Patrick Talks About Arthrogryposis

https://www.periscope.tv/penneymaried/1YpKkpLpdDmGj?

Patrick and I did this Periscope for Arthrogryposis Awareness Day on June 30th. Patrick tells about how arthrogryposis has affected his life.

On Having a Full Quiver

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I guess I’ve never really written on my blog how I feel about whether people should use birth control or use natural family planning or let God decide how many people to put in their family. It is a controversial topic. But since I have used the theme of “sharing our journey”, I will now describe my journey to the understanding and reasoning that I have now about limiting or not limiting family size.

When my husband and I first got married, we were naive about everything but thought we knew everything, like most young newlyweds probably are. We talked about children before we got married, of course. I said that I wanted at least 3 children, since that was what my family had, and I figured that worked out pretty well. Gary said he would like to have an even number (for whatever reason), so we said, ok, we’ll have 4. And that was what I was shooting for. Sort of.

It was never a real concrete decision that I thought I would never change my mind about. It was just a nebulous idea of how our future might go. After all, I knew that I couldn’t predict the future or control it.

I have a tendency to let God lead, and I follow. That means my ideas and opinions have changed about a lot of things. And I have learned about things that I believe the Lord led me to, when I wasn’t even interested at first and had no clue that there was an issue. Many things that our society as a whole accepts, I was led to reject and do the opposite.

The number of children our family was to include was one of those things. I didn’t know that God really cared one way or another about this issue until I started really seeking Him about it after I had Patrick, our third child, and he had some birth defects. I was devastated, of course, but the Lord helped me through the guilt and confusion and fear as I pressed into Him and trusted Him to take care of Patrick and to give us a good quality of life in spite of his “limitations”. I have told Patrick’s story in the posts under the category Patrick’s Testimony.

One of the big questions I took to the Lord was, “Should I have another baby?” We went through some genetic counseling, and the doctor told us that it was probably just a fluke, and the chances of us having another baby with arthrogryposis were very slim.

I still needed to hear something more definite from the Lord about it. So I kept praying. I felt like He told me to talk to a slightly older woman at church who had 5 children, and she seemed to have a good head on her shoulders, and she knew about things that I didn’t know about living a more natural, healthy lifestyle. So I went to her house and asked her how she felt about birth control and the matter of limiting the number of children, etc.

She shared with me about natural family planning. Her husband actually kept a chart of her ovulation, so that they were both involved in making the decision of whether to have another child and when. I highly respect their wisdom and their partnership in praying together and discussing these things and communicating so intimately with each other. They were both open to having another child at the time I talked to them. He was as accepting of the idea as she was.

I took these ideas and meditated on them and ordered a book from Focus on the Family about how to keep track of my fertility. I read the book and learned enough to be able to tell pretty well when I was fertile. I kept praying for God to show me His heart about this whole issue of how many children I was to have.

Soon after I had Patrick and started his therapies and surgeries, etc., I found out I was pregnant with number 4! Patrick was 10 months old when I got pregnant again. I learned some things about the birth control pill that I found troubling. I also learned about the history of birth control and Margaret Sanger and found out that her reasons for pushing birth control were mainly about getting rid of black people. I prayed about birth control. I believe that God revealed to me that it is not His will for His people to use these forms of birth control. Most of them actually destroy an egg that has already been fertilized or keep it from being able to implant after being fertilized. In reality, it is aborting a pregnancy that has already been started. I believe that God causes that life to happen and we don’t have the right to destroy human life, even at that stage.

As I prayed about it more, the Lord led me to the line of reasoning that goes like this. Who makes people? God, of course. Who knows what people should be in each family? God, of course. Who knows how many people should be in each family? Yep, we all know the answer to that. Who should decide how many children we have and which children would be in our family? I came to the conclusion that it was God’s place to decide all of these things, not mine. He knows the future. He has the spirits of new people in heaven that He intends to send to earth, and He knows which of these spirits are supposed to be in my family that He wants to put in my and my husband’s care. He knows these things. My husband and I don’t. When it comes right down to it, number doesn’t matter. The heart of the matter is letting God have His way in our lives.

So what we basically ended up doing is letting God lead this area of our lives, just as we let God lead every other area of our lives.

I believe that God gave us just the right children and that He is pleased with our acceptance of His will for our lives. I could not be happier. I am so glad to have each and every one of my children. I am happy to still have young children side by side with my older children. My older children have learned so many good lessons from helping with their younger siblings. The younger children are so happy to have their older brothers and sisters to play with and learn from. We are proud of our big, happy family. We are close-knit and each of them loves all of their brothers and sisters. Of course we are not perfect. But I believe we have a higher level of family satisfaction than many other families that I have observed.

As I said before, it’s not the number that matters. What matters is obeying God.

God gave me ten children. I feel exceedingly and abundantly blessed to have such a full quiver.

That’s my journey.

I praise the Lord for my full quiver.

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The Question I Never Wanted to Hear

I  remember a day long ago when Patrick was about 6 years old (he’s 17 now) when he came to me and told me that Jordan and Shawn were carrying buckets of water and he tried to carry one, too, but he couldn’t.  I asked him how full it was.  He said it was about half full.  I told him to dump out some of the water and try to carry less.  He said he did, but it was still too heavy.  I’ll never forget the sorrow in his voice when he said, “Mommy, the other boys can carry those buckets real easy.  How come it’s so heavy for me?  Why can’t I carry things like they can?  I’ve tried to do other things they do, too, and I just can’t do them.  Why is it so hard for me?”  Then I know what the problem was.  He was discovering the limitations that arthrogryposis had put on him.  My heart was broken.  I never made a big deal about the arthrogryposis because I didn’t want him to feel like there was something wrong with him.  I wanted him to try things without thinking, “Oh, I can’t do that because I have arthrogryposis.”  And it had worked really well.  He did everything on time and better than my other kids.  He was a daredevil and rode a bike sooner than his siblings.  He did tricks and jumps on his bike!  But he had discovered that his biceps were not as strong as theirs.  And he was asking me why.

 

I told him about the arthrogryposis and how the doctor said he didn’t have as much bicep muscle because of it.  But I told him that he could still work on it and try to build as much muscle as he could.  I told him to start with lifting the bucket with nothing in it and gradually add a little bit of water to it.  He wasn’t sure if he could even lift an empty bucket, but I told him to keep trying.  I told him that he was already a miracle in what he was able to do.  That the doctors had told me that he may never be able to feed himself or brush his teeth or groom himself or walk or ….  He had proven all of that wrong.  He was able to dress himself, feed himself – everything – all of his life!  So I told him that God would help him with this problem, too.  That we were praying, and we believed that God would heal him completely.

 

Just look at him now!  He can bench more weight than his older brother!  And he has a powerful punch. God is an awesome God.  He is our healer.  Patrick tells everyone he meets what God has done for him.  God is willing and able to heal if we press into Him and believe His promises.

Miracle at the Gym

Patrick, our third child, was born with arthrogryposis. He couldn’t bend his elbows. Fibrous tissue had grown over his elbow joints. He had not bent his arms or moved them much in the womb.

He also had a club foot. The Achilles tendon was really tight so he couldn’t bend his foot up and down.

The first pediatrician I took him to was concerned that he may never be able to walk or stand or feed himself or groom himself or just about anything.

I took him to therapy, and the therapist was not very supportive. She didn’t want my other 2 kids to come to therapy sessions, and she tried to get me to stop nursing him and wanted me to start feeding him solid food before I thought he was ready for it. There were many things that I did not like about taking him to therapy all the time.

We kept praying for his healing from the time he was born. One night I got a word from the Lord through Benny Hinn that “Patrick is going to be fine”. Soon after that the therapist said that she thought he had plateaued and that he wasn’t going to get much more range of motion than he had.

I was fine with that because it meant we could have our lives back. I never took him back for therapy after that. We had 2 surgeries on his club foot when he was less than a year old.

Later we had to get another surgery on his foot because it had started to turn in when he was about 5 years old.

The first surgeries would have taken care of the problem but the arthrogryposis caused his Achilles tendon to be stiffer than it should be, and it caused trouble in the alignment of the bones in his foot.

So we had those medical interventions for him when he was young.

But ever since then he’s just been growing and developing with the Lord’s blessing on his health and His healing touch ever present.

He walks and runs just fine and always has!

The doctors who saw him as a baby would be shocked if they saw him doing this.

He is lifting 205 lbs. here.

He put up 205 lbs. eight times. Shawn was amazed. Then he went and lifted 205, too! He was inspired by Patrick to do more than he thought he could do.

He can do amazing things with his legs, too. He does kicks and lots of martial arts moves that require strong legs.

The next time Gary was home, he videotaped Patrick benching, and he benched 225 lbs!

Stay tuned. More to come!

Further Details About Patrick’s Testimony

When I first had Patrick, I was told to check out a support group for parents of children with arthrogryposis. It was anything but encouraging. I only read a few issues of their newsletter and then stopped looking at them. But here is how some children are affected by it.


A gorgeous little baby girl with arthrogryposis

Some are unable to walk or run.

As I was doing research for this article, I found some other pictures online that were extremely disturbing, with bodies twisted out of all alignment and grossly misshapen body parts, but I believe that most people with Arthrogryposis are more like the way Patrick was.

The support group didn’t show those kinds of pictures, but the stories were not encouraging to me, because they told of many surgeries and lots of intervention and time in hospitals and doctors’ offices. That was not the kind of life I wanted for Patrick or my family. I prayed that God would just heal Patrick sovereignly.

One night, I was putting pictures in photo albums. It was kind of strange that I was doing it. I was way behind and felt like it was more than I could handle. I didn’t even know about scrapbooking back then, but there’s no way I could have done any of that. Just putting pictures in albums was a chore. There was so much going on in my life. It got very late, and everybody else was in bed. The house was nice and quiet, and I was getting tired. I kept thinking, “What am I doing? I should be sleeping while I have the chance.” But I kept working at my photo album. Finally, I told myself I was being foolish, and I just needed to go to bed and get the rest I needed. I walked from the kitchen through the living room where the tv was on. I was walking past the television when I heard Benny Hinn say, “The parents of Patrick should listen to this.” I stopped and stared at the tv. Benny started quoting some verses about how God takes care of his children. I sat down and listened as intently as I could. I was trying to memorize what he was saying. I knew that he was saying it to me. I remembered two of the verses.

Psalm 34:19 Many are the afflictions of the righteous: but the LORD delivereth him out of them all.

The other was really similar:

Psalm 34:17 The righteous cry, and the LORD heareth, and delivereth them out of all their troubles.

I was just sitting there soaking in what the Lord was saying to me. Then I was shocked to hear Benny Hinn say these words:

“Patrick is going to be fine.”

I knew that the Lord had just given me a promise.

I hung on to that promise and let the Lord lead me into a more “believing for the supernatural, less dependent on medical professionals” lifestyle.

When Patrick was 2 1/2 and 3 years old we went to a church with a little boy named Reggie who was about Patrick’s age who also had arthrogryposis.  He was more severely affected by it.  His wrists were bent like the wrists of the baby in the first picture above.  He couldn’t straighten them out to hold a cup or get food to his mouth or anything.  He needed help with everything.  He had a really hard time walking, too.  In fact he couldn’t walk when we first met him.  He didn’t start walking until he was over 2 years old.  Patrick had started right around 1 year old.

I was amazed that there were 2 boys in the same church with this condition.  It is very rare –  only 1 in 3000 births.  And they were close to the same age.  I talked with the mother.  I asked if she had taken thyroid medication, because I wondered if that was what had caused Patrick’s condition.  She hadn’t.  She told me that Reggie was going to have surgery to straighten his wrists so that they would be stuck in a straight-out position instead of a bent position.  The joints would be frozen, but he would be able to do more that way than he could with them hooked in the way they were.  We felt so bad for him.  We prayed for him a lot.  Patrick saw how badly it could have affected him, and he became more thankful for what he had.

One thing that Patrick struggled with was breathing difficulties.  He would run around and get all excited, and then he would come in struggling to breathe.  One time, he was having such a hard time, he just laid on the couch and tried to get some breath.  He was heaving, and I could tell he was trying to talk, but he couldn’t.  I knew it was serious, so I took him to a pediatrician.  She gave him 2 breathing treatments and then sent him to the hospital.  They diagnosed him with asthma.  But we never claimed it.  I got a breathing treatment machine.  We got him an inhaler.  We used these things when he needed them, but we never said that Patrick had asthma.

During our travels across the country, we didn’t have the machine or inhaler.  Patrick didn’t have any breathing problems.  When we settled in Kansas City, he had some problems, but he experimented with sleeping in different parts of the house and found that he was okay if he slept in the basement.  We never had to take him to the doctor because of breathing problems while we lived there.  The rest of us seemed to have more problems than he did!  In the last couple of years, he hasn’t had any breathing problems at all.

His club foot did start to turn in after the first surgery.  He started to walk on the outside of his foot.  It became more noticeable all the time.  A Shriner saw him walking on the side of his foot and talked to Gary about doctors they had that would fix his foot for free if he went to their hospital.  I was very uncomfortable about doing anything with the Masons, so I didn’t pursue it.  I was trusting God to take care of his foot.  The Shriner, Carl, started coming to our house and persisted in trying to convince me to send Patrick to their hospital and have him operated on.  I politely refused.  He started harassing me and telling me that Patrick would hate me some day for not taking care of his foot.  He said that the things I had heard about the Masons were all false.  He kept coming by and pestering me.  It was really disturbing.  But he came while Gary was at work, and I didn’t want to be rude to him.  He stayed for an hour or more each time telling me all the wonderful things the Shriners do.

I started praying about Patrick’s foot more diligently.  We took him to a church and asked everyone to pray for his foot to turn.  We told the Lord that if He didn’t heal it by a certain date, we were going to take him back to the orthopedic surgeon and have him operate on it.  The foot didn’t turn, so we did end up having the surgery.  Patrick had a total of 5 surgeries on his foot and on the hypospadias by the time he was 6 years old.  He has never had any other surgery since then.  He never had anything done to his elbows, muscles, tendons or anything else.

The summer before that, he played soccer.  He did really well, even with his foot turning in.  And everybody loved Patrick.  At one of the first practices, we were pulling up to the field, and I started hearing kids yelling, “There’s Patrick.  Patrick’s here!”  I couldn’t believe it.  I think there had only been one practice before that, and he was homeschooled so he didn’t know anybody from school or anything.  He has always been very popular everywhere we go.

A geneticist told us that it was not likely that any of our future children would have arthrogryposis.  I prayed really hard about this because I wanted another child.  Our plan had been to have four children, but I was unsure about whether I should have more if they might have birth defects.  I went to a woman from church who had five kids and asked her how she felt about birth control and having many children.  She and her husband used natural family planning.  She knew when she was fertile, and they decided when they wanted to try to have a child or when they wanted to keep from getting pregnant.  I heard more about this method on Focus on the Family later.  I liked this method much better than birth control pills.

God took me even further and asked me to let Him be Lord of my womb.  He showed me that people-making is really His business, not mine.  If He wants to put a child in my family, I should not stand in His way.  He knows what children are supposed to be in my family.  I don’t.  By trying to control that, I was meddling in His affairs!  So I have let Him do His will in that area, and He has blessed us abundantly above all that we could ask or think, with 10 children.  And none of them have any physical problems at all.  And Patrick has been gradually healed from the moment we first found out that he had any problems.

We have been able to live life as a family at home, not in doctors’ offices or hospitals.  I am so thankful for the wonderful blessings that God has bestowed on us.

The first part of this testimony is here if you would like to read it.