I have been having a lot of emotional days recently. Nothing in particular has "happened", I think life is just catching up with me...and I'm a big fat wussy. I have been trying recently, to come to some sort of conclusion about my life. Some sort of resolution on who I am now, compared to who I used to be. I think I've finally come to the realization that I can be who I was, without being the victim I used to be. It's hard. It's emotional, and unless you've been there, you have no flippin' clue what I'm talking about. The resolving of this "stuff" in my head and heart is messy, and it has created a big, fat vulnerable hole I'm trying to figure out how to fill.
In an effort to post a blog AND not depress anyone with the way my mind has been working (even though for the most part, it's GOOD, not dpressing! )- I thought maybe I'd post a couple of links that simply struck a chord in me.
The first is a CBS News story concerning the debate surrounding testing for diseases like Krabbe disease within a more complete panel of Newborn screening. Most of you will never have to stop and realize that while all of the happy "I just had a baby" celebration is going on during your hospital stay- your newborn has been tested for a number of diseases. This testing ensures that babies who have whatever your particular State tests for, get early care, intervention and attention. SOME diseases are curable, if discovered prior to symptoms developing. One of these diseases is Krabbe disease. Krabbe is a Leukodystrophy, just like Brittany's Alexander Disease. One of the many differences is that Krabbe can be treated, while AxD cannot. Untreated, Krabbe children usually do not make it to their second birthday. They are blinded, immobile and unable to eat and have many many breathing issues - requiring a vent - until they eventually pass away. It is painful. Krabbe prevents them from having enough protection on their nerves. Treated, Krabbe children may still have some handicaps, but do not need to perish.They do not need to live a short life filled with suffering.
Why does this matter to ME, when my daughters illness cannot be treated? It may not be curable, but if I knew Brittany had AxD at birth, it would have saved us 5 years of seeking a diagnosis. A lot of her health problems, personality issues and behaviors would have made sense, and she would have had access to an IEP at school MUCH sooner than she did.So, not only would I know my child was ill ( which, is a double edged sword, I admit ), but I would have had a direction in which to turn for help, rather than struggling for the past 7 years.
In short, my daughter already has the shit end of the stick- I could have been prepared and informed enough to make things easier on her. And yes, I do feel that is worth the cost of Expanded Universal Newborn Screening. If it was your child - and it very well could be, it would be worth it to you. If this were cancer or another more well known childhood illness we were talking about, there would be no question as to acting proactively. There would be no wondering if the expense of testing would be worth saving some, if not all children with cancer. This obscure set of diseases and the children they effect deserve the same chance.
How can you help? Learn about expanded newborn screening, and after doing so, hopefully you will also feel as I do, that it is simply something that NEEDS to be done. Maybe contact your representatives and ask where they stand on expanded NB screening. If they aren't behind it, inform them why it is important. Encourage them to educate themselves and take a stand and help get this screening mandatory. If that is all too much, I understand. Then spread the word. You are SO powerful, in such a simple way - and you, like most, probably don't even realize it. If you tell 10 people just by posting this blog, or the link to the news story, or a make simple statement that you support UNBS- you will have brought attention to 10 people - with the potential of also educating everyone they post or mention it to.
Please read the story and watch the video above.Also, visit Hunter's Hope and learn about Krabbe, Leukodystrophies and most importantly, Universal Newborn Screening.
"Hunter’s Hope was established in 1997 by Jim Kelly and his wife Jill, after their infant son, Hunter (2/14/97—8/5/05) was diagnosed with Krabbe Leukodystrophy, an inherited fatal nervous system disease." - Hunter's Hope website.
Jim Kelly, some of you will recall, is a former quarterback for the NFL's Buffalo Bills.
Click the Team Brittany logo to learn what NBS testing YOUR state provides.
The second link, is a Mortifying Disclosure written by the mom of a special needs son. Completely different situation, completely different family, completely different disease - Same end result. I share this woman's view on being home and caring for her child. I am at a point where I am trying to move past caring what others' opinion is of why I stay home and care for my children. I shared this woman's feeling about the importance of "being there" prior to even knowing I had an ill child - after the chaos that my family experienced this past fall and winter with Brittany, I am more dedicated than ever to being here to raise my children. My fiancee works two miserable, low paying ( compared to a lovely white collar career ) jobs he hates, in order to make ends meet for our family. The ends, despite his dedication to working until he drops, do not ever meet. Brittany receives Social Security Income as well as Aid to the Permanently and Totally Disabled from the State. Our ends still do not meet. When my ex-husband and I decided to have a large family, we made a significant income. Our ends met. Always.We were able to meet our needs as well as have a very full life. We had a business, five brand new trucks, loads of business equipment, employees we supported and a brand new Suburban. We had a jet boat, 5 snowmobiles, 4 ATVs, a hot tub, an apartment house and did whatever he wanted. I was a PTA mom. A girl Scout leader. I volunteered in my childrens preschool and lead their parent organization all the way to State level meetings. I chaperoned most of the field trips for 3 different schools. I was the secretary for the Snowmobile and ATV club my exhusband and I started locally. My kids all played sports year round. I ran my husband's office, published a newsletter and volunteered in the community. I provided childcare for others.We took regular, week long trips to the lake and went tubing, fishing and snowmobiling. I didn't stress about holidays - I hosted them. We didn't worry about having enough money for gifts and holidays. I hosted my inlaws weekly for dinner because they didnt take care of themselves and suffered strokes and diabetes. I waxed my damned eyebrows and got haircuts. We had whatever we wanted. Unfortunately, we also had a good dose of domestic violence. We also didn't have an appreciation for having as much as we did. I had a plan to leave when my youngest (who was 18 mos at the time ) went to school full time. That way, I could work full time and still be there when they were home. Some things - violent things - escalated without warning. I left. I -WE - lost everything.My exhusband went to prison after assaulting me one last time, so hasn't paid child support since we were seperated, even though he has been out of the pokey for multiple years now. My kids lost their recreation, ability to play sports and unlimited possibility of wardrobes, toys and day trips. They even lost my husbands side of the family because I left, and Mark chose to engage in activity (assault, stalking, harassment, escape from custody, etc )that landed him in Prison.Apparently, my kids were disowned because I decided to ensure my own safety and report it when he committed crimes against us. After all of this loss, we gained Peace of Mind. I am sorry and regretful to my children for the loss of our lifestyle. I am not, however sorry that I am still making it a priority to be home for them. The healthy ones as well as the sick one.I am also not sorry for the addition of their new brother and sister into their lives, even though it means we have a bit less as a result.I AM sorry that between the trauma that went on after my seperation, Brit's illness and a few other things, including depression and PTSD, I have all but squandered my parenting opportunities for the past few years. I did what NEEDED to be done. I covered their immediate needs, I cooked, I cleaned, interacted. I attended the functions I had to - but didn't have the emotional gumption to extend myself into any of the activities I used to.Now that I do not parent alone and have another, equal half to count on for support, I am trying to get back into the swing of things. I am trying to remember what it's like - and how I managed to do all of those things I used to do for my family. I'm trying to heal a whole bunch of hurts.I want to be the house that all of their friends come to. I want to be involved with their schools. I want to take them to story hour and chaperone their trips and all of the other things that create memories.I need to be here when things like "Last Fall" happen with Brittany's illness. I don't owe anyone any apologies for any of that. I don't owe anyone an explanation why my job is here with my family. I only owe my family the very best of me. I owe them an equal trade. TLots of money and comfort items and activities traded for safety, integrity, attention and the focus I used to have when my life was easier in many ways. It's not the same for every family. I don't place the same amount of value on material items that many do. I place value on a solid family life. Unfortunately I cannot provide both. I know the cost of the material things to my family and myself, and I'm willing to compromise in order to be here.
No one looks back at the end of their life and says "God, I wish I worked more".
I know not everyone feels this way -and I know not everyone is able to do what I'm doing if they want to. I don't judge - I don't feel my decision is best for everyone, but it's best for us. And "us" is all I can take care of.