Womb Donations and Other Fancy Stuff: Reproductive Disability (AKA Infertility) Part 2

Continuing with my series on reproductive disabilities I came across a remarkable article. A Dr. Mats Brannstrom, a professor of gynecology and obstetrics at the University of Gothenburg has developed a surgical technique, which involves the transplant of a healthy donor womb in to the body of a woman whose womb is not healthy, and the subsequent use of IVF treatments to implant an embryo into that womb. One Swedish woman has already given birth to a little boy and two more are expected to deliver soon. While I marvel at the amazing advancements of medical science I am saddened by the implication I see in such procedures and what it says about our views on children. This is a very complicated, expensive and invasive way to go about having children. As I will talk about in a future blog the costs for IVF can be exorbitant. What would motivate a couple to do this instead of adoption, which is often actually far less expensive and certainly less invasive? I would never presume to know what motivates people but in my own life, having considered IVF and come to certain conclusions about it, and having talked to couples struggling to conceive one motivator that continually pops up is the need to “have me own child”. This is the main factor I would like address. As a strong pro-lifer I champion the cause of the movement, however, I have one major grievance with the movement and that of the pro-death movement. I hardly ever hear adoption discussed thoughtfully from either group. Now I know that the pro-life movement is in full support of adoption. My problem is that many couples will go to great medical lengths to have children because they feel that adoption is out of reach. Why? it is expensive, it takes a long time, and often in many states the laws are so against adoptive couples that many who try give up. I think that there needs to be more education for couples dealing with reproductive disability on adoption, resources, help, etc. There are many misconceptions about adoption and unfortunately minority couples are less likely to consider adoption than Caucasian couples. There are many groups that we found in our adoption journey that help with costs. I think the mindset that we must “have our own” also needs to be addressed. As the mother of an adopted son I cannot imagine loving or feeling more bonded to a child than I do mine. He is mine in every way. He may not look like me, share my DNA, or come from my womb but he is my child. Thinking about how God has adopted us into his family can help Christian couples struggling with this aspect of adoption.

One thing that has angered me in the adoption process is the absolute ridiculousness of the process and how every state is different, some states don’t even really allow it, some have so many loop holes that couples get sacred, in some states adoption isn’t even an option for young girls to consider so there are no children to be adopted. The adoption process needs drastic reform and the pro-life movement needs to focus on this for adoption to be a real alternative to abortion. I spoke with a couple recently that had been trying to adopt from New England for several years and gave up. I asked them why it had been so difficult and they said that in their region girls who get pregnant are counseled right away to abort, they never even consider adoption placement so there were never any children to adopt in their region. The fear that a child may be taken is another stumbling block for couples. In New York for example the time a birth mother has to take her child back is about a year, and after that there are so many loop holes a couple constantly fears that their adopted child could be taken. The system is seriously complex and broken. Rather than be concerned about children it is often about money and legal matters.

It is my belief that the pro-life movement needs to challenge the current adoption process, push for reforms, and work to make sure that young women consider it as a wonderful option for their child. In a brief search for adoption reform movements I found many that are trying to reform against adoption and to make it even more difficult. The discussion needs to be more at the forefront of the Pro-life and anti-abortion movements. With all the horrible abortions performed everyday it would be wonderful to see these children placed in loving homes instead. I would love to see an Adoption Movement started to educate couples, young women, reform the process and help provide support develop and end Planned Parenthood and other abortion clinics for good.

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This is Vincent the first baby born through a womb transplant.

Confessions of a Very Unwilling Hannah: Reproductive Disability (AKA Infertility) Part 1

This was a blog that I did not want to write. Ever. Why? Call it pride, call it shame, call it lack of self-confidence. My wonderfully supportive husband balked at my hesitation to share my experiences and assured me that it might help people like me. So I decided to go for it. The title of this blog references the mother of the Prophet Samuel from 1 Samuel Chapter 1. Hannah had a wonderful husband who loved her very deeply yet she desired to have children. Scripture says that the Lord himself prevented her. He had something wonderful in store and a plan for her life. Although she trusted the Lord as we read her tale she was not always rejoicing about it or strong, or happy about her circumstances. I can relate to Hannah. I think most women dealing with infertility can relate to her. You see having Turner’s Syndrome means you are definitely infertile. So infertile in fact that no medical treatments are an option. Being diagnosed at a very young age I was always told this but as a child, and later as a teenager I didn’t really think about it. After all, having kids was far in the future. After several years of marriage and the story was very different. My husband and I knew we would adopt and for years we prayed about it and then forgot about it, being busy with work, ministry, travelling, etc. However, after about 9 years of marriage God pressed upon us that the time had come. That was when the “fun” began. I will share our adoption story in another blog. What I want to share now is the inner struggle that infertile women go through that their friends and family don’t see. I’m a pretty average person so I am making the assumption that my experience is pretty average and similar to most people. I want to say upfront that I have the best friends and family in the world. They are wonderful, supportive, and always pray for me. Dealing with infertility however, there are things we never share or let those close to us know and so we hinder our loved ones from really ministering to us, believing that we are being strong. Particularly as Christians, we feel that we must pull ourselves up, trust the Lord, and give it all to God. It is not always that easy. If you have friends that are living with reproductive disability, as I will call it, let me share what is really going on that you will probably never know. Especially if she is as stubborn as me. Don’t let her get away with it! She will thank you later, I promise. The stages I think cycle through life and are actually very similar to grief. In fact it is a grief, grief for the loss of children she will never have. I have no particular order to these stages, as we are all different.

  1. Anger. There is part of her that is very angry. Angry with God, angry at herself, angry at pretty much everything. Grief often manifests as anger. If she is short tempered, snippy, or irritable that is probably why. Make her talk about it. She really wants to, she is just probably not able to vocalize it and may be embarrassed that she is angry knowing she shouldn’t be. Christians after all aren’t supposed to be angry.
  1. Depressed. If she is a good actress you may never know this one but trust me on some level there is depression. You may have a wonderful time together but she may go home and cry for hours and never tell you. Make her talk about it. She really wants to but again she may be embarrassed. Christians after all aren’t supposed to be depressed.
  1. Guilt. Infertile women often feel very guilty. They may feel guilt that something is wrong with them. They are not able to do the one thing woman are supposed to be able to do. This affects their relationships with their husbands in very strange and often illogical ways. They may feel that they have done something wrong in life and are being punished. They may feel guilty for and ashamed that their husband “got stuck with them”. They may worry that their husbands may leave them or they may want to leave themselves to give their husbands a chance to find someone who isn’t reproductively disabled. Satan likes to inject all sorts of evil lies into the hearts of woman and this area is the worst and easiest for him to play with. Talk to her about it! She really wants to but is probably incredibly embarrassed about this one.
  1. Medical treatments. These treatments are often financially draining, invasive, sterile, and humiliating. Ask her to explain everything to you. (In a future part I will share our thoughts on this topic and what God has taught us).
  1. Being withdrawn from friendships. It is often very hard for a woman dealing with infertility to be around pregnant friends and friends with children. There is this very strange duality that tortures her. She is at once overjoyed for her friends and loves their children, and wants to go to parties and baby showers yet on the other hand she can barely hold the smile she plasters on because she just wants to burst into tears the whole time she is with them. Be patient and don’t let her get away with it. She wants to be part of your lives but it is hard. Be sensitive but be open with her that you know it is hard and you appreciate her being there.
  1. 6. Bargaining. Just like Hannah did they will often bargain with God and make promises to him if he will only give them a child.
  1. Adoption. Adoption is the most wonderful thing that a couple can do. The day we adopted our son was nothing short of miraculous and we are awaiting a second one. There is something you should know about the process though. It is long, it is hard, it is sometimes humiliating, and it is financially draining. Imagine a complete stranger coming to your home assessing your finances, looking at your taxes, reading references people had to write for you, doing invasive criminal background checks, questioning your marriage, questioning your discipline policies, questioning your friendships from high school, and your grade point averages and then deciding if you and your home are deserving of children. Needless to say it can create a lot of resentment and humiliation. You often get angry and think how unfair it is when you see so many who have tons of children and abuse them, don’t care for them etc., and no one questions it but you have to prove yourself in every way possible. Then you wait, and wait, and wait, and wait. Never knowing when it will happen or if it will happen. Although it is a wonderful thing the process is draining. Unless you have gone through it yourself you cannot understand the way it can make you feel at times. So if your friends are adopting be aware of what is really going on. Make her talk about the process in detail and how it makes her feel and how it affects her marriage and her husband.

Even after adoption the feelings never go away. Part of the reproductively disabled woman will always feel different, lesser than others, bared from a life experience that comes so naturally to others. As you pray for your friend I encourage you to pray with her. I wish I had been more open about my need for people to just pray with me for all these feelings. My pride and shame kept me from being open to them. I knew so many people were praying for me but it is different to have them pray with you. Also, just to cry with your friend. Through the years dealing with infertility I cried everyday, alone, except for once. It was freeing to just have someone to cry with who didn’t say a word, no friendly advice, just as Job’s friends sat with him in silence for a time. As infertility continues to increase, for many reasons, which I will share in a future blog, it is important to understand what goes on in the heart of the infertile woman. You will encounter more and more as time goes on. When you read 1 Samuel 1:1 Hannah displayed many of these feelings. She was provoked to anger by the other wife, she wept bitterly and a lot, she bargained with the Lord and I’m sure felt guilt. As Christians in the West we are taught to subdue these negative feelings and to suppress them because they are bad. This, I believe, keeps many women from reaching out and getting the support that they need to properly deal with them. I hope this helps give you some good insight if you are not infertile and encourages you that you are not alone if you are.

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The Problem of Baby Gammy

Last night I read two articles that really disturbed me. It disturbed me for several reasons and probably not for the same reasons that most people would be. The first article was from the Australian Herald Sun the second was from News.com.au. The story goes like this: An unnamed Australian couple had gone to Thailand to have a surrogate mother (young and from a poor village) “gestate” their baby for them. I am sure due to implanting multiple fertilized eggs, as per IVF procedure; the Thai woman was pregnant with twins. Being “responsible” parents the couple obviously had prenatal tests done on the pregnant woman and learned that one child tested positive for Downs Syndrome. They pressured the woman to abort the child. The articles were not clear as to why but the young Thai woman did not and gave birth to a “healthy” girl and boy with Down Syndrome who is suffering with severe heart   issues as most children born with this syndrome often do. The couple took the baby girl and went back to Australia leaving the boy with the Thai woman to fend for herself. The Australian embassy staff in Bangkok have helped raise money and many angry Australians are donating to help with the surgeries.

What disturbs me about this story is the hypocrisy of the reporting newspapers. They are nothing short of wishing this couple crucified for abandoning this baby boy because he has Down Syndrome. Further more they had the most scathing comments about the couple seeking the abortion of that particular child. Forgive me for going all Matt Walsh but where will the hypocrisy end? As I researched the statistics on the Internet most medical sites agree that 9 out 10 pregnancies that test positive for Down Syndrome are aborted. Let me say it again 9 out of 10 babies with Down Syndrome are murdered inuetero all the time. Where is the outrage for these babies? Don’t get me wrong what this couple did was unconscionable and horrible but they only tried to do what millions of people all over the world do every day. They tried to have the baby aborted when they found out it had Down Syndrome. Why are the newspapers that defend abortion for this very reason everyday so angry with these parents? I’ll tell you why because the baby was born and they could see him for what he was; a human being. It is the great hypocrisy of the pro-abortion movement. All of a sudden when a baby is born or wanted they get all upset but had the baby been aborted not one of them would bat an eye.

I am not ashamed to say that I am very much pro-life and detest the very concept of abortion. It offends me like no other act in the world ever could. I am offended by the media that so carelessly defends it and by those who promote it. In my worldview it is murder and will always be so and you can see how I could feel so strongly about it. But this particular blog is not for that discussion. My issue is the way the media have been so hypocritical about this couple’s actions. They wanted it aborted like 9 out 10 other couples. For whatever reason the “unwanted” baby was “allowed” to be born and they didn’t want it end of story. Why are they being demonized by the very people who would applaud them had they aborted it to be “merciful” and save it from a “difficult” life of disability. This couple like many others couldn’t or weren’t willing to take care of this child with a disability. On what moral ground does the media have to criticize them? Are they any different from other couples who give their children up for adoption because they do not want to or cannot be parents? What makes a parent? Bernard G. Prusak wrote an interesting and thought provoking article I recommend you read entitled: What Are Parents For?: Reproductive Ethics after the Nonidentity Problem. I disagree with much of what he says but it challenges the idea of parental obligation and responsibilities to their children, especially in light of using medical procedures such as IVF and surrogacy. If the media was to be consistent in its worldview it would understand that this couple is no different than millions of others around the world who are not willing to even give birth to a child with a disability but because those children are aborted, and not really “human”, no one cares and they can feel good that it was an act of mercy. There is a war on people with disabilities and it is being promoted and defended by the pro-abortion movement. I am working on a future blog in a few weeks detailing more about this war and where I believe it is headed.

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The 40 Fruit Tree

Usually I try to keep this blog about education and disabilities but I read an article and watched a TED talk that gave me pause to think about the wonder of the Church. At Syracuse University artist and art professor Sam Van Aken has developed the 40 Fruit Tree. He has actually been able to design and create a tree that grows over forty types of stone fruits such as peaches, plums, nectarines, almonds, etc… The process is painstaking and takes 5 years per tree. When his “working tree” is about one he begins grafting a few “chips” or small budded branches from other fruit trees into a small incision on the “working tree” and lets it heal through the winter, then he prunes and cares for the branches as the grow. He continues the process, documenting and color-coding where each branch has been placed. By creating a timeline of when each fruit branch blossoms he is able to create a specific design of color on each tree when it blossoms. The Bible makes many references to Christians being grafted into the vine and being made part of the body of Christ, His Church. Romans 11:19 says, “then you will say, “Branches were broken off so that I might be grafted in.” Just like the 40 Fruit Tree Jesus has cut us from our old life and grafted us into His Church our “working tree” What a beautiful array of colors and fruits our gifts, callings, abilities, and cultures are, each branch yielding a different type of fruit and creating a tree that displays so much unity in diversity. We may be different types of fruit (cultures, abilities, and giftings) but we are all stone fruits (our unity in faith in Christ). Like Professor Van Aken carefully crafts, cares, and prunes his trees Jesus likewise cares for and prunes his Church. It is painful and a long process but what an amazingly wondrous tree it creates. Check out the website here http://www.treeof40fruit.com.

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Helping Parents With Special Needs Children

I do a lot consulting with parents who have children with disabilities and special needs. I find that more than giving advice on educational programs and interventions parents need counseling and emotional support. I spend a lot of my consultation time listening to the struggles that they are having and trying to be an encouragement to their emotional and spiritual needs. Our culture doesn’t let us share the deep hurts and difficulties we are having, especially if we are leaders in ministry. Many parents want to cry and share their anger and sadness but often feel that they don’t want to be vulnerable or that no one will understand anyway. Friends and family often try to help with advice on what should or should not be done, with the best of intentions, but often may say things that are hurtful, discouraging or uninformed. Parents with special needs children are often isolated. It is difficult to attend social functions, to get out for a date, or to do the daily things that need to be done for their other typical children much less be involved in ministry themselves. Other people often feel uncomfortable around them and pretty soon they stop receiving invitations.

I would exhort people who have family and friends with special needs children to encourage and lift these families up. They may not express the needs they have so here are some ways you can give practical meaningful help.

1. Realize that they may not be able to come to you so make a point of going to them.
2. They need time away so offer to babysit and learn what you can about their child’s needs.
3. No matter how many times they may cancel, turn down an invitation, or have to leave early keep inviting them.
4. Just listen.
5. Pray with them. This is so important. It is wonderful for people to say “I’m praying for you” but it is so meaningful to have someone pray right there with you.
6. Recognize their child as being made in the image of God and treat them like any other child.
7. Be patient with the child’s behvior that is out of the ordinary. Parents often feel embarrassed by this in front of others. This is part of their disability and the child can often not control it. Be helpful if a parent is dealing with difficult behavior while you are with them. If there is nothing you can do, silently pray and wait patiently until the episode is over.
8. Remember that these parents are tired, stressed, concerned for their child, embarrassed at times and feel very left out of normal life.

I hope these suggestions help you to minister to those in your lives who have children with special needs. they are a forgotten group at times so lets lift them up and “supply what is lacking”.

Welcome to My Mosaic Life

     Hello and welcome to my blog site. I want to introduce myself and give a little background about me and what led me into the field of special education. After the first year or so of my life my parents were very concerned about my lack of growth. I was never ill but they noticed that I wasn’t growing at a normal rate and I was very small for my age. I was diagnosed at first with “failure to thrive”, which in retrospect is funny because other than being small I was very healthy. Doctors ran every test they could and in the end they did genetic testing and were shocked to find that I had Mosaic Turner’s Syndrome. Turner’s Syndrome can basically be described as a missing piece of the 23rd chromosome (the sex/gender chromosome) in females. Mosaic Turner’s Syndrome means that only a certain percentage of my cells are affected but not all of them. The reason doctors were surprised was because normally females born with TS have many moderate to sever defects and disabilities such as, asthma, congenital heart defect, no neck, lung problems, maybe some intellectual disabilities, short stature and infertility. The only clue that I had TS was my short stature. Throughout my life though I have always been short I have been incredibly healthy, strong, and academically astute. I used to run and hour everyday, I lift weights, and have excelled in academics.

     I never thought of my self as having a disability until I recently. You would never believe the challenges in life that a woman who is very short encounters. My whole life people have teased me, come up with names for me (most of the time good natured), not taken me seriously, tried to intimidate me, and treated me as if I have no voice or much important to say. Reading some research on the subject I discovered that people do indeed have a tendency to subconsciously view short people negatively. Who knew? I have always had to work harder to prove myself and make physical accommodations for most every day tasks. So I understand what it is like to be different and to struggle to fit in to a “normal” world.

     One thing that concerns me in the area of disabilities, and I will talk more about this in future posts, is that if prenatal testing had been more advanced and pushed on my mother, as it is today, I may not have been born. My mother probably would have been given a “worst case” scenario about my prognosis and would have been encouraged to terminate her pregnancy. I am living proof that doctors don’t now everything and although you may be able to detect a “possible” genetic anomaly you can never predetermine the extent to which a person my be affected. This issue is where my heart lies, making people aware of the issues surrounding bioethics and disability.

     So that is a little bit about my journey into special education and disability issues. I have a special place in my heart for families of individuals with disabilities. In my education practice I spend almost as much time counseling and listening to the struggles of parents as I do working with their children.