Thursday, April 12, 2012

{Always a Family}


One of the many reason I blog is to give people like you an honest glimpse into this life.  A life that includes raising a child with a terminal illness, dealing with death, finding hope and joy in living life, pursuing the amazing gift of adoption amongst many other things.  The reason I choose to be open and honest is mainly to help people who have never lived this life to understand what it is like -- and maybe help them find themselves better able to support other families in need or dealing with extraordinary life circumstances.

I love talking about Gavin's life and death. This week I just happened to run into a nice lady at Target who happened to notice Jayden's feeding tube and bag.  She mentioned in passing that her daughter had a feeding tube.  After the conversation went on I found out that her daughter was diagnosed with Mitochondrial disease -- the very illness that took our little boy away from us.  It was an amazing moment of being able to use Gavin's life to give her support and friendship.

Then she asked me this -- what was it like when he died?


Umm, wasn't expecting that.  I pretty much gave her my standard answer of, it was so nice to finally see him find peace and healing after suffering for so long. But there was obviously so much more I wanted to tell her -- but so many things I didn't want her to know or ever have to experience.

One of those things that I wanted to tell her is to prepare for some people to never fully understand.  For people to assume so many things that indeed will make an ass out of them. For people to think you have moved on.

After Gavin died one of my biggest fears was Madison.  Not so much in how she would cope but the fact that I had to come to terms with the idea that she indeed will forget much of what her first three years included.  I dreaded the day when she would draw a family photo and it would no longer include Gavin.


This happened about a year ago and it took my breath away as I expected it would.  But he tends to come and go from drawings depending on her thought process and the time of the year and we are totally ok with that -- we need to be ok with that.

However, this week her first grade class in talking about families.  The students were instructed to draw a picture of their family.  Madison either drew Gavin in the sky or told her teacher she was going to -- Madison was told that Gavin could not go on this photo that she needed to draw him on another page -- that this was only for people who lived in your house.

Umm.  Excuse me?  


In all fairness I'm hearing this from Madison so I'm sure there is some version of the story that I didn't hear and I really pray there is.  But what I want all of you to know is this.  We will never move on.  Just because  Gavin is not physically here does not mean he is not a huge part of our family.  We talk about him almost every day -- his photos hang on every one of our walls.  His legacy is so thick I could cut it with a knife.  

Never tell my daughter that Gavin does not belong in her family drawing.  

Madison proudly came home yesterday and told me she put him in the drawing anyway and told her teacher that her mommie told her is was ok.  

Seriously love that girl.


Jen said...

Oh Karen... I bet you felt incredibly stabby. But yay for Big Sister Maddison for sticking up for her brother even now.

Hugs to you all xx

hiswife518 said...

Oh my goodness, how did you not walk into the classroom and knock that teacher upside her head?! She definitely wouldn't have said something like that about a step or half sibling living in another home!!! Ooooh I'm full of righteous indignation right now! Hugs for your girl, what a wonderful big sissy!

Laura said...

You have helped me so much to better understand and offer support. I thank you.

Michelle said...

That is the worst when people simply don't get it.

Dreams and Chocolate said...

You must be really proud of her! Madison is a wonderful girl ;) Gavin is and always will be part of your family and no one has the right to exclude him from your family portrait !

Jennifer Hartman said... always

Sunday said...

Like you, I REALLY hope the teacher didn't really say that but sadly I fear she probably did.

You did the right thing in telling her she should do it anyway. In times like these following the directions is NOT the right thing to do.

Lisa Marie said...

WOW that's a messed up teacher. You can't tell a child she can't put one of her siblings in a drawing! Glad Madison did it anyway!

She may forget a lot of details about her first few years with him as she grows up, but his memory and life is such a HUGE part of your family, there is no way she could forget him entirely or not remember the love you all shared, forever :)

Jana @jana0926 said...

I've not visited your site before, but I came via Sunday Stilwell. We lost our first son and our now-7 year old who never knew him talks about him as if he's upstairs in the playroom. Most people are taken aback by it. He's not drawn him into a picture yet, but I know the time will come. I'm going to send this to his first grade teacher in hopes that it will give her the insight to talk about it when/if it comes up.

Thank you for sharing this. It's important to families to be FULLY represented as our children see fit.

Now to read the rest of your site. :)

Cathby said...

Hi, Sunday sent me over here, too.

What a wonderful site for an incredible family! I am a special needs mom (autism)... and I myself was adopted... so I enjoy reading about your family! Best to all of you.

Katy said...

Go, mama! And Madison! I am not very experienced with death, but I have known many who are and the ONE thing I have learned is that just because a child/mother/sister isn't still walking around on this earth, that doesn't mean that they aren't still living on in the minds and hearts of all who love them. I'm just going to assume that the teacher hasn't fully come to terms with death herself, and that's why she instructed your child in such an ignorant manner.

Brenda said...

Love that your daughter is full of confidence - enough to question what even grown-ups tell her. My mom lost a baby who was six months old to heart disease. We heard about he, visited her grave. Not many stories to tell b/c she was a baby. But I never understood or felt what my mom went through until I was told my own baby wouldn't make it.
((thank you for sharing))

Elle said...

Kudos for raising a strong-will young lady. And for handling that in a much better way than I could even dream of; I'm fairly certain I would've been down there biting her head off! lol

Patty O. said...

Good for you, and good for Madison! Your blog is beautiful, both visually and how you write.Thank you for your honesty.

Tami in MT said...

Way to go Madison!! I wanted to share that my little brother passed away when I was 3 due to HLHS. When I was in 2nd grade an author visited our school. They talked about their book and decided to give a copy away to anyone who shared their birthday (Jan 30th). Nobody raised their hand and so I did. While I was waiting, my teacher quietly told me that it wasn't my birthday. I told her I knew that, but that it was my brothers birthday who died. She kind of brushed it off and when I was called on she started to correct the "mistake". The author stopped her and not only gave me the book, but asked me to come up and "tell my brother's story" to the entire 2nd grade. I was honored!!
And I was looking through some pictures the other day that I drew when I was in elementary school. Cody was included in most pictures (usually laying down in a bed (casket?) either on the ground or in the sky). He was only 4 days only when he passed, so I didn't know him well but have vivid memories of him.

Auntie Jesse said...

What a beautiful family....... I just spent an hour reading your posts and crying my eyes out......I've been such a horrible mother today...... Thank you for reminding me what's really important.....and to always have hope. You are an amazing and inspiring woman. God bless you and your gorgeous family.

Laura Anne said...

Well done Madi.

I seriously want to find that teacher and give her a piece of my mind!! Not only because what about kids like Madi who have lost a parent or sibling, but what about kids like me or my siblings who didn't always live 'in the same house'. Does that mean my sister isn't my sister because we were looked after by different combo of parents? No.


I guess as you say Karen, some people just don't understand.

dannette said...

I am so glad that Madison has the confidence to be able to tell her teacher my mommie said it was ok! No one has the right to tell children who is and is not part of their family. We are an adoptive family and a foster family and our family goes so beyond who happens to be living within our walls at the moment. Family is so much more! We currently have kiddos whose brother died and even though we didn't get to meet him, we include their memories and honor his memory with them as he was/is a huge part of their little lives. I can't imagine living any other way than to embrace all who we have held dear.

Chris said...

I had to go toe to toe with a middle-school teacher that assigned a major project solely on genetic physical traits that you share with your family. Our son is adopted. He was mortified to be called out in front of his peers and told "just do the best you can". It was a closed adoption and we new absolutely nothing about his biological family. Hello? Did she want him to make up things? I spoke with the principal and was reassured that my son wouldn't be given a lower grade because of his situation. HUH??? Some people really have no grasp on anything beyond the scope of their own little world.
Yay for Madison being a confident, no-nonsense kind of girl!

Phyllis said...

I have been waiting for a picture of your whole family! Love it! Must be amazing to be with all four of your kiddos!

Jennjilla said...

Good for M for doing it anyway - I am so proud of her, too!

Anonymous said...

I am so sorry about what the teacher said. I hope and pray those words where not spoken, but I have a feeling they where. I am so proud of Madison!!

My oldest was killed in a car accident aug 8 2010.. My daughter who has Mito and other special needs and medical issues. To this day we can not even mention our sons name.

My daughter and him where the best of friends! There bond was like one I has never seen. I breaks my heart just mentioning her brothers name sends tears, for hours on end. Pictures have needed to be put away as well as she can not bare to look at them.

Not only is it hard on her dad and I as we wish those photos, but we also want to protect her from more heart ache.

She was there on the race track when her brother was killed.

If you have any ideas at all. I would love to hear them.

Many prayers. Laura

Anonymous said...

I sincerely hope you talk with this teacher and put her in her place. I am a teacher and am horrified at what this teacher said. She needs to be educated. And apart from the much bigger issue of Maddie being allowed to include Gavin whenever and wherever she wants, there is also the fact that teachers are NEVER supposed to give input or critique on a child's art. Art is supposed to be purely from the child's mind and ideas and no one's else's. Ugh.