When You Cannot Walk – A Gait Trainer Faith

Our daughter, Gwendolyn, cannot walk. She cannot even sit up on her own for very long. However, we have a device called a gait trainer to help her practice walking and strengthen her legs and torso. It has a saddle and a wide, chest belt to hold her upright. There are supports to keep her legs in line and rests for her arms. Finally it has wheels that make motion possible.

Last night I was helping her walk. I push her gait trainer along as she moves her feet and holds some of her weight. She is pretty good with her right leg, but she usually lets her left foot drag. Normally, she walks between the foyer and the kitchen, but we tried something new. We walked to her bedroom, which is down a fairly long hallway with a turn. She started giggling as we made it about halfway. She seemed to be excited about the journey. She did a good job of trying to keep her feet moving and holding up her weight. I was so proud of her that I gave her claps and kisses and cheers. Why? Because she did it all on her own? No, because she did what she could. I understand her weaknesses, and I want to help her along.

That made a Scripture come to mind: “For we do not have a high priest who cannot sympathize with our weaknesses, but One who has been tempted in all things as we are, yet without sin.” (Hebrews 4:15). Jesus, our high priest, is well-acquainted with my weaknesses. Weakness, in the original Greek, is astheneia. Helps Word Studies defines it as “an ailment that deprives someone of enjoying or accomplishing what they would like to do.” For Gwendolyn, her mitochondrial disease deprives her of mobility (among other things). Spiritually speaking, my weakness is sin, and it deprives me of the life I really want to live.

Jesus did not come to mock my weakness or to leave me in it. Instead, He came to walk me through it, with the power that He can provide. I certainly have my part to do, but, similar to Gwendolyn, my ability to walk the Christian life is severely hampered. I must have help. Thankfully, the indwelling Holy Spirit is there cheering me on: “In the same way the Spirit also helps our weakness; for we do not know how to pray as we should, but the Spirit Himself intercedes for us with groanings too deep for words” (Romans 8:26). I may not even understand why I am struggling, but the Spirit knows exactly how to set my feet for the next step I need to take.

A gait trainer is designed so that the person using it may gradually walk on their own. Supports and restraints can be removed. The wheels can be loosened from a single direction to allow movement in all directions. However, it may also remain to allow for a degree of movement and freedom that someone like Gwendolyn might never achieve on her own. Paul saw this same dynamic at work in his faith. When God would not remove the “thorn” from his flesh, He told Paul, “My grace is sufficient for you, for power is perfected in weakness.” Paul, instead of wallowing in his weakness, proclaimed: “Most gladly, therefore, I will rather boast about my weaknesses, so that the power of Christ may dwell in me” (2 Corinthians 12:9). Paul is not boasting about sin as his weakness here, yet, I think the principle still applies. It is when I accept God’s help with my weakness that I can fully understand (and proclaim!) His powerful grace toward me.

Disease and weakness are part of our world for now. And, they are actually important factors in shaping our faith. But, for the believer in Jesus, there is an even greater hope — resurrection: “So also is the resurrection of the dead. It is sown a perishable body, it is raised an imperishable body; it is sown in dishonor, it is raised in glory; it is sown in weakness, it is raised in power” (I Corinthians 15:42-43). Gwendolyn and I will both be able to walk unaided in God’s presence one day!

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Not So Fast, My Mito-Replacing Friend

A year ago, I wrote about a controversial three-parent IVF technique intended to avoid mitochondrial disease. I argued that it is both medically unsound and an affront to God, the Author of Life. Many folks disagree with both positions. Some scientists, however, are coming around to my position – at least on the medical side.

Three biologists published an opinion piece in a recent edition of the journal Science (summarized here). They argue that government agencies (especially in the UK) should not be rushing to clinical trials of mitochondrial replacement. The macque monkeys in the original trial have not yet reached adulthood. They suggest at least waiting to see if any problems develop. Their concern? Just as I mentioned last year, the interaction between mitochondrial DNA and nuclear DNA is not fully understood. Mitochondrial replacement may actually cause unanticipated issues.

Now, these scientists do not agree with my theological position. Of course, their identification as evolutionary biologists reveals that we have many differences in our views of this world. While I think MR should be abandoned, they still find the technique promising and important. It just is not ready for a “leap of faith.”  I suggest that these scientists have taken their own leap of faith in accepting evolution as the cause for the beautiful complexity of life. They should reconsider the reasonable evidence for an intentional and artistic Creator.

There is Nothing Like a Daddy’s Love

I see my daughter, Gwendolyn, standing at the top of a staircase. She is dressed in a flowing white gown. Her strawberry blonde hair is swept up into teasing tresses. The aroma of fresh flowers drifts down to me. My heart is about to burst with love. It is her wedding day, and she is about to descend the stairs one last time before leaving her mother and me to start her new life and marriage.

Except that it won’t ever happen that way.

Gwendolyn has a mitochondrial disease. She can’t stand or walk. She can’t say, “I do.” Dresses are not wheelchair-friendly, especially when she wants to pull her legs up. She is nine years old, and it is likely that she won’t live to marriageable age. That’s the brutal reality I’ve had to mourn. But, even as I have let the wedding day dream die, I have discovered something greater from the heart of that dream — there is nothing like a Daddy’s love.

I can’t fix Gwendolyn. I am not going to discover the cure for mitochondrial diseases, no matter how many articles I read or doctors I meet. I can’t figure out what will motivate her to do something new in her therapy. I have no idea what tomorrow might bring for our family. But that’s OK.

There are times when Gwendolyn will only calm down if I take her in my arms and hold her close. She snuggles into my left shoulder just a certain way. At night, she needs me to sing her a hymn or two and whisper, “Daddy loves you” before she goes to sleep. Sometimes when I come home she just smiles and giggles. On fall Sundays, there is no place she would rather be than watching a Steelers game with me (before napping). I can bathe her, change her, brush her hair, and make her do her therapy. I can navigate a wheelchair, make her daily food, start her feeding pump, and administer her medications. I’m Daddy, after all. And there is nothing like a Daddy’s love.

My wife is tired. The daily grind is exhausting. I have a full-time job that pays the bills but demands my energy. Our other
children need Dad, too. I don’t know how we will pay for a wheelchair van or home modifications. I still don’t have that special needs trust in place. Our vacations are tougher, if we can take them. Life could be easier, right? But I am here to stay, for my children and my wife. They need me because there is nothing like a Daddy’s love.

My strength is sapped. I wonder what God is doing. Does God really care about what is happening to us? Then I realize I can climb into my Heavenly Father’s lap. He comforts me when no one else can. Even though I am broken seemingly beyond repair, He can fix my deepest needs. He provides our shelter, food, clothing, medicine, jobs, caring doctors and therapists, a fantastic church, and even occasional respite! If I stop to listen, through all the doubts and fears and questions, I can hear Him. He sings over me and whispers, “I love you.”

There is nothing like a Daddy’s love.

See how great a love the Father has bestowed on us, that we would be called children of God; and such we are. 1 John 3:1a

(Previously published in May-June 2013 FOCUS newsletter. Some editing done here.)

So-Called “Three-Parent IVF” is a Bad Idea, Medically and Theologically, (Part 2)

In part one, I discussed the medical background and risks of a potential IVF treatment for certain mitochondrial diseases. In this final part, I will explain the theological problems the procedure presents.

God is the Author of Life
In Acts 3:15, Peter calls Jesus the Author (or Prince) of life. The word translated as author/prince is “archegos,” which comes from a root meaning “first,” “source,” “head,” or “ruler.” It is used of military leaders, city founders, or originators/authors. Jesus is also the “archegos” of our salvation in Hebrews 2:10 and the “archegos” of our faith in Hebrews 12:2. It is God (through Jesus) who created life. He is still the Creator, and life is His most extravagant creation. It is usurping His position, then, to assert our own right to create life (according to our image and wisdom) as this procedure attempts to do. Quite simply it is overstepping our bounds. The Bible calls this crossing of the line “transgression,” one of its word pictures for sin.

The Scriptures are full of examples of God’s power to give life. From Abraham’s and Sarah’s son born in their old age (Isaac), to Hannah’s son, Samuel, to the birth of John to Zechariah and Elizabeth in their old age, to the virgin birth of Jesus to Mary, to the resurrection of Jesus from the dead, there is no denying God’s miraculous power to give life. Melanie and I have also experienced this miraculous power. After years of infertility, God stepped in and brought life to us — not when we thought it was best, but when He knew it was best. (We really thought it was the worst possible time, but that is a story for another day.) We did not need IVF; we just needed to trust God to be Author of life. He gave us our first born son, Aidan, and our parenting journey began.

God is the Authority Over Life
The additional meanings of “archegos” teach us that Jesus (who is God) is not just the source of the beginning of life; He is also the authority (or captain) over life. The context of Acts 3:15 sheds important light on this. Peter was explaining the healing of a lame beggar outside the Temple. He had been lame since birth, yet God had a marvelous plan for his life. In the name of Jesus, Peter and John brought complete healing to this man to the amazement of all who had seen him lame for years. As Peter explained that the risen Jesus was the power behind the miracle, they proclaimed Jesus (the one the Jews had killed) as the Author of life. This was vividly demonstrated by the indisputable healing of the beggar. Who are we, then, to say that God has no plan for those who suffer from disease? While certainly there is room for us to relieve suffering and offer healing, it is not our purview to try and eliminate suffering as if we were the masters over life. There is great value in suffering that today’s quick fix culture fails to consider. Even in disease and suffering, God is still good. It is in our suffering that we can truly experience His goodness.

God in Our Lives
We have also experienced this first hand. Gwendolyn suffers having an incurable mitochondrial disease. For years, she had dozens to hundreds of seizures per day. Now she does not sit on her own or talk on her own or lots of other things that an eight year old girl should do. We suffer to care for her and provide for her. Her schedule is draining. We deal with therapists and doctors and special education teachers and insurance and medical supply companies and all manner of difficulties (even churches that won’t help). And, yet, we see great good in our journey. Without Gwendolyn, we would never have understood compassion as we do now. We wouldn’t know as much about selfless love. And we would not have known how sweet a personality can shine through even without words without having Gwendolyn. We do not understand all that God is doing, but we have found that He is good. He is the Authority over life.

Our trust of God as the Author and Authority over life was tested again in the birth of Lincoln, our youngest. Science said that we would have a 25% chance of having another child like Gwendolyn. There is no random chance with God, though. We trusted Him that whatever He chose to do would be good and right. Even after a miscarriage, we trusted God as the Author of life. And he blessed us with a great little boy. Lincoln has no symptoms of mitochondrial disease and is a joy to our whole family.

So, this so-called “three-parent IVF” process is medically perilous (part one) and an affront to the Author of life. The researchers should walk away from it now.

SOURCE
archo” article in Theological Dictionary of the New Testament

So-Called “Three-Parent IVF” is a Bad Idea, Medically and Theologically (Part 1)

Researchers at the Wellcome Trust Centre at Newcastle University in England are trying to win government approval for a new in-vitro fertilization (IVF) technique to supposedly eliminate some mitochondrial diseases from being passed from mother to child. Sensational headlines are calling this “three-parent IVF” or “designer babies.” You might wonder why I am tackling this topic on a Bible blog. This is actually is a perfect opportunity for some theology practice. Biblical knowledge has to be applied to the problems of today, or it is just trivia.

Medical Facts
We receive two kinds of DNA at conception. Nuclear DNA (over 3.3 billion base pairs) comes equally from mom and dad. Each cell has one copy of this genetic blueprint. We also receive mitochondrial DNA (16,569 base pairs), but this comes only from mom. Since we have lots of mitochondria in each cell, there are lots of copies of the mtDNA in each cell. According to the best theories of researchers, mtDNA is only involved in the process of turning sugars (or fats) into energy. They do not think it has any impact on identifiable characteristics (height, eye color, etc.).

The IVF procedure under consideration fertilizes an egg from the mom with a known mtDNA defect with sperm from dad. The nucleus of the fertilized egg is then transplanted into the “hollowed out” egg from a woman who has no known mtDNA defect. The resulting child, then, has nuclear DNA from mom and dad and the mtDNA from a second woman. It is true that the mtDNA is just 0.1% of the total nuclear material. It is stretching the facts to declare the second woman a second mother. (However, the legal and ethical issues surrounding the recipient’s notification and donor’s rights would have to be addressed.)

Medically Unsound
Despite the small percentage of total genetic material being replaced, I think this is a very risky medical option that may not even be needed. Most mitochondrial diseases (75%) are linked to something other than mtDNA defects (nuclear DNA, environmental factors, etc.). This procedure would not avoid any of these causes. Even a known mtDNA defect does not guarantee that a mom’s children will exhibit symptoms. One defect, called LHON, causes severe vision problems. But it only occurs in 50% of boys and 10% of girls with an affected mother.

Secondly, researchers do not know every mtDNA mutation that might cause a mitochondria-related disease. A mtDNA transplant would not guarantee perfectly healthy mtDNA. An unidentified defect might be passed along from the donor. Researchers also do not understand all the complex interactions of nuclear DNA with mtDNA. It is clear that in most cases of mitochondrial disease (not maternally inherited), some nuclear genes are involved. Replacing the mom’s mtDNA with another woman’s mtDNA brings the risk of actually causing new problems because of the unknown interactions between nuclear DNA and mtDNA. (UPDATE: This recent research demonstrates how a single gene defect in the nucleus or mitochondria may not cause a problem, but the combination does.)

I admit, I am not a doctor or genetic specialist. However, as an educated layman, there are so many unknowns and uncertainties that the risk seems unjustified. Hurting families should not be test cases, especially when there are clearly superior options, such as adoption or even trusting God.

Personal Background
Why am I singling out this procedure for examination? Our daughter Gwendolyn has a mitochondrial disease. We have had to learn about mitochondrial diseases and genetics. We have had to make decisions weighing medical science against faith. Gwendolyn’s exact genetic diagnosis is still unknown, but it suspected to be autosomal recessive (coming as a combination of nuclear genes from mom and dad). They have not found a specific defect in her mtDNA (which came from Melanie). This type of inheritance implies a 25% risk for us having another child with all of Gwendolyn’s severe symptoms.

In part two, I look at the theological problems with this procedure…

SOURCES
mtDNA and Mitochondrial Diseases
“Mitochondrial Disease Inheritance and Genetics
And three make the perfect baby
“Three-Parent IVF Could Reduce Disease, But Stirs Debate
Ethics debate opens into ‘three-parent’ IVF technique
Mitochondria vs Nucleus

When a Child Dies

Yesterday, Ainsley Higgins, a girl almost 7 years old, died as a result of a mitochondrial disease. Our family has known too many children who have died because of this disease. We are involved with this didn’t-want-to-join-but-had-to community because our eight year old daughter Gwendolyn also has a mitochondrial disease. In addition to the anguishing grief, Christian parents may wonder what happens to their children after death. The Scriptures are clear that all have sinned and deserve condemnation and an eternity without God. But what about children who didn’t have a chance to choose Jesus? I believe the Scriptures do offer real comfort to families dealing with the death (or likely death) of a child. There is good news about their eternal destination.

David’s Confidence

The classic  text on this issue is King David’s response to the death of his first son with Bathsheba from 2 Samuel 12:22-23:

He answered, “While the child was still alive, I fasted and wept. I thought, ‘Who knows? The Lord may be gracious to me and let the child live.’ But now that he is dead, why should I go on fasting? Can I bring him back again? I will go to him, but he will not return to me. (NIV)

David, a man commended by God (except in the matter of Bathsheba and Uriah), is confident that he will see his son in some future afterlife. His surety is not rebuked by anyone, priest or prophet. Thus it stands out as evidence that children who die young have eternal life with God. It is shaky, though, to derive a full-blown theology on such a critical issue from one man’s declaration that is not explicitly echoed by God.

Jesus’ Example

However, Jesus, who is God, does seem to echo this declaration, in opposition to His disciples and the prevailing view of children in His day. Read Mark’s account:

People were bringing little children to Jesus for him to place his hands on them, but the disciples rebuked them. When Jesus saw this, he was indignant. He said to them, “Let the little children come to me, and do not hinder them, for the kingdom of God belongs to such as these.  Truly I tell you, anyone who will not receive the kingdom of God like a little child will never enter it.” And he took the children in his arms, placed his hands on them and blessed them. Mark 10:13-16 (NIV)

Jesus blessed the children. He didn’t condemn them or send them away as unimportant. Mark’s placement of this account is also very telling. It occurs just before Jesus’ encounter with a rich man who asks how to inherit eternal life. Jesus’ response, which challenged the man to sell everything, astounded the disciples. If this man, who claimed to follow the law, cannot be saved, who can? Mark’s inference is clear: children will inherit the kingdom even when the rich and “good” turn away from it. The last will be first (Mark 10:31).

God’s Character

Finally, there is comfort in knowing God’s character. He is just, righteous, and good.  Even if the Bible doesn’t describe the “mechanism” of salvation for those unable to make their own decision, we can trust that God’s decision are just and good. His demonstrated goodness and mercy are enough to convince me that He will do what is right and good. If He would give up His own Son for us, wouldn’t he do everything for our children?

Because of Gwendolyn’s condition, I have thought about this often. Even if she has a long life, we do not know how much she understands. What if she (and others) can never make that decision for Jesus? (Infant baptism to deal with original sin is one tool that some Christians use. As a Baptist, I know that baptism is a sign for believers, not infants.) In Gwendolyn’s case, we often wonder if she has her own communication with God. Sometimes she just laughs for no apparent reason. We have decided that God is telling her jokes. Maybe Gwendolyn and God have a better relationship together than He and I do. No matter what, I trust God with my daughter’s eternal life. David’s confidence, Jesus’ example, and God’s character are enough for me. May He give you encouragement and hope if you are facing those darkest days when your child dies.

At that time Jesus said, “I praise you, Father, Lord of heaven and earth, because you have hidden these things from the wise and learned, and revealed them to little children. Yes, Father, for this is what you were pleased to do. Matthew 11:25-26 (NIV)

More:

How we have hope when there is no cure for our daughter

Brighter days: an interview with Gwendolyn’s mito doctor about the state of mito medicine

A Dad Who Will Never, Ever Leave

I am a pretty easy-going guy. But there are a few things that get my blood boiling. Probably the most personal is “dads” who leave. My daughter, Gwendolyn (8), has a mitochondrial disease. There are no cures, and it will probably end her life early. We know many other families who are facing the difficulties of these diseases. In too many cases, though, “dad” has left. Now it is just mom handling a child (or children) with special needs. Like Gwendolyn, most of these children need 24 x 7 care. That’s a tough job with two involved parents. Some “dads,” I guess, bail out because they can’t fix the problem so they just move on.  It is abandonment.  I won’t mince words – that is evil.

It is probably more personal to me because I didn’t have a dad that stayed either. My parents divorced when I was 7. I saw my dad each summer for a few weeks, but that was it. (We have built a better relationship as adults.) My mom remarried, and my stepdad did stay for awhile. He was an angry man, though, and the relationship was never strong. After I was gone, my mom divorced him. Anger was not his only problem, though I don’t know all the details. The strongest male figure in my life was my grandpa. I am so thankful for the investment he made in my life as a young boy and teen. However, I do sense that “something is missing” because dad was not around.

The Scriptures reveal to us a greater dad – our Father in heaven.  Listen to the promise quoted in Hebrews 13:5:

Keep your lives free from the love of money and be content with what you have, because God has said,
Never will I leave you; never will I forsake you.”  (NIV – emphasis mine)

 Those “nevers” are even more emphatic in the original Greek language, with multiple negatives stacked together. It could be paraphrased as “I will never, no, not ever, no never abandon you.” There is no doubting the intent of this promise. God is a Father who says He will never leave, no matter what.

Can we trust Him that it is true? My experience says, “yes!” When I walked away from God, he did not leave. When I have disobeyed him directly, He did not abandon me. When I shouted “WHY!?” He patiently listened. When I need Him most, I find Him. He has been true to His promise even though I have never deserved it. You can trust Him too!

How have you found God faithful to this promise to never leave? In my next post, I will talk about the results of this ever-present fatherhood.