Saturday, April 28, 2007

an honest answer

How are we doing? That seems to be the question lately from everyone.

Well I could give you my tough girl answer and say "It's all good. We'll find a way." And quite frankly, I tell myself that often because I don't know another way to get through the day. You have to remain hopeful, right? Well I try, I really do. But it sure is getting harder and harder these days.

Here I am on a Saturday night filling out more government paperwork, while also running in and out of Max's room because his oxygen level keeps dropping. Not a rarity in our house, but I suppose I am just not feeling as emotionally strong to handle it tonight.

I am angry. I am frustrated. I am scared for next week, next month and next year. How am I going to make this work?

I don't understand how we got to this point. A few years ago I was building our businesses to great success. I worked day and night to ensure long term financial stability so that we would be ready to have a family. I did everything you are supposed to do.

Yet...here I am today. Now because of marrying the wrong man and giving birth to a child with special needs, I am completely crushed financially. Is this really how the system is supposed to work? Seriously?

1) How in the world is the mother the only responsible party for the child? I am astounded by the court's ruling in our divorce...truly astounded. (That's putting it mildly.) Is that really how our nation views the importance of children? And if I cannot take care of him (which is the financial situation they have put me in), what do they want to happen to Maxwell? Or does anyone even care? Here is this sweet lil' boy who fought for his life and now fights each and every day to accomplish the simplest of milestones. He truly is a miracle. Shouldn't HE be the priority here?

2) And why isn't the system more supportive to families with special needs? As my friend Sarah has frequently commented, why are we punished for giving birth to "less than genetically perfect" children? If those in power walked one day in our shoes, they would certainly have a different viewpoint.

While we certainly feel honored to be the chosen parents of these amazing, unique children, we also have an excessive amount of emotional, physical, and financial stress on a daily basis.

Being a parent of any child is demanding, no question. But throw in constant medical appointments, medications, treatments, daily therapy appointments, research and intense home therapy...and that is a recipe for stress, exhaustion and frustration. On top of all that, the family experiences major financial concerns because one parent must stay home to manage all of this craziness. (And what in the world should a single parent do?)

Oh and let's not forget that anytime you have a moment to think (usually driving to/from the various appointments), your mind is racing about "Am I doing enough? Have I researched all the new therapies? Are we missing something? Should I push/not push for that surgery, that specialist, that medication? Will my child ever speak/walk/live independently? What will happen to my child if something happens to me? Who will take on this responsibility?"

This is the life of a family with a special needs child...especially a child with developmental AND medical concerns.

I totally get that life isn't always fair, and I am completely ok with that. But come on, is this the best that we can do? When someone is in desperate need...at no fault of their own, do we simply let them fend for themselves? Do we not have a role in helping one another? And what role does our government play? I certainly don't have all the answers, I just know something needs to change.

In the past few weeks, I have become quite familiar with the "system," and it is frightening. The lack of support and amount of bureaucracy is ludicrous. It has been an incredibly humiliating and humbling experience, and it has certainly changed me forever. I don't want to become a bitter person, but I'll be honest...it is hard to remain positive when you feel the world is crumbling around you.

I see this stress happening to so many other families with children with special needs. It is incredibly frustrating. Again, WHY should families basically be punished for having "less than genetically perfect" children? Shouldn't we be lifting them up and supporting them in every way? I am so proud of what my fellow special needs families have accomplished with their children...but should their journey be so difficult?

So that is my long answer to the short question of "how are you doing." I am frustrated and worried for the future. I am angry and disappointed that the court didn't treat us fairly in the divorce. I am upset with the system and the lack of support. But most importantly, I am trying to focus on finding answers to the very complicated question..."how in the world am I going to possibly make this all work?"

15 comments:

Crystal and Eva said...

HUGS AMY!!! I know the frustration and I am there right now as I am sure you know. I know how hard it is with a married couple so I am sure its way more diffcult with one. I think about you and Max a lot and you are alway in my thoughts and prayers. I know when we all meet at the confernece its going to be a flood of emotions coming over us all to be around people who know, understand and care.
Hugs,
Crystal and Eva

Diane and Alex said...

AMY, what can we do? I am not the smartest cookie in the bag, but I will be willing to fight for these children. Can we fight the legislature for help for these kids? Can we stand in front of the capital? What can I do because I am willing to do whatever it takes to get help for families like yours. Life is not fair and I have been through my share of disappointments, but I want to help. I really, really do. This is ridicious that anyone has to face financial loss with a child that can't help being ill.

I am sure there are many on here that feels like I do. I am ready to do whatever I can to make this work. I will write hundreds of letters. I will even go to Washington.

We love both of you and wished life was a little easier for the two of you.

Love,
Diane

MadAnne said...

No Amy, this is not how our system should work. However, politicians are beholden to lobbyist with the most cash. Parents like you are too tired, too busy, too poor, to travel to Washington. Even with the best politicians it eventually becomes all about re-election. Ironic when you think about all the people/money involed in pro life and pro choice groups. Maybe a here and now group. I'm so sorry for all you are going through. Our country needs to do better.

Mark and Jaye said...

Dear Amy....Firstly, hugs to you...you are an amazing woman and I don't know how you do it. Quite frankly, just knowing you throught this blog humbles me. I feel truly blessed to watch Max's progress...
As was stated...what do we do? How do we help?
Hugs and prayers...
Jaye

Vicki said...

Hi Amy, I hate hearing of all the struggles. Your words are soo strong, keep the spirit. You can go through this feeling deeper in the hole after every hit or stay optimistic and above it (what can you do?). I think you have the best attitude for the situation and you are doing the best job. Good luck and I am thinking of you and Max. I love watching the videos on your blogg...looking forward to more to come, he is a ham. Keep up the good fight..miss you! Hope I could help, don't know what to do...

Ang said...

Amy,
Hugs and More Hugs and then More hugs. I love you and am sending prayers up for you and maxwell. That powers be put the right people in place for you and maxwell.

Love you.

ellen said...

wow i allways new was ahrd for u never would say it wastn and its coz of that idiot that its harder it shouldnt b so there should b two to do the load i love u hugs ellen

Leslie, Arlin & Katie Kauffman said...

Amy, I wish I had some words of wisdom or some magic answer for you, but I don't. It's definitely hard, what all of us parents with kids with special needs go through. I don't think anyone understands that totally except us--not even our family and friends, as hard as they may try. And it definitely has to be SO much harder as a single parent--especially when there's a deadbeat dad involved who takes no responsibility for his own child. Shame on him--and shame on the system that lets him get away with it.

Hang in there, and take it one day at a time. And take any and all assistance you can get. It will all work out somehow.

Hugs,
Leslie and Katie

Diane and Alex said...

Amy and Maxwell, I want you to know that I wrote to every person I possible could to get you and others help. Who knows, maybe I did good, maybe not. Whatever it takes, I am going to do it for you.

Amy, just relax and take care of your precious son and let those who are able, go forward for you. You don't need any more on you. Know that we care and we are here for you and the others.

Love,
Diane and Alexandra

TechKate said...

Amy - My prayers are with you for support and comfort. You're going through more than anyone should have to go through, and you're doing it single-handedly.

I think this might be random, but I know a lot of people would love to help you. Do you have any support of Maxwell support fund that people could donate to?

Or, share via your blog what might be helpful on a day-to-day basis (i.e. gift cards to Target, etc) so your devoted readers know how to help. -Katie

RD5202 said...

Amy, you are amazing and so is your beautiful son. Each night both of you are in my prayers.

I have become the caregiver for my elderly mother (eventhough I have siblings who could and should help but do not)and I know how difficult some days can be, but you are a role model for everyone. And a voice for Max.

Be proud of all the two of you have accomplished.

Hang in there!

Kirstin said...

I wish I could make thing better for you. I am sending you hugs and positive thoughts. What can I do for you????? Please know your in my thoughts and on my mind.

bjglenn43 said...

You and Max will make it work. You guys have made it this far, and I know you will find every way possible to make it work for both you and Max. =)

Pearl said...

Gosh, Amy. I feel so helpless watching from the sidelines and not knowing what to say or do that would help you. Just know that you and Maxwell are in the thoughts and prayers of many, many people out there, a lot of whom you've probably never even met. And rest assured, too, that each and every one of us is not only cheering for you and your miracle baby to overcome the obstacles in your path, but we are individually and collectively humbled by the strength of character and genorosity you both show every day of your lives. You've both come so far, and it's okay to be scared for the future. But have faith that God or the Universe or whatever higher power you believe in is in your corner and will watch over you and guide you through the hard parts. And enjoy the cheering section you'll run into along the way. We're all pulling for Team Amy & Maxwell!

Mike said...

Amy, I really empathize with this evolution you're making in your views about society. This is exactly what we went through (me especially). It's very easy to talk theoretically about how this is a free country and individuals take care of themselves and blah blah blah, until you've become one of those people who have done everything right and STILL can't get ahead. Then you start to realize that something is wrong. At my old job, we talked about the broken social covenant in America. It used to be that if you worked hard and played by the rules you could get ahead, but now you work twice as hard and the lazy people who cheat are profiting at our expense. People have forgotten that everyone in this country who is prosperous is successful BECAUSE of the American system that we all pay into and support (public schools, a strong economy, financial supports, etc.). So I think Americans should be obligated to provide their equitable share, which is different than an "equal" share.

Where are the supports for our children? This is the richest country in the world and you can't even work or have any time to yourself because you have to play 24-hour nurse, therapist, AND mother (AND father!). You're right, it's terrible. And I don't blame you for being angry about it.