can anyone hear me?

I've been debating about writing this post for a few days now but I guess it will help me to get it out. Maybe somebody is listening.

I feel absolutely and utterly alone these days. Even when people are around, I feel like I'm in a black hole. Its not because of me, of course. Its because of my child.

Just when I think we *might* have one part of his problems solved, something else pops up. Or just when it seems like he's doing better, he gets worse again and I am left to figure out, from the million different possibilities, what is going on now. It's exhausting and I'm really, really tired of fighting this battle alone.

There are other women out there who have children like mine, but I don't know any of them personally or well enough to ask for a shoulder to cry on.

Honestly, I think people are tired of hearing about Stephen's problems. I get this impression alot, even from family members and friends.

There are DAYS that go by without a single person calling me or calling to see how we are. We have been attending a church over here who has been praying for Stephen, but no one has offered to help or to just come sit with me for a little while. I would give anything for that.

I also get the impression from some people that they think I am over-exaggerating things or just being dramatic.

For one second, one minute, just imagine, IMAGINE, that your child cannot and will not eat/drink a bottle, for months (I'm not talking a few days when he/she is under the weather). Just think about it. 24/7, all the time, day and night, praying your baby will drink that 3 oz. bottle in his sleep, and praying that he won't wake up and fight and spit it out and everything else. What would you do? Really, WHAT would you do??

If it hadn't been for people on the internet whose children are going through the same thing, I still don't know what we would be doing. If it hadn't been for doctors who *finally* listened after they watched him start choking and being unable to breathe from the reflux shooting into his nasal cavity, I don't know what we would be doing.

I'm reading an awesome book right now, a devotional, for Moms of babies that have medical issues, and I keep reading about all of the people who came to love and support this Mom when her child was dealing with cleft palate (and couldn't eat). The Body of Christ surrounded her.

This is what my heart longs for.

Yes, I have a relationship with Jesus. Even amidst all the chaos, I still manage to have a quiet time at night, though some nights they are very short. Alot of that time is spent crying. Alot of it is begging God to intervene. Alot of it is laying hands on Stephen. Thankfully the devotionals in that book are short. I have a feeling nobody would want to read my journal writings b/c it would be too hard to deal with.

Is that it? Is that why people treat me like I should just put my "big girl" panties on and suck it up and deal? Because its too hard for them to deal with???

I am truly afraid to reach out to anyone because there are so many who have rejected me. I am scared to death that people are going to talk about me behind my back, or look at me like I'm crazy, or just ignore me and never even respond.

I've had people ask if I'm depressed and then recommend seeing a psychologist/counselor. Yes, I am "depressed" if that is what you want to call it. It's called situational depression. I don't have post-partum depression. I am not bi-polar or manic depressive. I don't have crazy mood swings. I love my child. I WANT him in my life. Every day, all day long, I am devoted to his needs and his alone. I don't care anymore if I get a shower or get to wear make-up or whether or not I get to watch the latest sitcom. I am out of the picture for now...Stephen comes first.

My heart burns and aches for my baby boy. Every day I wake up with a horrible feeling in my gut, a fear, that has been there since day 1 of Stephen being in this world. And it is a very REAL fear, not some made-up farce about my baby. I wake up every day and pray and ask God to let this be the day he is healed. For him to want to eat. For him to start doing things developmentally like he should be. For him not to reflux.

I am not sure anyone realizes this, but when Stephen refluxes, he is in danger of choking to death. He is on an adult dosage of Prevacid and had SURGERY to correct this problem, and it still is happening. When he wakes up congested, and he isn't sick, I know its because during the night the acid got into his nasal cavity. One minor mistake of him breathing this in can lead to pneumonia or him literally not being able to breathe. This is what I go through every day and night. Is is any wonder that I'm completely worn out?

I know people are sick of hearing about it. I'm not blind and can see Christian brothers and sisters leaving the prayer group/event on Facebook. There are people in my family and Paul's family who are known in their community for being leaders in the Christian faith. Not a single phone call or visit from any of them. It hurts.

I am a seminary graduate and have been on mission trips all over to give everything I have to people/children who have nothing. My husband is a Chaplain-in-training who gives his all for his fellow soldiers and has been in a war zone more than once.
I know it is easier for everyone to just roll their eyes, walk away, and pretend nothing is going on. But we ARE here. I am here. I am scared. I am tired. I am lonely. Can anyone hear me?

Can the Body of Christ please step up???


HH6 said...

Oh my goodness I had this same title for my latest blog. Even though for different reasons but life sure does feel like that sometimes.
I wish more people would take time for others. We are all here to help one another not hurt. I'm so sorry you guys are hurting. Even though I'm a few thousand miles away I'm here for you. I'm always praying for S.

I think your feelings are very natural given your current situation. Don't let others steal your joy!!!!
You have a beautiful family and our heavenly father who adores you all.

HIS daughter said...

Wow girl. Wow. Definitely praying so very very hard! I am so sorry things are so hard for you. My email is casefamily@rochester.rr.com if you ever need to just vent or specific prayer feel free to contact me!

Carly said...

I'm no longer "facebooking," so I haven't been able to read your updates and whatnot, so I'm glad that you posted this here. I've been praying for you and Stephen, and I wish I could help more.

Anonymous said...

I cant even imagine what you are going through... I think people are too, way too, busy and dont feel they have time for someone elses burdon, not an excuse but sure tends to be the reason... doesnt make it right... I appreciate your posting this so I can pray for your family, that beautiful boy. I have changed blog sites so I have tagged you on my new one so I can follow with updates. I am praying!

AlyceB said...

On behalf of the church, I'm sorry. I'm sorry that you have not had the support that we should be giving you.
I pray that people that can physically/in real life minister to you will step up and do so.

Anonymous said...

Love never EVER fails.

Stacia said...

My heart aches for you and Stephen and I so wish that there was more I could do for you other then pray, something that I do everyday.
I like to hear your updates as they help me know how to pray for your family; I know I'm several hours away but we should get together sometime, yes I'm willing to drive to see you so don't think that it would be a problem, I want to help even if its just to lend an ear!