Thursday, January 15, 2009

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.

22 comments:

The Soldatke family said...

Angela,

Delurking here! I've been following your blog for awhile. (I actually don't know how I found your blog. Possibly a comment on Mckmomma's blog???) Anywhoo... I love reading your blog and I love your perspective on all kinds of things!! I too, have a baby about Benjamin's age. He was born with congenital hydrocephalus. I just had to tell you that your post hit home hard tonight. I often feel the same way as you do. About how I used to look at kids with special needs, and how that's changed! How God is working in my life! How I am so sad sometimes when I think about his future. (Crying right now just thinking about it!) Thanks for keepin' it real! I wish sometimes I could post things like that; but I haven't been able to. Anyhow, feel free to check our family out when you have a chance.

Jill
soldatke6.blogspot.com

Lisa said...

Angela...
You continue to amaze me. You have an ability to share what you are feeling in a way to make me see things in a new way. I am so glad to have been able to get to know you better through this blog and, more importantly, get to know Benjamin. I hate to admit that I saw children with special needs the same way- not judgementally, but sort of looking the other way. You are helping me to see them differently. Your story has affected me more than you know.

Benjamin is your son for a reason. I think you both will touch lives in very very special ways.

I am sorry that you were hurt by your "friend." That truly sucks. You are a big person to handle it the way you are.

Get some sleep :-)

Kristen said...

Oh Angela. There aren't words, really. Because you're right... There are people in the world who won't understand, and who will break your heart through their actions and their words.

But equally true... And what warms MY heart... is knowing that Benjamin, regardless of what he sees and hears throughout his life, will have the unconditional, equally-heart-breaking (in a GOOD way) love of his momma. In times of sadness or frustration, there you (and Matthew and Andrew of course) will be! Benjamin is rich in so many ways.... In the ways that, at the end of the day, matter most.

I hope you get to sleep in tomorrow...

Kristen

Diana said...

I know you will be up about now pumping so I hope you catch my comment before you continue the beauty rest. I just put small fry down for her "early" "early" morning nap. It is so hard for us "outsiders" to know what it is like on the inside. When we think things are hard; we should really be thankful that things are really never that hard. THANK GOD I am so blessed. Religion is a tough subject in my house. Paul lost about 95% off his faith when Michael died. I feel like I am fighting a hard battle trying to put some kind of faith in morals in my home. I myself only know enough about God to have faith. I so badly would like to get myself and family involved in a church, but it is very awkward doing it alone. It is also hard when I don't feel comfortable leaving my kids in a nursery. Anyway your amazing faith through all your trials gives me hope. I too was one of those people who felt awkward and uncomfortable around "special" people. Not because they weren't kind, nice, or pleasing to be around. Just because they were different. Unfortunately I think some part of human nature makes us uncomfortable around things that are different. The birth of Benjamin has changed me too, because I realized totally "normal" people are blessed with "special" children. Those kids have Moms and Dads that look down on them sleeping teary-eyed just like I look down on mine. They love their kids just as much if not more than I love mine. God has put all these children here for a reason and purpose. Benjamin may touch more lives, warm more hearts, and turn more people to God than 50 other people. You be strong Mama Bear and protect those cubs. You can call me anything you want, but don't mess with my kids!!! Protect your kids and your heart from those unkind masses (and person). I personally would be way to straight forward with the person and let them know exactly what I thought of their insanity. That is why you are so much stronger than me. LOVE YOU!!

Stephanie said...

oh, girl. I just saw I missed your message on facebook. I hope you are sleeping now.
You are smart to go home and sleep.
You need it. I bet you will feel better when you wake up.
I am praying that God will give you treasures in this darkness and riches in the secret places.
I couldn't help to think about the Down Syndrome boy that was on Life Goes On and how capable and smart and funny he is...http://en.wikipedia.org/wiki/Chris_Burke_(actor)
You have to look at this.
They said his parents loved and nurtured him and he thrived way beyond any expectations. Now he shares inspirational speeches!!!
So, just keep loving Benjamin. He will thrive. He will always be cute and may never be loud.
He is created in the image of God and has a specific purpose here just like the rest of us.
I love you so much. I know it is easy for me to write these 'happy' messages that probably drive you nuts, but I just want you to be encouraged.
Keep being amazing. You keep the bar HIGH for us.
Steph

Stephanie said...

ps The verse I quoted is Isaiah 45:3. Write it on your forehead.

Heather said...

We love you, A. We love you, we love Benjamin (just the way he is and he is freaking cute!) and we love Andrew and Matthew.

You do whatever you need to do to find peace in your heart for the wretched soul who said those things about B. I, on the other hand, will gladly raise a sword to anyone who tries to hurt him, by words, deeds, or thoughts. You just let me know.

I hope you got some good sleep last night.

Dawn said...

I found your blog through a comment you made on MckMama's. I am CAPTIVATED by your baby boy! He is absolutely beautiful. I spent some time catching up on your story and just want you to know how inspiring you are.

It breaks my heart as well that a "friend" would speak about your son without thinking. I too am a Momma Bear and have to resist the urge to lash out when it comes to defending my kids. I LOVE what your other friend had to say about not allowing bitterness to creep into your heart. I know that you can't love this person on your own, but CHRIST in you and His power most definitely can! And what a testimony it will be. I will pray that you will find the strength to love her in Him, because He *IS* Love. I also love what she said about being angry. She quoted the verse that says to Be Angry! And then to not sin. What wise advice, and what a good friend to give you such advice in the midst of such yucky circumstances.

Thanks for being real. I'm truly grateful to have found your blog. I'll be praying for you and for Benjamin's quick recovery and release from the hospital. Blessings!

attorneymama said...

Angela, I can honestly say that I do not and probably never will understand your faith. Not to say I am not glad you have it, because I know what strength it has given you over the last year. But, I don't get it. I don't get how you can believe that there is any reason to allow that woman in your life, much less embrace her. I cannot fathom it. That being said, I am glad you have found peace in the situation.

Perhaps if I had faith I would not be quite the angry person that I am today. So for that I am glad that you have faith. I however will remain very very angry for you, just in case I am right and you are wrong and there is no greater reason to forgive her. ;)

Benjamin will face challenges in his lifetime, but I truly believe that his challenges will be lessened so much because of you amazing strength and the support around you. When you were a kid, there was no such thing as the internet. A parent of a child with Down Syndrome had only those around them for support. Often people who were ignorant. Contrastly, you have not only your amazing family and friends IRL but an entire internet full of support. Benjamin will have the same love and support as he grows into a child and eventually a man. He will not be limited to his immediate surroundings. The world will be his to explore.

I hope you got a good night's sleep and are feeling renewed today. We each have moments, days and weeks of weakness. But, in the end you are strong and will keep on keeping on.

Sara

Juliet Jackson said...

Angela,

You love for this woman is such an amazing testimony to your love for Christ. He can and will take those feeling away! Just remember how Jesus has talked about not only loving those who love you but loving your enemies! He will guide you through this.

I love you so much and want to thank you for the example you have set for all of us! I can't wait for you to come over. I'll make sure I have plenty of sweet tea! Love, Juliet

Jennifer Talley said...

Angela,

You continue to amaze and inspire me and I too was one of those people before marriage and my family! But since having my precious babies, there is this bear that takes over me when they are talked about or made fun of...that's ok, you are there to protect him from harm and hurt! Let God shine and kill her with kindness! Love ya girl...Jenn

Casey said...

I love you Angela. I know I don't know you, but you are such an inspiration. I admire your patience and your grace, and most of all, your faith. In times that I doubt Christ's love, people like you restore my faith. Not only in God, but also in Humanity. And Benjamin is perfect, and I don't see how anyone, especially someone who has been graced by his presence, could feel that way about him.

Anonymous said...

Angela,
I know how you feel. It is so easy to love those that are nice to us. As I've shared in bible study with y'all before, I have some family members that are very hard to love, but I know if I don't show them the love of Christ who will. It is not always easy, and I have to pray hard daily. I know the Lord has his hand on my family, but I pray things could be different and by the grace of God, they will be one day.

I'm praying for y'all and that you will get to go home soon. I hope you've gotten some rest.
Love, Selena

Mary Jo said...

Oh Angela - all I can do is to thank you (again) for continuing to be real with us and yourself. By sharing Benjamin with us you are changing how we see the world. By being realy about the process (ALL of it) you are opening our hearts more and more. I cried earlier this morning when I read your post and then I cried now when I read these comments. You are such a gift to so many people. Benjamin is such a gift to so many people. Thanks you, really thank you - MJ

Lindsey Erickson said...

Thanks for your words - especially about forgiveness and loving the unloveable as we, the unloveables, are loved. What a reminder to me to put away bitterness. Every night when I sing to Evangeline, we sing the first and last verses of Amazing Grace. I love being reminded every night of the truth of Romans 8:28 in the verse: "The Lord has promised good to me. His Word my hope secures. He will my shield and portion be, as long as life endures." I don't always understand what the "good " is that He is doing in my life, but I know that the picture is way bigger than myself, and I am thankful that He is the author who entered and enters in to the story.
Much love to all of you.

Kara said...

You are an amazing person, thank you for sharing this with us. Life is so hard, and I can't imagine being in your shoes, but your faith will get you through. You are in my prayers. Hugs

superjanel said...

Long time reader, first time commenter here. But I had to let you know how much I appreciate your honesty and your outlook. You and your family are amazing and the faith you hold is incredible. Thank you for sharing Benjamin with us.

Susan Massoud Farley said...

Oh sweetie, I am crying after reading the post about the family member and her horrible, hateful words. I'm selfishly glad you did not post what exactly she said b/c I don't think I could take even reading such things about precious Benjamin. Through the tears of that story, though, I am smiling reading these comments- some from people you do not even know! Surely that is a strong testament to the witness you and B. are of God's love.
Sure, there will be people who "look the other way" when they see a person with DS but THINK of how many people who have ALREADY been touched by Benjamin and he is not even one yet! Just cling to that when you feel discouraged or worried about his future.
Your attitude toward that "family member" and the way you live show the spirit behind one of my favorite Bible verses- Micah 6:8- Do justice, love mercy, and walk humbly with your God!!

lesliemarie said...

Your post made me cry! But not in a depressing sort of way. Because what you're speaking about has always been really close to my heart. Someday I'll do a post on it. For now, you should know that I was the kid in elementary school who only got checkmarks by my name and had to sit on the sidewalk during recess because I got in fights on the playground and in the classroom when my peers made fun of special needs kids. (Otherwise I was totally a model student :) My mom was a pediatric PT, and those kids were her patients and MY friends. I took it very personal when someone mistreated them. I pray that Benjamin will have a Momma Bear friend when he goes to school that will get in a fight on the playground to defend him! ;) For now, you go girl! Keep on being momma bear and writing your perspective...it just might change somebody's heart. I hope you got to sleep in some this morning!

Amber said...

B is beautiful because he's nurtured beautifully.
You've shared your frustrations about this...person...with me before, I believe. And I know with her being a constant in your life, it's got to be so difficult. But you're smarter, and you're better, and Benjamin will see how lovely his mother was when he gets older. He will never stop being adorable, and he will never lose his admiring fans (mostly women, that lucky dog)!!

Anonymous said...

Wow.. I'm not an emotional kind of girl but after following your blog for the past 8 months I am reading these comments and just sobbing. You have changed how I see people. I know you never asked to be the poster child mom for changing the world and how they see Down Syndrome children and families of special needs children in general, but you have embraced God's challenge with grace, humility and amazing faith. I am inspired by you, Andrew, Matthew and Benjamin daily. You don't know me but you have changed my life. Thank you.

Christia said...

Angela,
I seriously have so much respect for you. You help me to be a better person, and you make me strive to do better. I love you and B so much! And I agree 100% with Sara.

Love you!