At one of my old jobs I had to spend the afternoon with a teenage mentally handicapped boy. It was exhausting, like got-back-to-my-office-and-cried exhausting. After that day I decided that I had been wrong about parents of special needs kids. I had always thought one had to be "strong enough" to have that kind of kid, but after my day with him I realized one has to become strong because that's what one has to do.
And to be honest, without sounding like some over-the-top, hyperbolizing egomaniac, with that realization came a feeling that I shouldn't be surprised if one day I too would have a special needs kid. Of course we don't yet know how James will turn out. My Little Boy Blue could be a NHS quarterback who is well liked because he's kind, honest, and hard-working. But his bottle feedings are getting worse and worse, and I don't know why. I want to give him every opportunity to prove himself but I also want to just let him rest. I want to push him, to ask him to push himself, but I already feel like I've asked too much. And I know I've said it before, but this limitless list of possible outcomes for my son are overwhelming. Too overwhelming to think about and live my life. To think about them is to break down in tears, and a fat woman crying all day is no good to anyone.
I can and will keep asking for a miraculous full restoration. But in the meantime I also have to be prepared for God wanting James to be who James is, not who I want him to be. And who he is, is someone with brain damage.
Us pro-lifers like to say that every person has dignity, is made in the image and likeness of God, is beautiful. We say that even those who seem to have lesser lives actually have lives filled with beauty, joy, love, and goodness. We talk about the lessons they can teach us. I know that all of this is true.
But where I stand right now, it all sounds like a bunch of bullshit. I don't want my kid to be someone else's lesson. I want my son to be normal. I suspect that in the future I will know much more fully the truth of those pro-life statements. I suspect that they won't be rhetoric, they will be a part of my testimony. But for now, for now, they just smack me in the face and rip out of my hands all the hopes and dreams I have for my son, my family, and myself.
Kind people have told me that I'm strong, but I am not. The truth is that if you were in the same situation as I you would do what I'm doing. You'd do what you have to do to keep the plates spinning, knowing that the only reason any of them are up at all is because you have Help.
God didn't pick me because I was big enough. I think He picked me because I was little enough.
I so appreciate your honesty. Every time I'm pregnant, there are moments when I am gripped by the fear that this little stranger-baby could CHANGE EVERYTHING and what if, what if, what if. The fact that you're living this and expressing it just makes me respect you all the more. How else can the Lord shape us unless we have some idea of where we are starting from? I thank the Lord for your "littlness" and His bigness! May He bring full restoration to James and peace to you. Come, Lord Jesus.
ReplyDeleteSuch an honest and genuine post - I really appreciate your candor. We got your beautiful thank you card picture of James yesterday and he is just so beautiful. I wish I could be there to meet him in person, maybe one day...
ReplyDeleteBonnie, Aunt Nita says you are way to hard on yourself. And I wish you would quit calling yourself fat. I know there are many of us who need to lose weight (myself included) so maybe coming from me it's not as meaningful but you need all the positive things that you can focus on now. And even though you may need to shed some weight calling yourself fat everyday is not going to give you the motivation you need to start working on it with everything else going on in your world. We all pray that James will be normal but their is the reality with all that he went through in his first hour of birth that he may not be. I don't think any special needs parent looked at it with open arms and I'm sure they asked God why them. Since James is a baby you will love him because you have grown with whatever God has decided for James future. I'm not saying it will be easy because it won't. But lets still pray that James grows and his good brain helps the part that is damaged?? If I were you Bonnie I would have went outside and screamed in the open air a long time ago and you need to vent as this is healthy for you. Once we know James outcome there are lots of people to talk with and agency who can maybe help but right now we will keep hoping and praying that he's still been through a lot and maybe he's just tired. He isn't even six weeks old yet. Love you all and praying.
ReplyDeleteThis morning's responsorial psalm made me think of you - you are being held up in prayer.
ReplyDelete"Our help is from the Lord, who made heaven and earth."
I also thought of you this morning in the readings and prayers. Keep praying and don't give up! I have also had a 'special needs child' so I know EXACTLY how you feel..alone sometimes, helpless sometimes,mad sometimes...you can persevere.
ReplyDelete*hugs* Bonnie. Please be gentle with yourself throughout all of this.
ReplyDeleteI wish there were more I could do for you that just offer up prayers. I don't live in your area. I don't even know you beyond your blog. However, please know that I have been praying for James, for you, your husband and your other kids.
ReplyDeleteOur young assistant pastor had some wise words today about prayer. He said that as we are praying about a situation that God is giving us what we need to deal with that situation, whether it's the wisdom to make changes or the grace to endure it for now. I know that God will give you the wisdom to make the right decisions for all five of you and the grace to live each and every day.
Thank you for your honesty. It feels weird saying this is a "great" post given the severity of this situation...maybe a better word would be "powerful." Know that you and James continue to be in my daily prayers.
ReplyDeleteWhile reading this post, I thought you were in my head! You have such a way with words, Bonnie, ones I can't seem to find! Still praying for you, your family, and sweet baby James.
ReplyDeleteThis really moved me. Thank you so much for your honesty. Lots of love and many, many prayers!
ReplyDelete"God didn't pick me because I was big enough. I think He picked me because I was little enough."
ReplyDeleteThis is one of the best things I think I have ever heard. It totally knocked me on my rear.
As I read this post, the word that kept coming to mind was "honesty". Judging from the comments others have left here, it's the quality that struck them the most, too.
ReplyDeleteI think that in this world, honesty spoken with love is something so rare, and so desperately needed by everyone. Whatever life holds for you, the honesty that you pair it with will ensure that people will listen to what you say.