I’m exhausted. I have on purpose stayed away from Mia’s journey since posting last weekend. Because…
1. Several people jumped on board – helped in unbelievable ways – but then began giving their own interviews and discussing Mia’s life and the lives of “our” (when I say “our” – our community. Our WHS community.) children with expertise. People who have never met one of our children, seen their beauty, or truly understood our lives. When these people push to become so publically acknowledged – it seems no longer about Mia, but about possible personal gains. I didn’t want to be lumped in with those people.
2. This whole process has been so painful. To myself. To others. To have people publically say your child is not worthy of life? To have people analyze and compare your child with others? How severe is your disability? What is the quality of your child’s life? Blah. Blah. Blah.
It is so painful that I have barely been able to talk to people … have a real conversation with people – except those few who travel this journey with us. I can feel myself isolating our family. Battling the Demons Within.
This morning, I wrote this long post about how I was too exhausted to address these things. Because part of me is.
But, then I put that post away. Instead – I’m writing a letter to those who probably won’t read this post… but should.
You Feel Sorry for Me? Well I feel sorry for you.
I don’t want your pity. I don’t want your sad eyes. I don’t want your “I understands.” I don’t want your “I can’t imagines.” There is only one area that I could use a little support – in the struggles we face getting our children the care they need.
Other than that – I’m peachy-keen. My family is happy. My children are beautiful. Each in their own special way. Alexander is a blessing for us all. Do I worry? yes. But, Alexander is beautiful. Amazing. The heart of my heart. We don’t need your pity.
In fact … I pity those who have never experienced that kind of love. The love that doesn’t take word or milestones to prove. The love that is expressed by the tender touch of a finger or the sigh of a child when you are near. That unconditional love.
Not every day is easy. If you want to read about those – it won’t take you long on this blog to find a post about one a day that seemed difficult.
But – no one lives a life that is completely easy. No one. Our struggles are just different.
So here is the deal. I’m not going to justify my child’s life to anyone. He is just as God made him… Perfect. And I love him and will fight for him always. Whatever issues may arise.
And for those of you who continue to judge my children and others with disabilities… to determine “who is deserving” and “who is not?”
I will pray for you – because Karma’s a bitch.
I am a former teacher, turned SAHM. I have 3 children. The twins, Andrew and Addison, turned 3 years old in October. I also have a 1 year old baby who was born with a very rare chromosomal disorder - Wolf Hirschhorn Syndrome. The good, the bad, the ugly.. all here. Because this blog keeps me from drinking.
Best last line of a blog post ever!
Well… I did wonder about putting “pray” and “bitch” in the same sentence… but it was the only way I felt.
Totally, Laurie!
Arnebya recently posted..Writer’s Workshop: No Butt Marks
Well said!!
That was an excellent point Kristen!
Kristin – without your support… I don’t know what I would be doing. xoxo
Well said. My oldest son, who has Fragile X Syndrome, is one of God’s greatest gifts to me.
I’m so glad you stopped by – and commented. I 100% believe you. And – I love that you said oldest son – because that meant you went on to have more children. Complete awesomeness
Awesome post! I totally agree!
jodi recently posted..a quiche is not a pie
Thanks! It has been so difficult to navigate this path lately.
Perfectly stated.
You know… You guys are my rocks. My rocks of life. I could have never come this far without your support. xo
Love this post. I tried reading some of the stuff out there but was so frustrated at the opinions expressed that I just resorted to praying and left it at that. Love you and am so glad you can tell it like you see it.
Awn recently posted..Good Morning, Good Morning
Awn – as someone who has known me for almost 1/2 my life now (how did we get that old?) – I feel our friendship just gets stronger as we get older. Thank you for supporting me. Cross that… Thank you for supporting us.
I had to stop reading stuff online days ago. It was making me so angry and I am half a world away and can’t do anything much to help. I did post some WHS facts as my final post on the matter. And I love your last line too. Much love xo
Anna@blogaboutabloke recently posted..Garden stuff
Um…. I just cussed on your blog. Sorry about that. But I couldn’t stop myself. Love you and your “Blokes”
See, posts like this are why I followed you and stalked you to be my friend. You are real, Kristen. From day one of finding your blog, your love for all three of your children showed through. Just keeping being you!! xo, the other Kristen
Kristen recently posted..Weekend Breakfast at Our House…
Thanks Kristen. Listen – we have to do something… start a business or something. The two Kristens. Maybe it is because we spell our names the same way – or cosmic – or something. but I have a million ideas: and we need to act on them!
Kristen, I don’t know that I have ever shared with you the long story about my older sister. I am one of three girls and I am the middle child. I am 44 years old. My entire life I have had a sister with “something” her diagnosis has never been clear. Back then it was definitely not understood about any form of testing, you were told to put your disabled child into care and hope for the best, ignore them really. My mother did not do that. My father divorced my mother due to the strain it all took. He did not have it in him to father my sister, or us for that matter.
It’s a hard life growing up in a family where someone, in my case my sibling, is profoundly disabled. It’s hard for them as ‘the one’ but it’s a long, long road for the siblings and the parents. The days are endless, and the nights. They strain you and your spirit sometimes like no one can understand unless you have walked the walk. I still tell my mother, who at 72, still must financially support & all the other supports there are my eldest sister, that I admire her stamina and her desire to make each day of my sisters just a pleasant one. Because even though my sister causes a great deal of grief in our daily lives {she is delusional and paranoid on top of gross mental retardation} she still needs food on the table, someone to talk to and gifts to open on her birthday.
But as her sibling I am tired. I do not involve myself in her daily life because quite frankly I have enough to do here with my own special needs son……
So, while I do not pity you, my heart goes out to you because it appears to me that you are just the same as my mother. Fighting the fight as hard as you can. And women like you need friends like me standing just at their shoulder…….
Susan – this just made me love you even more… if that was possible. Thank you for sharing that. Sometimes we all need to be reminded that we are not alone. I worry about all of those things. (Read my post tomorrow)…
And.. I love that you are honest about your feelings. Thank you. I know you don’t pity me… just support me. xo
Awesome post. Just awesome.
Every life has value. Period. This is not something that should be up to the internet to debate. Those that argue against that have clearly never experienced the beauty that is life fully lived.
I had to step away because of some of our own ongoing health issues. But you’ve been on my mind.
You have been on my mind too… this post was difficult to write – but it felt to good to finally explain things.
It was beautifully written, and so succinctly sums up how I, and I suspect most moms of special needs kids, feel. We don’t need sympathy, we don’t need platitudes. We need friends, who get down in the trenches with us, who will love us in our ugly crying.
Our babies are beautiful… no.matter.what.