So very much can change in five years, friends. Today I am hugely thankful for our life. Today I love every single chromosome in Joey’s body. Today I cannot imagine our life without Down’s. But that wasn’t always the case. When Joey was diagnosed, I was angry and confused and depressed for months. OK, a year. It was tough and gritty and so hard to have these conflicting emotions inside me all the time–unbelievable love for my baby, sadness for the rough road that he might face, anger that it was happening to us. Momma, if this is where you are now, it is OK to feel this way. You are NOT a bad mom. You are a mom who loves and wants the best for your child.
I want you to know that I have been there. I have been angry and sad and lost and all of those things that you might be feeling right now. I want to help you get to the other side, and sometimes the best way to do that is to climb down into the pit with you. And today I’m climbing into the pit. I want to share with you something that I wrote when I was in the thick of the early days.
We can’t deliver folks from their pits, but we can sure get in there with them until he does.” –Jen Hatmaker, For the Love
The Top 10 Reasons that Life isn’t Fair
- Because more is supposed to be better. Yes, I can see that missing a chromosome could be a problem, but an extra one? Shouldn’t that just make him better/smarter/stronger/cooler???
- Because no amount of money or effort can “fix” it. Down syndrome is in his genetic makeup, and there is nothing we can do about it.
- Because this just isn’t me. I have actually rewritten this sentence 3 times because I feel so guilty to put this in writing, but… I have never been “good” with people who have special needs. It makes me very uncomfortable. And now I just said that I am uncomfortable around people like my own child. How wrong is that?
- Because I already have an interesting life story, thank you, and I don’t need another one. Yes, I know what a wonderful story we will have to tell and how Roo is going to touch so many lives, etc, etc, etc. But my adoption story (which is on my former blog and which I may eventually retell/import/turn into a book that no one would actually believe) will suffice for me, and Roo could find other ways to touch people.
- Because “How are you?” shouldn’t be such a complicated question to answer. Do you mean right this moment or overall? Do you mean how am I doing with Roo’s diagnosis or aside from it? Or maybe you’re just being polite, in which case I still don’t really know what to say.
- Because this one tiny little chromosome screws up every single area of life. He starts physical therapy this week—before his 4-month “birthday”—and occupational therapy next week. He has 2 holes in his heart. His right tear duct is clogged. Even his TEETH are likely to come in at different times and in a different order from other children’s. NOTHING IS NORMAL.
- Because everyone else gets to go home. We have had tremendous support from friends and family. But the bottom line is, no matter how much someone cares for us or cries with us or helps us… at the end of the day, that person gets to go home and go back to their “normal” life.
- Because this is not the “summer before kindergarten” that I had planned to spend with Lamb. I wanted to do so many fun things—all of the things I thought we’d have tons of time to do over the last 5 years but never got around to doing—and I’ve been in such a daze that we have done almost nothing.
- Because we have enough other stuff to deal with right now. There are other things going on right now, relationship issues that are breaking my heart, work issues that are stressing me out, childrearing issues that make me want to pull out my hair. You’d think that a major thing like this might help to put it all into perspective, but it just makes everything seem magnified about 100 times.
- Because every emotion I have is accompanied by guilt. When I feel sad, I feel guilty because I don’t want the big kids to think that I am sad BECAUSE of Roo. When I am angry, I feel guilty if I take it out on someone who doesn’t deserve it. When I am happy, well then I feel especially guilty because it seems just plain wrong to be happy in the face of what Roo and the rest of us are dealing with right now. How can we ever be happy again?
- Because other people have a lot more kids than we do without having Down syndrome—or any other “syndrome”—come into their lives. Yes, I know it is shallow and borderline mean to say it, but I’m emotional and venting so you’ll just have to forgive me because I’m going to say it anyway. Why couldn’t this just happen to someone else?
- Because everyone keeps telling me what a “special” journey we’re embarking on and all I want is the same normal road everyone else gets to travel.
And yes, I know it was supposed to be 10, but life is just so unfair right now that my “top 10” list has grown to 12 items.
So that’s my angry rant for tonight, friends. I apologize for sounding bitter, but I started this blog in part so that I could share all of this with you—the good, the bad, and the ugly. Tonight’s an ugly night. But even in the middle of all of my anger and hurt, a Bible verse keeps echoing in my head—one that I learned shortly before all of this drama with Joey started.
“Why are you downcast, O my soul?
Why so disturbed in me?
Put your hope in God,
for I will yet praise him,
my Savior and my God.” –Psalm 42:11
I will yet praise him. I will still praise him. Even though life sucks right now. Even though I don’t know what tomorrow will bring. Even though my emotions may vary “from minute to minute”, as I have started saying a lot. I will yet praise him.