tag:blogger.com,1999:blog-818973399306650502.post2464169318002448147..comments2023-12-21T05:46:01.833-05:00Comments on Happy Soul Project: It isn't fair....Happy Soul Projecthttp://www.blogger.com/profile/17653500216357181319noreply@blogger.comBlogger6125tag:blogger.com,1999:blog-818973399306650502.post-22374354656165151472016-10-02T16:04:50.380-04:002016-10-02T16:04:50.380-04:00Hang in there. And it's OK to fall apart and c...Hang in there. And it's OK to fall apart and cry, in the pantry. I always tell my husband to please just give me 1 day to self loathe and have a pity party and stomp my feet and cry and curse; just one day. Then the next day I get up and exactly what you said, there is a fight brewing beneath, and it gets bigger and then you move forward and take it head on. Every time Kai or Peter(my 2 oldest 9&7 have DS) get a new diagnosis added to the 2 page printed out list I want to scream. I worry constantly but am thankful their school has an amazing staff and call me if a hair seems to blowing the wrong way with one of them. I cant say it will get easier, because I have learned that we never ever know. Always waiting for the other shoe to drop is so very tiring and I do my best to put it aside, but the one time I did put it away because we felt safe I was walloped upside my head. Kai got stevenson johnson syndrome/toxic epidermal necrolysis, which has nothing to do with DS, but only happens in 1 in 1 million people **claps and takes a bow* A month long hospital stay, losing 80% of his skin as it blistered and sloughed off his body while he was in an induced coma...all because of an antibiotic for an ear infection, which is our nemesis. I just didnt realize an ear infection could be deadly.<br />Everything has felt so unpredictable since then, and I am sure that is how you are feeling. I do hope you find a comfortable place with all this. My best piece of advice is to talk talk talk with the teachers and aides. Be a presence at the school, a positive one, but a presence. This is our 4th year in with Peter in 3rd and Kai is in 1st and so is my daughter, but Ive made sure to be a positive advocate and educate and the teachers and whole school has taken well to it. I would trust my boys with their lives with those teachers and probably most of the staff in the elementary school. But I got in there and made myself known and have slowly been making small changes every year in the school. Hang in there and hugs.Juliehttps://www.blogger.com/profile/13948145493299789524noreply@blogger.comtag:blogger.com,1999:blog-818973399306650502.post-22803921878550887192016-09-06T21:34:28.352-04:002016-09-06T21:34:28.352-04:00It all sucks and is not fair to your family.
Pip...It all sucks and is not fair to your family. <br />Pip is going to be fine and as unfair as the situation might be she's got an amazing big brother who's always going to look out for her. I always read so many comments about what a good job you're doing with Pip(and you're doing absolutely effing amazing) but then I see pictures like this one of Noal and Pippy at school and think to myself you're doing a beyond amazing job with Noal too.Anonymoushttps://www.blogger.com/profile/10581978519068427202noreply@blogger.comtag:blogger.com,1999:blog-818973399306650502.post-27387391522859176452016-09-06T18:46:59.488-04:002016-09-06T18:46:59.488-04:00Jesus Tara, I'm so angry with you! Everyone ca...Jesus Tara, I'm so angry with you! Everyone can say it will get better with time, and it will, but in the meantime It just hurts and I'm sorry. You must see the good you are doing, cry it out girl but you will get through it day by day xxooAnonymoushttps://www.blogger.com/profile/14115366706020919525noreply@blogger.comtag:blogger.com,1999:blog-818973399306650502.post-30490657413194203992016-09-06T16:02:22.878-04:002016-09-06T16:02:22.878-04:00Oh my God! Yes...it FUCKING SUCKS!!!!!! 💜💙💚💜...Oh my God! Yes...it FUCKING SUCKS!!!!!! 💜💙💚💜💙💚💜💙💚<br />Love and peace to you and your family during this challenge. Your strength will get you through, even though you and I both wish it didn't have to! Best of luck with this next transition phase in your lives, Tara. TinaGreconoreply@blogger.comtag:blogger.com,1999:blog-818973399306650502.post-11166898083411518582016-09-06T15:18:52.613-04:002016-09-06T15:18:52.613-04:00Hang in there, Momma. As they say, things will get...Hang in there, Momma. As they say, things will get worse before it gets a whole lot better. Praying for your little girl. She is such a fighter and I really do admire her spirit. <br /><br />Hugs and much love from the other side of the world. 😊Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-818973399306650502.post-36091971958703380502016-09-06T15:12:50.374-04:002016-09-06T15:12:50.374-04:00You have done really well letting her go off to sc...You have done really well letting her go off to school .I know if it had been me I am not sure I could have .I homeschool my little one but sometimes wish I was brave enough to let her go to school . Its very difficult not to worry but try and just have a wee cup of tea and rest .Hugs from the ukAnonymousnoreply@blogger.com