I hate tax season. When I start compiling all the documents, look at our W2 forms and realize where all our money has gone. A good amount to charity, not a great amount, but a nice amount. Money we worked hard for and in David’s case a lot of overtime. Money we are saving for retirement seems to dwindle each year. Vacations become more camping trips and economical. Holidays and birthdays become less extravagant and more meaningful.
CNNreports that the “average cost” of raising ONE child from birth to age 18 is a staggering $245,000. That is a quarter of a million dollars. This is the “average”, according to the report those in the Northeast can expect to spend an estimated $455,000. A half-million dollars and costs are rising. And that doesn’t include what your family may pay for auto insurance, driver’s ed, tutors or college costs (or the cost of your 25 year-old that continues to live with you).
Today’s Throw Back Post was originally published on 12-FEB-2013 after receiving Bridget’s latest IEP report.
Last week I was reading Boo’s IEP progress report (trust me, not as funny as the preschool progress report). It was kind of depressing (more on that later) but what struck me is how they set certain goals for Boo and when she doesn’t obtain them they focus (of course) rewording the same goal to make it effective. Continue reading →
About a month ago two bloggershad this idea: to flood the internet with stories of compassion. To battle back the dark news, the horror of this world and show that there is still good to be had. The date was chosen, Feb 20th and the rallying cry was heard: Let’s get 1,000 bloggers to talk about compassion.
Today’s Throw Back Post is about my friend Kaylee. A girl who is an incredible hero. Once again she is participating in the Polar Plunge to support Comfort Zone. The camp that allowed her a safe place to grieve and to grow. Please consider to once again donating to her cause. No child should lose a parent, but if they do then they need places like Comfort Camps. Her plunge is coming soon, Feb 28, 2015. Given the current arctic winter we are having, I am hoping she doesn’t have blizzard conditions!
I am in awe of children. Children who want to make a difference in other’s lives. Whether it is a huge movement like Malala or providing comfort for another child. I would like to introduce you to a beautiful seventh-grader named Kaylee.
When I first saw the title 50 Shades of Grey I thought it was book about being 50. Then I heard about “the book” and assumed it was about sex life after 50. I will admit I have not seen the movie. I had previously decided not to read the book when it was first published. (To be honest, I just couldn’t when I learned it made someone in their 60’s the hottest they had ever felt.) I understand fantasy, I know it takes a lot to keep the spark going. I like a smutty romance as much as I enjoy a book about snipers. Seriously, my reading taste is eclectic and varied. I’m generally not a prude when it comes to literature. Continue reading →
I do not write about my husband often on this blog. For a number of reasons, primarily because he doesn’t read it. I do not think it is fair to write about him and he not know about it. Also it isn’t fair. He has no recourse to refute anything I may decide to expose. Something I might think is funny or natural he might take offense to. After eighteen years (holy crap, we are old) together we have a nice rhythm and life based on mutual respect. Out of that respect I generally do not talk about him, here. Continue reading →
I was at a meeting the other day where I had to bring Bridget with me. It wasn’t a professional meeting. It was a PTA meeting, a group of parents (and teachers) most of whom had their own children attending.
It was horrible and my own fault. Bridget had been scheduled to see her favorite therapist for her favorite therapy: hydrotherapy (pool). It was cancelled due to the weather, instead of taking her home I tried to fit in this meeting. Usually Abby meets us, but she was at a school government commitment. That added to no pool equals meltdown. Continue reading →
Gratitude is “the quality of being thankful; readiness to show appreciation for and to return a kindness” (Oxford Dictionary).
Gratitude isn’t just being thankful and it returning a kindness. A pay-it-forward moment where not only do you acknowledge someone but you show them what it meant to you. We have lost the art of the thank you card. Now we “like” something or give a shout out on Facebook. It is quick and easy and (honestly) takes no effort.
I hate writing thank you cards. I would rather drop off a bottle of wine (or tequila depending on the friend) and cookies than write out and mail the card. I have tried to instill the art of the thank you card in Abby. To my mother’s dismay I have been completely failed. I have harassed Abby to write thank you notes and it never gets done. I forget to keep on her or I just give up.
Yet that girl never fails to surprise me.
One day I get a text from a friend. Her husband is the janitor at Abby’s school. Abby had left him a thank you note for helping (not her) her friend with a locker issue.
When I asked why if I have been screaming encouraging, her to write her thank you notes from her birthday yet she writes one for this, her reply: He doesn’t have to do nice things for me. People have to give me birthday presents because they love me.
Abby logic for sure.
I fell a little more in love with this daughter of mine that day. That she is paying attention to those who show her kindness and she is willing to show her appreciation.
Abby first day of preschool.
Unbeknownst to me this gorgeous girl has become a thoughtful young lady. One who breaks my heart as often as she mends it.
Gratitude is action. Abby and how she cares for her sister, her friends and even her school janitor? That is gratitude in action.
Today is the very first PACS1 awareness day. A day created by the parents of just 20 children, with the help of fellow bloggers. PACS1 is a rare genetic syndrome. So rare that there are only 20 children in the world that have been diagnosed.
There could be more children. So much more. Sadly there are countless parents out there with children who have unknown syndromes. Unless physicians are aware of the PACS1 malformation they will not know to test for it. Unless parents know that PACS1 exist they will not be able to ask their physician to test for it.
What I am so very thankful for, today, is finding the PACS1 parent community. Together we have discovered that common therapies help our children succeed. We have discussed what has worked, what hasn’t and how our various countries create special education advances. While small, we are making a difference. Not just in our families, but in others.
To be able to send a quick message, and be told YES we have that same issue. To be able to not feel alone.
I know, in truth, our family was never alone. We are so beyond lucky in our village. Those who are there (day/night, text/call, whatever we need). We have been surrounded by support each step of Bridget’s life.
Other are not so lucky. They do not have the resources, or the reach, to know where to look for the answers. To know that no matter what that answer is they have friends and family who will be there.
Here is why PACS1 Awareness is so important. The parents know that there are more families out there searching. When we were diagnosed in October we were told Bridget was just the third child and only girl. Based on the research from 2011 published just 3 years prior to our diagnosis.
In the three years since the original paper was published 17 other children had been diagnosed. (Research papers are not typically updated) If I hadn’t contacted the originators of the paper we might never have found our PACS1 families. We would not have known that while still considered an “orphan disease” (what they call syndromes with less than 200,000 people) we were more than 1 of 3. We are now 1 of 20. Maybe tomorrow we will be 1 of 100. I never give up hope.
Bridget’s doctor didn’t know to test for PACS1 because the research was not widely promoted. If doctors are unaware of a syndrome they cannot test for it, without performing full gene or Exome genetic testing. Without that testing we would not have found the PACS1 gene.
Sadly, most parents do not know to ask for it or how to go about getting the testing done.
If parents do not know about the possibility and if doctors do not know to test for the PACS1 malformation, more children will struggle with being undiagnosed. Undiagnosed is a difficult life for a family. We worry about early death, question what therapies to use and feel isolated.
With more awareness of PACS1 more research may be undertaken so parents will know how best to nurture their children. Please, I ask you…no beg you, share the PACS1 information with others. Join the PACS1 Awareness Day on Facebook (not a fundraiser, I promise!). Invite your friends to join you in spreading the news about this very rare syndrome.
(Un)Diagnosed and still okay 