Home Not-So-Sweet Home

Well, I'm home tonight. Matthew is at the hospital with Benjamin. I must admit I feel kind of weird not being there. Those of you who know me know that I like to "keep it real" as the kids used to say. I am not overly emotional nor do I get really worked up about things. I love being alone and trust doctors and nurses 100%. But something inside of me just felt hollow as I drove away from the hospital. I have felt it all night. Even as I sat in CiCi's Pizza with Andrew and my mom. I just feel sad and incomplete. I feel at odds and hate having some stuff at the hospital and some stuff at home and even more stuff at my parents' house. I am a mom who thrives upon predictability and routine. So I just feel sometimes like my head is spinning.

Remember the lyrics from "Fresh Prince"?

Now, this is a story all about how
My life got flipped-turned upside down

Yeah. That's me right now. Most of the time I can deal with it. I don't always roll with the punches very well, and well, I guess right now is one of those times.

I remember a few weeks after Benjamin was born I was on a Down syndrome message board venting about this and that. One of the wiser and more experienced moms said, "Angela. You're very stressed and sleep deprived. Go get some sleep." And I suppose that advice rings true right now as well.

We were eating tonight and there was a worker who was quite probably somewhat mentally delayed. He definitely didn't have Down syndrome and may have been quite completely within the realm of normal. But something about him just seemed kind of, well, different. I didn't see anyone be mean to him or anything like that. But he's the kind of kid who probably gets picked on at school because he's not the smartest kid or the most athletic kid or the funniest kid or the cutest kid. He's just a kid with a slightly funny talk and a strange way of addressing people. As he turned around after bussing a table, I noticed that he was kind of chubby around the middle. For some reason I thought of my sweet little baby lying in a hospital bed ten miles away and how soft his skin is. I bet that boy's mother used to hold him as a baby and wonder how his skin could be so soft. I bet she wanted to protect him from every hurtful thing that's even been said to him. But she couldn't. And neither can I. And I know it is part of life and that we learn from life's experiences, blah, blah. But it breaks my heart just the same. And I know it's the same whether or not your kid has special needs or not. Even the prom king gets made fun of at some point and it makes his mom sad. But it just makes me mad that people will make fun of my son for nothing that he can help. And he won't understand why. Right now he's cute and adorable and everyone thinks so. But a day will come when he grows into a boy. A boy with all the physical markings of Down syndrome. He most likely won't be as "cute" by the world's standards. He might walk funny and he'll most likely talk funny. He might be louder than most kids and might say inappropriate things for others to hear. I'll still think he's the greatest and cutest ever. But I know how the world views him because I used to be a part of that world. I saw kids like him and just kind of looked away. They made me uncomfortable. They were often louder than other people in the room. They weren't very smart. And they sounded funny. And I didn't stop to think that those kids are someone's sons or daughters. Or that they are people too. Or that God loves them just the same and sent His Son to die for them, too. So though I think that even though I am starting to get this now, the world will never get it. And there will always be those who view my son as a retard and nothing else. My son. My flesh and blood. Whom I carried inside of me and anticipated his birth for months. Let me reiterate. It breaks my heart. I know, I need some sleep. I'm going to get some. I have one more thing to add to this. I have debated sharing this because I was unsure of my motives. But now I feel like it's time to discuss it. Sorry. It's kind of long.

A person (a family member, nonetheless) who shall remain anonymous who is supposed to be very close to us and who is supposedly a Christian said something to Matthew a few months ago that was extremely hurtful. The worst part was that she didn't even consider it to be hurtful. I was so hurt when he told me that I literally screamed into the phone (to Matthew). I was shaking and I was so angry and hurt that my immediate response was just to shut this person out of our lives forever. How dare she? She doesn't get to say things like that and still hold my son. She doesn't get to have that horrid opinion about my son and get to be a part of his life. Because I'll know what she's *really* thinking behind those fake words and gifts. I emailed a few of my close friends and eventually was able to tell my mom about it. (I tend to save things up and then unload on my mom, LOL.) Most of my friends felt the same way I did...cut her out of your life. Don't have anything to do with her. Don't let her have the satisfaction of being in the lives of your boys. Don't allow her to poison you. But one of my friends gave me different advice. And when I read what she wrote, I knew she was right. I'm sure she won't mind if I copy some of her wise words below. I'm keeping the author of this anonymous but only b/c I'm not sure if she'd mind if I told who she was. I'm sure she'll read this, so if you're out there, friend, feel free to reveal yourself. And thank you for your email. You have no idea how much I needed it, even though I didn't want to face the truth of what you wrote. (I'm leaving some of the email out so the identity of the offender isn't revealed. And just so you know, the person wasn't ANY of you. This person has purposefully been kept in the dark about this blog. I just can't allow her to have intimate access to our lives. Not right now anyway.)

I am so sorry, Angela. I am just so sorry. I cannot imagine a deeper wound. You know the Lord is not going to allow you to hate her. As much as you want to, it will make you miserable. It will eat you up. Now, I am not saying don't set up HUGE boundaries in wisdom but is sounds like she is not a believer and just doesn't have the love of God. I know this is going to sound like a trite Sunday School answer to your problem but I think the only possible way you will ever have an ounce of love for her is if you start praying for her. Make yourself or bitterness will start wrapping around you like a vine.

Honor her out of love for God not because she deserves it.

But, BE angry! Let it out, momma bear!!! BE angry and do not sin. I am angry too. How dare she say something so horrid!!!!!!!! What she said is beyond my comprehension. I kind of want to roll her yard. She just doesn't know the love of God, Angela. She just doesn't know that Jesus Christ is ON DISPLAY through Benjamin. That in weakness, He is revealed. That God has already, in 6 months, used him in incredible ways. Please don't allow this to eat you up inside.

I was just thinking today at church that I need to be more like you, Angela. You are so full of peace and grace and beauty. Do not let the enemy steal those things.

We are free to love. Love her anyway. Ask the Holy Spirit to allow you to love her. Only a believer has the power to do something so insanely hard. Benjamin may be the one who leads her to Christ.

I am so sorry. I just don't understand how someone could be so merciless. Well, I guess I do if they don't know Jesus but still. It is just so sad for everybody.

The thing is, this person does profess to know Christ. I think she just has some messed up ideas. And I am still finding it hard to love her. But I know that I need to. Like my friend said, not because she deserves it, but for God. Because the thing is, none of us deserve love. We are all sinners. We do things that offend God and break His heart. We say things to His children that are hurtful to Him. Yet He loves us anyway. So while I cannot promise to like this person, I am going to try and love her. To let her be around Benjamin some. To let her see God's love through Him. Though I didn't even tell her he's having surgery right now. And I don't want her to know about my blog. And when I heard she was on Facebook I found her name and blocked her from finding me. And I blocked her two friends so they couldn't find me. (Did you know that was an option? Yeah, it is.) And right now, I'm okay with that. I am trying not to harbor bitterness in my heart but it's hard. Because I'm human and that's my baby. But God lives in me and so I need to act on His behalf and not mine. Even though I don't want to. I'll try. Is that enough?

Now an update.

Benjamin is doing fine. I don't have any pictures right now b/c my camera is at the hospital. Plus, I don't really have any new ones. But he is as CUTE and as SWEET as ever. He didn't have any pain medicine today and they started to give him pumped breastmilk down the tube in his nose instead of Pedialyte. He only gets about five to six ounces a day (a liiiiiiiittle bit at a time) but it's a step in the right direction. It turns out that B's surgeon had to go to Pennyslvania b/c her mom got sick. So another doctor took over his case. He was really nice and so we'll see what kind of decisions get made tomorrow. The next step is removing the NG tube that is down his right nostril. It removes his stomach acid until he can do it on his own. Based on the color of the acid and the output, they'll remove it in the next day or two. Then we'll see how well he tolerates the breastmilk down his other nostril. He is having lots of wet diapers, so that's a good sign. But nothing has been said about his going home. I did ask his surgeon a couple of days ago about the poop, and evidently I misunderstood her. He doesn't have to poop before he can go home, he has to eat normally before he can go home. So we'll see. Because right now he's only getting a liiiiiiittttle bit of milk and he hasn't eaten anything by mouth in almost four days. The surgeon did say that she looked during surgery and he didn't have a whole lot of poop in there, which makes sense b/c most of the breastmilk that babies take in is absorbed, and he hasn't had anything but breastmilk in about two weeks.

Time for bed. I wish I could sleep in for real tomorrow. But I still have to wake up at 7:30ish and pump. But I will hopefully be able to go right back to sleep for awhile. Sorry for the depressing post tonight. I'll try and get some sleep tonight so I can be back to my funny self tomorrow. In the meantime, thanks for reading and thanks for letting me be myself.