Friday, March 6, 2015

Trisomy Awareness: COMPASSION (Day 6)


Share on the fb page, TrisomyFamilies, and their blog, support4trisomyfamilies.blogspot,  And HASHTAG ‪#‎trisomyfamilies‬ ‪#‎trisomyawareness‬

Today's key word is COMPASSION ......

Before you read this - if you know me - please take into consideration this is NOT directed at anyone in particular but my general experience - over all.  I understand people have different situations, etc and so on - and I'm not trying to make anyone mad or feel guilty - it's just my feelings, and have been my feelings for a loooooooooong time ....

I want to share some of my experience with family and friends and people in general.   I feel a great need to spread Noah's story, and Nathan's (my non-trisomy medically challenged son).... I feel the need to share their journey and their lives.  I don't know how long they will be around, as things are so up in the air with Noah at all times because of what we know about MT16 and I feel so lucky he is doing so well in this moment, and I want nothing more but for that to continue. With Nathan, he just has so much going on, I'm not sure I can ever feel stable with him.  I am grateful for every day that I have with my children.  I over share sometimes.  And I won't apologize for it.   I just won't.  I feel the need to bring awareness to all of their medical issues.  Their main ones being the Trisomy and the Growth Disorder for Nathan.  I am their Mom, their Nurse, their Teacher, their Advocate and my world REVOLVES around my children right now.  So yes, my facebook feed is filled with my children, with their sicknesses, their daily rituals, their triumphs and their happiness... and I won't apologize for it.  And I understand that people get "annoyed" with me sharing so much of them.  Including the sharing of their GoFundMe page.

We aren't asking for hand outs, we are asking for help.  We *NEED* to get to the conference in the summer because we really *NEED* Nathan to see the doctor who specializes in his disorder.  We *NEED* help with some costs because every cent we have goes into supporting the family, the roof over their heads, the food in their bellies, etc and so on.  We travel to appointments ... here ... there.... and every where.....  We're not going to get to this conference without help.

And then, I see my good friends, my family, various people I thought would be more supportive of the kids - share other people's stories on their pages, and not share the boys.  And I guess I just don't understand.  They'll share stories of children they don't even know - but they know my kids story and it's like they just don't give a damn.

So yeah, that hurts.  I have a hard enough time posting their fundraising links ....  because I feel guilty almost ....  and so not to feel like I have much or any support at all is hard.

So I don't feel a lot of compassion or support.  Instead I feel suppressed and like people just roll their eyes when they see another post from me.  One of my kids is always sick.  Between Noah, Nathan and I - we all have bad immune systems.  If someone sneezes around us, we get sick.  It's crazy, but anyone who has a child with medical issues that involve the immune system not being as well functioning as it should can understand.

I really try to keep in mind that even when people I would HOPE would at least try to understand our lives, they don't have this type of life, with constant worry, constant appointments, constant reminders of their hurdles, and they don't understand.  So my day in and day out life is repetitive and mundane and when you have kids with medical stuff - with the daily reminders - it gets annoying because it seems as if all I ever talk about is what's WRONG with them, when that's not the case at all.  But I am also being realistic.  This is our life.  This is what we go through.  This is who we are.  And to sit and point out that - it gets annoying - makes me feel as if ..... my life has less meaning to them because they seem (at least from what they say) to think that I'm seeking attention when that's not even the case.  The attention I am seeking is the knowledge and the support for my kids.  NOT FOR ME.

I have been accused of having Munchausen By Proxy ... mostly by people who have actually NEVER EVEN MET ME.  I don't know how I can cause Trisomy!  I don't know how I can cause a cleft palate, or brain malformations..... or Autism.  I mean, I can see how I can cause my child to have failure to thrive, however - look at my other kids.  Look at Kaedyn who's 16 months younger than Nathan, who eats the SAME STUFF as Nathan....  he doesn't have failure to thrive.  And I am rarely ever alone with any of my children, I either have one of my adult kids around, or my husband, or various other people.  There have been therapists and nurses in and out of my house since Noah was born.  So if something was even THOUGHT to be a THOUGHT of any sort of anything on my end that would cause harm to my children, I think they would have picked up on it.  I think the doctor would have picked up on it.

And that hurts too.  I could never do that.  But a lot of families go through having CPS called on their families because of their children being failure to thrive, or there being some unknown medical thing going on - and the medical community not being able to find answers, so they blame the parents - think they are "causing" it ... so the only thing to do is to take that child out of the home, away from their parents - only to find out - no they really do have a medical issue.  It breaks my heart.

The world I want to live in would be so much more compassionate than it is right now.  It's like people have gotten de-sensitized to the stories of our children because there are so many stories out there.  Social media helps so much, but it also makes people think "oh geez, another sick kid..." and they just don't care - because it doesn't effect their life, their children are "normal" ... and it will never happen to them, until it does....   to them, to their family member, to a really good close friend, to a co-worker .... unless you get drop kicked into the world, it's hard to understand, and it's easy to ignore.

But the fact is......... every one of our children have a story that NEEDS to be heard.  And we all need to keep shouting it!  Shout it LOUD and shout it STRONG and keep shouting it!  If people don't like it, screw them!!  They can exit your life, and never have to hear it again - and then when they get drop kicked into that world and they come back saying "Oh my gosh I am so sorry I wasn't more supportive but can you be an ear....." ....  be that ear.  Show them what compassion and support is.  Even when you don't want to, because you know what it's like not to be supported and feeling alone.

Noah has Mosaic Trisomy 16.  Trisomy 16 is not compatible with life. There are zero known cases where a child with Trisomy 16 has survived, infact, most pregnancies resulting in a Trisomy 16 baby end before the first trimester and is said to be the leading cause of miscarriage (according to some literature.) There are less than 100 known cases world wide of surviving children with Mosaic Trisomy 16.  When Noah was born in 2002 it was around 35.  The advice given to parents who find out about this diagnosis during pregnancy is to terminate.  That was NOT our choice.  We were told he wouldn't live, we were told he wouldn't come home.  He wouldn't even survive the pregnancy.  We were told that IF by some MIRACLE he came home, he would be so mentally and physically delayed it "wouldn't be worth it" .... and yet, my son, who has Mosaic Trisomy 16, is 13 years old.  He is beating the odds because we didn't listen to what they medical community said and we trusted our journey.  I had to prepare myself for the chance he wouldn't make it, but I had such high HOPE that he would.  He shocked and amazed everyone, and he continues to!  He is The Boy Who Lived! There are a lot of Chromosome abnormalities.  They are not limited to Trisomies.  There are additions, deletions, and multiple changes in the Chromosome make-up.  Educate yourself!!  Ask me questions about our journey!  We love telling Noah's story! 

1 comment:

Tommy Deemer said...

I'll attempt to make a difference by posting something great for both Noah & Nathan because I love your family :-)