We are from a generation, well I am, of people who were raised in schools with special education classes (what they were referred to as back then, anyway). I was like any other child. It confused me at first why the kid in our class was not like everyone else, but for some reason (good raising, a good heart, I hope)- I saw them as people and not as 'special needs' people. In fact, as I have mentioned on here before, almost all of my friends in my imagination were crippled in some way. There was something about being imperfect on the outside that made all my imaginary friends have very sweet and kind dispositions, and all of them were quite lovely to play with. But it went beyond that, thankfully. I had a heart to befriend those who were not like me, and I almost liked unusual people better than I liked the 'usual' kind. Whether they were disabled, or just plain weird, differences not only made people beautiful to me, but wonderful, intriguing.
What can you learn from a 'normal' person? How to fit the status quo? How to behave in public? Certainly, these things make you typical- but they do not make you better. They do not improve society.
Differences improve society.
Have you ever had to love someone who couldn't talk back? Mothers do this for at least a year or two of their child's lives, and the truth is that it is the most challenging and loving thing you can do. To care for someone, to watch for their needs that they are unable to express with language. To passionately pursue their well being- above your own. A Mother's job is both rewarding and exhausting... It challenges you to be someone that is very hard to be. Someone who looks through the eyes of someone else- who puts someone else's well being above your own. As a Mother, you do a job for a short time that some have the responsibility of doing their whole life.
Not to say that the majority of disabled children and spouses and family members are unable to communicate at all, because many of them are able to express themselves rather clearly, but there are points in their lives where you have to put their well being in front of your own. Because yes, they need help- they are people who need help.
I found myself faced with a few questions recently that made me very uncomfortable.
Many people have suggested to us- or to others who have mentioned it to us- that Gabe's quality of life may not be worth what he is going through. I myself have to ask that question every day. My husband and I have talked about it, but the conversation always comes back to this.
How would we know his quality of life without giving him the chance to fight for it?
Gabe won't remember any of this, due to sedation and pain medications and his age, but we do have to recognize that quality of life is a question, and we have to, as parents, do what we believe is the very best thing for our child.
The question we were faced with recently was not about just Downs Syndrome, because there is no question in my entire mind whether or not Downs Syndrome babies have quality of life, because they do (and if you don't believe me go ahead and send me a message and we can talk about it), but of something quite different.
A question we have wondered and prayed to not be an issue many times was raised. Did Gabriel have a stroke or brain bleed that impaired him?
A nurse asked the question we were always tiptoeing away from, since she had noticed that Gabe had not been crying or reacting in his 'typical' ways.
When Nick called me to talk about this, a lump arose in my throat, in my chest, and in my stomach. A boulder. My son, who will face other challenges do to his hospital stay and his Downs Syndrome diagnosis, might be worse off yet? I couldn't help but let the tears well up in my eyes, while on Skype with my husband.
I looked at him and asked "What would we do?" And I already knew the answer. The fears were what made me ask that question. The fears of the possibility of him being so disabled that I wouldn't be able to have the third baby as we had been dreaming of.
"I don't know." He said.
For a moment, the fear of losing the little personality we had gotten to know before his surgery terrified me. "What if he's not himself anymore?" I asked. More tears welled up as I contemplated 'losing' the Gabe I had known before, to be replaced by a less abled version of himself. What would he be like? Would he be able to do anything?
"I mean, clearly we wouldn't give up on him, his heart is practically repaired anyway... and we love him." I said, trying to sound less pessimistic than I had previously. My mind was running in circles between the fears of what would happen to 'my' vision of our lives, and the hope that he would be okay.
The truth is, Gabe is likely fine, he still has mobility of all of his limbs and he is still weaning off of his medication. He started crying again, which was the sign we were waiting for that his brain was working well.. (He will have an MRI during his Cath on Monday to determine anything else).
But I was standing, very helplessly, questioning our entire world over the possibility of going through all of this only to lose the 'essence' of the child we had grown to love.
The truth is, many people have stood here, in my shoes (and worse) and fought for the possibility that their child would be okay, and I had questioned our entire world over the fears of OUR future. Not entirely about Gabe, but a lot about myself. You see, babies are rockstars. Their brains are still forming pathways, and with a stroke that took out half of their brain, they could still function very normally, because their brains heal in ways that ours cannot. They have so much hope, but my focus wasn't on the hope at that moment.
Define for me, Quality of Life.
Is a 'quality life' one that makes a difference in society? One that has a degree in college? One that saves a life? Is a quality life one that is loved? One that is treated gently? One that treats others well? Is a quality life one that effects the world?
This blog that I am about to share with you is of a dear friend of mine who has a daughter named Kayla. When Kayla was born, she was born with 'no chance', due to a stroke which effected half of her brain. This story will bring you to tears, inspire you, and hopefully enlighten you.
Kayla is a very normal girl- she is a person.
She has a very high quality of life.
And the truth is...
I define Quality of Life this way.
My son lived through odds that no one should be able to survive.
90 percent abortion rate of DS babies.
70 percent self abortion rate of DS embryos.
1 in 1,000,000 chance of his heart defects.
50 percent chance of miscarriage do to a hemmorage.
(Later raised to 80 percent)
He is a 1 in a million baby.
His life holds quality because of the following reasons:
1. He is loved.
2. God gave him to me.
3. His heart beats.
4. He is a person.
5. He is someone's child.
6. He is someone's brother.
7. He is someone's inspiration.
8. He is someone's hope.
9. He is someone's angel.
10. He changes the world by being alive.
Please take a look at this blog.
It will inspire you.