Impact of a Short Life

. On Wednesday my good friend started living a nightmare, the thing most parents fear. My Facebook status from yesterday morning.....

Good Morning Facebook. Hopefully everyone is well on this day of Thanks. Shortly before bed I read a friend's status of every parents worst fear and of a medical miracle or God's Will. Perhaps it was a testament of a mother's love and connection to her child. My friends daughter was pronounced dead and death certificate was filed. While waiting for her to be picked up , my friend was holding her hand saying goodbye and noticed her daughter to start breathing again. She was resting in ICU before I went to sleep. My friend didn't know what the rest of the night would bring but I'm sure she is   thankful for this extra time God has given her family. Please pray for my friends.

I know this girl and spent a lot of time with her years ago. I started crying when I read this status. I've Read similar things online but I know this family. God does work miracles. Jessica passed away the second time on Thanksgiving and didn't come back this time.

Jessica had cerebral palsy, mental retardation and autism. Most of her problems were caused by a birth accident.

She never walked a step or spoke a word but her life impacted anyone and everyone she came in contact with. Her life mattered to other children in West Virginia with Autism and developmental disabilities. Her mom served as a council member for WV Developmental Disabilities from 1995-2008, she received the appointment from the governor. My friend fought hard for her daughter and helped make changes for thousands of children with disabilities in West Virginia. My friend fought hard to keep children like Jessica from being excluded in schools and from being isolated from other students. Because my friend fought hard for her own child other children will benefit because of Jessica's life.

Jessica's life was brief but will live on in all who knew her.

Hitting Home about Pulmonary Fibrosis

Have you read another blog and that you totally understand where the blogger is coming from? Last night I read a blog and it hit me in my comfort zone. The blog was talking about one of their immediate family members recent diagnosis and how everyone is pulling together. It almost seems like it was yesterday that my stepmother passed away from the same disease her family member is facing. Pulmonary Fibrosis. The prognosis isn't good if you know someone who's living with it. Our family learned to accept the uninvited disease and face the unknown.

Pulmonary Fibrosis can be considered a terminal illness and is always fatal with a life expectancy of 5 years. We had less than 6 months.

Pulmonary fibrosis is the formation or development of excess fibrous connective tissue (fibrosis) in the lungs. It is also described as "scarring of the lung".  (Source Wikipedia)

Symptoms

Symptoms of pulmonary fibrosis are mainly:

Shortness of breath, particularly with exertion

Chronic dry, hacking coughing

Fatigue and weakness

Chest discomfort

Loss of appetite and rapid weight loss

Pulmonary fibrosis is suggested by a history of progressive shortness of breath (dyspnea) with exertion.  Sometimes fine inspiratory crackles can be heard at the lung bases on auscultation.  A chest x-ray may or may not be abnormal, but high Resolution CT will frequently demonstrate abnormalities.  (Source Wikipedia)

In 2009 or 2010 everyone began to notice my step mom was losing weight rapidly and starting to experience shortness of breath. Her activity level quickly diminished. She stopped going to town. This was a woman who went to town multiple times a day or drive 70 miles (round trip) for a deep fried pickle. Or 100 miles for beef jerky. Her sudden exhaustion didn't raise too much concern because she was 80, general tiredness should be expected with aging.

As the shortness of breath persisted and continued to get worse testing began in 7/11. In August she was diagnosed with Pulmonary Fibrosis. The prognosis was bad. My dad, niece and stepsister began providing 24 hour care at home.  On 12/14/11 my stepmother was admitted to the hospital to have higher amounts of oxygen administered. She was quickly put on 15 liters. On 12/20 the Dr felt she should be put on a ventilator, she refused. The hospital wanted her to go to a hospice, she refused. She just wanted to go home. The hospital she was in was 50 miles from home.

On 12/21 my family arranged for a squad to bring her home.  Our family realized she might not survive the trip but it's what she wanted. A couple hours before the transport some of the family came in to be there when the extra oxygen tanks were delivered, three tanks were connected. My step sister got her new furniture (she never sat on) and another decorated a tree. The hospice nurse arrived .

During the transport her oxygen had to be decreased. Again we were aware she might not survive the trip. Once the squad arrived and she was being unloaded her eyes brightened up. You could see a radiant smile behind the oxygen mask as she greeted the family with a wave. She was home.

It took an hour or so to get her situated and for quick training for those providing direct care. My family was shown how to give her morphine during the times hospice wasn't there. We thought we would have a few days so I was supposed to go the next morning to be with her.

The hospice nurse gave her morphine and she started burning up. The doors and Windows were opened. My family put on a CD of Dolly Parton singing "precious memories". Her conditioned worsened but she was alert enough to comfort my step niece. She told her not to cry I'm with Jesus now.

She passed away as Dolly was singing "Precious Father, Loving Mother". I'm bawling as I write this.

Perhaps the ambulance ride took away hours or days from the time she had left but it's what she wanted. Maybe the hospice might have gave her a few days but she just wanted to go home. Why deny her that? She felt she took care of her 9 children including me and some of her grandchildren , we should take care of her. My family took good care of her. Did she suffer? Her golden heart stopped beating before she started completely suffocating. In the end it would of felt like trying to breathe with a boulder on her chest. She made a choice to refuse further medical intervention just to go home.

It breaks my heart knowing a family I only know through blogging will take this same journey my family traveled not long ago. I'm praying for them

Surrogacy and IVF

I applaud the women who give up their bodies to help other couples or singles have families of their own but at the same time I'm developing opinions. Surrogates may find my opinion harsh and perhaps unjustified, but this is my opinion. 

* Surrogates go through lengthy physicals and psychological exams to become an incubator for infertile couples or individuals wishing to start a family. Also surrogates are subjected to background, criminal and credit checks.

* surrogates and egg donors are compensated financially for their sacrifice. But considering the journey starts months before any transfer of the fertilized egg and the "job" is 24/7 the compensation is not that much. Honestly I don't know how much surrogates are paid and it's rude to ask. But in the case of multiples the surrogate's life is put on hold often spending time confined to bed either in a hospital or at home. Time away from their own children often occurs.

* complications can sometimes occur putting the surrogates life at risk.

* As a surrogate your able to pick and choose which couples are appealing. The couples you want to work with and these couples want to work with you. Once a match occurs a business contract is drawn up , an agreement between the IP and SM. Once the child or children is born, the stipulations in the contract is honored. The agreement is fulfilled. The parents are not required to continue an ongoing relationship with the surrogate.  Most blogs I've read about surrogacy is 75% of the parents have maintained a semi-transparent relationship with the surrogate after birth by providing the surrogate with photos and an occasional update. The parents DO NOT have to do this. Sometimes the parents choose to have no further contact with the surrogate after the birth, treating the surrogate as just an incubator and nothing more.

* The child/children you carry as a surrogate is not related to you genetically, thus "not your child" but at the same time after feeling the child move within your womb some attachment can occur and post partum depression.

Before signing the Surrogacy Contract please review the terms of the agreement clearly and if it goes against what you feel is right, DO NOT SIGN IT. Some religion discourages abortion and in some instances selective reductions have occured after IVF. Once you sign the contract and agree to the terms you are legally responsible to follow through .

Before starting surrogacy talk with a reputable agency and lawyer. Make sure the contract is what you are agree to and the terms clearly outlined. That the impending parents terms are clearly noted. Once this contract is signed it becomes a legally binding agreement.

Protect yourself!!!

India and Surrogates

Years ago when I married my husband I knew without a doubt children wasn't in our future. If I wanted kids I couldn't be with him. He had a vasectomy when he was 20 and was electrocuted when he was 26. So I threw away the birth control and started my life with him. Because he has a daughter from his first marriage I am a grandmother, Nathan will be one in October. My stepdaughter suffers from polycystic ovary disease, so getting pregnant  with Nathan was a fluke. She was told she couldnt conceive. The baby is the joy to her life and I can't imagine life without him. If she hadn't conceived on her own she would of remained childless.

When we married assisted reproduction (IVF, surrogacy and artificial insemination) was rather new and expensive, it still is. I can see why married couples (straight or gay) and single men/women wanting to start families go to India. The sad reality is without this option many of these people will be childless. Sure women can do IVF and artificial insemination in our country but it's not guaranteed to work not including the cost is much more than India. Women can spend year after frustrating year trying to conceive the conventional way or with help before going abroad. Things aren't so easy for same sex couples.

Some couples make several trips to India to try for a child using their own eggs , donor eggs and eventually a surrogate. Gay couples provide their semen utilizing both egg donors and surrogates. Because of the change in laws surrogacy will slow in India for single and same sex couples.

The money paid to a surrogate to carry a child for someone else is almost equal to 9-10 years salary for them. The money can be used to buy a home or provide an education for their own children. Their sacrifice of less than a year improved their own family and improved the lives of strangers on the other side of the world.

The worst things I've found so far is some fertility Drs implant 4 fertilized blastocyst in the surrogate to increase the chances for the Impending parents and having to reduce higher multiples. Or terminate the pregnancy if a genetic defect is present in the fetus. Terminating the pregnancy or reduction is sometimes done for the health of the surrogate.

SCI and other organizations have been providing families with their children.

Personal Nature about disparagement

Weeks ago I spoke about disparagement. I would like to write about a more personal thing I am seeing quite often. The language spoken and verbal abuse to belittle a friends daughter by her dying step-father angers me but my husband and I sit back , saying nothing. The girl is highly intelligent, she takes advanced math (Trigonometry) and science classes. She's studying to be a crime investigator. She's on the honor roll but she's constantly called a "dumb bitch" and that she is worthless. She just turned 17 and is a good kid. She doesn't date or go anywhere because she's not trusted. I don't think she's suicidal but teens these days kill themselves for less. During the summer months she gets no relief from the verbal attacks or disparagement. At least when she has class she gets away from the insults.  The definition of disparage if English isn't your first language.

disparage [dɪˈspærɪdʒ] vb (tr) 1. to speak contemptuously of; belittle 2. to damage the reputation of

We feel so bad for her but she's learned to tune him out. She's become a dear friend to us and she knows that we don't agree with the abuse. I talk with her about her classes and what interests her, without belittling because she needs a friend especially since she doesn't get to be a kid. Her sad reality is she's spent every minute of the summer without face-to-face interaction with other people her age. Sure she texts and has Facebook but it is not the same.

When I was her age I got to be a kid. My stepmother encouraged me to get out of the house on weekends. I spent the summer at the pool, went to the movies , roller skating, fishing, camping, amusement parks and got to go places such as festivals, dances and slumber parties. During school I went to state competition that lasted 2-3 days, so I stayed in motels. Chaperoned of course. They trusted me and I didn't give them a reason not to. She was given an opportunity to compete in State Competition to demonstrate criminal profiling and she wasn't allowed to go because it was for the weekend.  There would of been 1 chaperone per 3 students. I spoke up for her but it didn't do no good. He said no. I tried because her childhood is being stolen.

All the little things I got to do created good memories to look back on. I have my scrapbook  pictures and awards. Her high school year memory will be sitting in her room, alone and being called stupid. My husband and I praise her for her accomplishments because nobody else does. The reason why we don't speak up is because if we do she might lose the the only positive interaction she does get.  The mother tunes him out but sometimes she is so miserable she cries. Her situation is not much better. The mother is his wife and caregiver so other than a quick 10 minute trip to the store or a shower she's with him 24/7. He's in the final stage of cancer, so he can't be alone.

Again I'm her relief from the barrage of abuse also. He's starting to make remarks to my husband and myself. Apparently those closer to him can be abused and we say nothing. If we speak up these two special people may become more isolated. Coming to our house is a change of scenery for a few hours.

I worry also once he's gone that she will try to quickly make up for all she's missed and ruin her future. Or the mom won't tell her no. Time will tell.

What defines a Family?

Webster's dictionary defines family as ....

A group of individuals living under one roof and usually under one head : HOUSEHOLD 2 a : a group of persons of ancestry : CLAN b : a people or group of peoples regarded as deriving from a common stock : RACE 3 a : a group of people united by certain convictions or a common : FELLOWSHIP b : the staff of a high official (as the President) 4 : a group of things related by common characteristics: as a : a closely related series of elements or chemical compounds b : a group of soils with similar chemical and physical properties (as texture, pH, and mineral content) that comprise a category ranking above the series and below the subgroup in soil c : a group of related languages descended from a single ancestral language 5 a : the basic unit in society traditionally consisting of two parents rearing their children ; also : any of various social units differing from but regarded as equivalent to the traditional family .

Growing up in the 70s and 80s our family and friends had a traditional family structure. A mom, a dad and kids. Families today can consist of married and unmarried couples, straight or gay, single parents or kids being raised by other family members or friends.

The time and money spent to conceive or to have a child can be surreal for some families while others can get pregnant without trying. It's so unfair what some families go through to have a child. For example I know a drug addict who has three children by three different men and isn't raising any of them. Most likely she will be able to conceive again by having "unprotected sex" and her mom will be raising that child too.

It seems so unfair a crack head can continue to conceive but loving couples in stable marriages and long term commitments ( straight or gay) have to go through adoption, medical intervention, IVF or surrogacy to have a child. I'm all for same sex couples having and parenting children, whether It's through IVF, adoption or surrogacy.

The process some go through is like a carousel, full of ups and downs. Gay men have it harder than lesbians because they don't have ovaries to produce the eggs or a uterus to carry the child. But regardless of the relationship the wait can be excruciating and often heartbreaking. Now the heartbreak is worse since it's harder for same sex  married couples to get the Medical Visas to leave with their children. Exit Visas for IP are no longer available to single or same sex married couples. Exit Visas are only issued to heterosexual couples who've been married at least 2 years. These changes started this year in India. I also heard some countries don't recognize surrogacy so people living in those countries are ineligible to have children born using a surrogate.

The worst part of the change in the law is people who would make great parents are being discriminated against and excluded. Using SURROGATES is a way for married couples whether they are straight or gay and single parents to have biological children if using IVF isn't an option.

Using a surrogate in the United States or other countries that recognize surrogacy is still an option but the cost is considerably more than what's paid to 'rent a womb" in India.

There's no guarantee of the surrogate becoming pregnant on the first try . More often than not it's wait, hope and see. Followed by more waiting. Sometimes it takes multiple cycles to get pregnant and carry a child to term. Sometimes 4-5 blastocytes (embryos) are surgically implanted in the surrogate to improve the chances of impregnating the surrogate . Selected reduction is preformed if pregnancy occured and more than 2 sacs are present. It is unethical to expect a surrogate to carry more than two fetuses.

Ethics is a major dilemma for commercial surrogacy.

I can understand the legislation needs regulated to prevent exploitation of the surrogate mothers but at the same time the women do this willingly to benefit their own family.  The money they make for carrying one child benefits their own children.

I just hope further regulation will include allowing loving same sex couples to continue to have kids using surrogates .These children are cherished and very much wanted.

I'm disabled

The rights of the disabled are important to me. As a disabled educated woman I try to be aware of my rights in the work place. I didn't start my life disabled .After 12 years working in Nursing my back deteriorated from repeated injuries and I required surgery. After months of recuperation, therapy and work hardening, I was not able to return to nursing.

I attended college for four years. I did work after college but the commuting an hour each way further deteriorated my back. Even without using my degrees to get hired I made almost double the minimum wage.

It sickens me a non profit company like Goodwill takes advantage of people with intellectual disabilities such as down syndrome, cerebral Palsey or individuals who are visually impaired.  Why isn't the ACLU helping them? Isn't Goodwill an EOE (equal opportunity employer? What about the ADA (American's Disabilities ACT.?

If the CEO of a non profit corporation is making over 500k and paying a disabled employee so little there's a problem.