Friday, September 18, 2009

In One of Those Moods

Some times I catch myself staring at Daniel.
Looking at his eyes, watching his every movement.
Loving him with every ounce of my being.
Wondering where I failed him.
Struggling with the guilt that perhaps I did something along the way that caused him to have his problem.

Kicking myself because we can't give him the best of everything out there, medically speaking.
I research and research. Not just at the beginning but all the time, looking and hoping to find something that will help him. But the sad results are that even if I did, would we be able to get it for him? Because all the treatments out there, you don't know if its going to help, or if you're going to spend every cent you have in hopes to just realize that it just didn't help your child, but its great for others. What the next thing to try?

We've thought about fundraising. But times are so tough for everyone, that it would be hard. Then there is the time that is involved, that would take away from time needed to care for Daniel.

Things just suck sometimes and as I have stated before, I am NOT a good scheduler, so adding that into everything else...

I think when you're given a special needs child to love and care for, you should also be given an extra babysitter, a schedule keeper, an organizer, and a financial assistant! Anyone wanna work for me for free?!?!

Just in one of those blah moods when I have that stamp out so I can use it on my forehead
"FAILURE!"

10 comments:

MeghatronsMom said...

Must be going around. I feel your blah mood here too. Just wanted to let you know you are not alone. I am so blah I can't even bring myself to bl(ah)g.

Eyeglasses & Endzones said...

I totally understand your blah mood too!! We all have those days, RIGHT???

Well I just had to say that I will say a little prayer that your mood lightens!

Anonymous said...

Snap out of it Melanie, you're not superhuman.....noone is! You do the best you can with the resourses given to you and the limitations placed on you. Accept it for what it is. Go out and soak up some vitamin D from the sun....that should raise your spirits....light deprevation reaks havoc on the body and mind.

Katy said...

You work so hard for that little boy, there is no reason why you should feel like a failure.

I think that we all have about five therapies that we'd like to try and can afford--and that can be tough--picking the ones that are right for you and then not feeling lousy about all the ones you didn't pick.

Ellen said...

I know exactly how you feel. Maybe not today, but I've so been there. But, like Anonymous (!) and Katy said, you really do your best. So try, try, try to take some satisfaction in that. Maybe there are other treatments out there, but like you say, who knows if they will work. The love you give Daniel and all the other things you do are helping him grow all the time.

HUG!

Wherever HE Leads We'll Go said...

You are not a failure. You are an amazing mom. You love Daniel and you have done so much him. He has accomplished so much and you should celebrate that (I know that you do). We all get in those moods when we feel like we haven't done enough. I am not sure that the feeling ever completely goes away. You are not alone. And did I mention that you are NOT a failure?

Anonymous said...

Melanie, You are not a failure! You are a good mom! And what makes you a good mom is that you take to heart and recognize that you can't give your son everything even though you desire to do so. If you weren't such a good mom, you wouldn't care that you couldn't afford an alternative therapy or that you can't squeeze in even one more therapy without pushing yourself over the edge. I think that all good mom's feel what you are feeling pretty often. What makes the difference is that you continue to go on and you continue to fight for everything Daniel needs despite the urge to run screaming into a dark closet and sit and cry on a daily basis. Daniel is doing amazing things and he is doing them because you and your family are so strong and you work together to give Daniel all he needs and his smile is proof positive that you are doing a great job!

I too am a mom of a child with PMG. Nathan is very similar to Daniel and about 6 months younger. I look at your site as often as I can (every few months) to get inspiration and to continue to have faith that all of this hard work pays off. I felt compelled to leave a comment this time (I haven't before) because I wanted to let you know that you are not a failure, not in Daniel's eyes and definitely not in mine. You are a great mom trying to do all the best for her son. I admire all you do for Daniel and hope that you give yourself a 15 min. break to relax, regroup and pat yourself on the back. You are amazing and Daniel is so lucky to have you. When I feel like I can't go any farther, I pull out some of Nathan's pictures, I think about how he has progressed in the last six months. Is he doing what other "almost 4 yr olds do" no, but he is doing way more than some docs ever thought he would do - ever! And he is not even 4 yet. He will do more, I know it won't be an easy journey and I know it won't be as fast as I'd like, but I know he'll do it when he is ready. And he'll be smiling the whole while. That is what really matters!
Good luck to you and Daniel. I look forward to checking in on you again soon.
Annette

AshleyS said...

BIG ((HUGS))!!!!!

Tina said...

Melanie, I agree with the other comments (other than the "Snap out of it" one). We are not failures, but this sure is hard!

I appreciate the honesty of this post and am glad you shared it with us. It helps me to feel normal to know that a woman like you -- who does so much for her son & who is a shining example to the rest of us -- also has days when you feel discouraged, overwhelmed, or even guilty.

I frequently find myself obsessing about finding a specific therapeutic toy ... only to find it and have Ryan completely ignore it. I think it's probably normal. There's so little I have control of in this situation, and I feel compelled to do all that I can do to help him succeed.

I know from reading your blog that you will "snap out of this" and you will be the best Mom to Daniel in spite of (or perhaps even partly because of) your down days.

I want you to know that your blog has been especially beneficial to me as I have been making my way through this journey for the past 14 months. I appreciate you, your family, and especially Daniel. You give me hope, light, and knowledge.

I hope that on your hard days that somewhere in your heart you will still remember that you are a blessing to Daniel and to many people! May God's sweetest blessings be given to you and your family!

Tina

CRUSTYBEEF said...

You are an amazing mom..and it's okay to get down on yourself, but you did absolutely nothing wrong..matter of fact, you were Given Daniel because the angels knew how big your heart is, how strong and stubborn you are, and how compassionate your soul is--

Do you happen to have a caring bridge page? It's not like you need one more journel to update on, but sometimes their community is so helpful. (it helped us when my brother's accident occurred back in may)
Daniel has a gentle soul, an old soul, and I would gladly contribute for a fundraiser.
If 1000 people gave $1 each,... :)
Hang in there, okay?