampling of the things that happen to us. It is unreal. We are so blessed. I can never really express the thankfulness in my heart.
Roberta
__________________
Married to Merrill...33 years...Blessed Mom to 21 as of last count... Michael-33, Maxwell-29, Mallory-27 Justin-23, Marshal-23, Jesse-22, Jeremy-20, Micah-18, Mordachi-15, Jericho-14, LisaMarie-12, Joseph-11, McClain-9, Joey-8, MacGyver-5, Maverick, McCoy 2, his twin sister Macylea and the youngest Montana 16 months. Malachi and Jason-in Heaven watching over us all.
http://www.merrillsimonfamily.blogspot.com/
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