Autism has pushed me and pulled me...

Tomorrow my youngest child, Angelique, will be 16… I’d be lying if I said I am completely calm and collected about this event ☺ 

First of all, I remember as if it was yesterday when she entered this world, tiny, pink and shivering, and had to be placed under a warming lamp for an hour before they would let me hold her! 

Second, how am I soooo darn old? Not only are all my children teenagers, but they are older teens, at that! Ugh… I still feel like a teenager myself, in my mind at least… (oops maybe I shouldn’t have admitted to that ☺ But it’s the truth!)

Indeed my mind is young and willing, but my body, yikes, that’s another story entirely… I have been dragging my feet for a while about posting, because I have come to the point in the telling of our life journey where I have to share the impact of “health issues”, namely mine… That’s not something that’s super fun to discuss… I don’t know if this will help someone. Maybe no one. Maybe one person. Maybe it will help someone carry on.

I will not go into Ben’s heath issues here. Ha. I need another entry for that ☺

Health Troubles

November 2000 to July 2005

At the end of 2000, more trials, related to my health this time, were awaiting us. I had been feeling so very tired, but with a seven year old “genius” –Camie had tested with an IQ well above normal, that year–  a five and a half year old autistic boy and a three and a half year old girl who never stops running, what was I to expect?

I didn’t understand though. I was eating right, exercised every day at the YMCA and slept well now that Ben’s seizures were under control. I had even lost fifty pounds that year, on purpose! I had dieted and reached a healthy weight for me, shed all the “baby pounds” and stress ones too, and was feeling great about that achievement. So why didn’t I feel better?

My muscles contracted all by themselves even after stretching after exercise. My joints felt stiff all the time. My ever present headaches and depression were coming back with a vengeance. Why? That wasn’t supposed to happen, I was doing everything right!

I have said earlier that Heavenly Father is never finished refining us, that is why. If some people seem to go through life unscathed, great for them. As for me it wouldn’t be so. I knew from my patriarchal blessing that great trials were in store for me. I just am so grateful that they are not worse than they actually are.

My life line, my motto of “the only way out is the way through” doesn’t exactly apply in my health situation but it applies to my mortal life because I just want to return to live with Father in Heaven. So if I endure this mortal estate and its troubles well and “return with honor”, then I will be victorious.

After a battery of medical tests that were somewhat uncomfortable, some invasive and some painful, all of them costly, I was diagnosed with sleep apnea –strange, I thought I was sleeping well now–, early or recurring-remissive multiple sclerosis and fibromyalgia. All these conditions won’t necessarily kill you, but they will make your life very miserable.

MS might kill you, depending on its development, but eight years after my diagnosis I have decided that mine isn’t the killing kind, just the refining sort. In Mosiah 23:21-22 we read: “Nevertheless the Lord seeth fit to chasten his people; yea, he trieth their patience and their faith. Nevertheless –whosoever putteth his trust in him the same shall be lifted up at the last day. Yea, and thus it was with this people.”

I hope and pray that I am lifted up at the last day. Did I think that my patience and faith had been tried enough with Ben and his autism? Yes, you bet; but the Lord didn’t think so. Then I would do this too. Obviously, what other choice did I have? “The only way out is the way through”, right? I am not always so full of optimism and at times I am downright depressed by all I have to face, especially when the pains in my body are very acute.

But then it helps me so much to count my blessings and remind myself of how much worse it could be. My MS could be the progressive kind for example, or Ben could be non-verbal; that would be a real trial: me in a wheelchair and Ben unable to speak. My husband confided that this thought truly makes him shudder. So we are grateful for what we have. And we persevere.

I think my health issues made me more patient in some ways. They have also tried my faith because at times it is hard to keep going when all I want is for the pains to disappear and for everything to get better. Just as with Ben’s autism, my fibromyalgia and other ailments are pretty much invisible to others, so they don’t understand why I don’t feel well or cannot do the things they can without any problem.

At times I have felt cut off from others, “misunderstood” by others. But such is life. It makes me more humble. It makes me depend on my Lord and Savior more. It draws me closer to my husband. I think people fear what they don’t understand. At times they are too busy to worry about why someone hasn’t been at church for a while. (Although I have to say, people in my current ward are wonderful and do notice when I am not there ☺) All we can do is endure to the end, know that the church is true and rely on our faith that our Savior knows us and loves us and never will forsake us. He never said this mortal estate would be easy only that it would be worth it.

But I also have to say that my ties with my family in France have been made stronger by the trials we have had to face. Maybe because they have seen that despite the difficulties we have we don’t give up and especially that God has never forsaken us! My parents have expressed how proud they are that Keith and I are raising our children so well! ☺ What a blessing to hear this!

In the middle of finding out about all these health problems, I plummeted into a real deep clinical depression. Taking care of three young children, one with special needs, was very taxing and I could not deny any longer that all the good things I was doing for myself were not sufficient to ward off the darkness I felt closing in around me. So I sought medical advice and started taking anti-depressants, which six weeks after I started, made a world of difference in my life.

It was as though a heavy metal lid had been lifted from my vision. I could finally see myself once again for who I was, a daughter of God, doing all she could for her family and trying to accomplish the special mission she had been given to raise Ben and two other special little girls.

Clinical depression can be very damaging to LDS sisters (or anyone!!) and if not properly diagnosed, can destroy the lives of the families they are trying to care for. I am so grateful I sought medical help so I could face my other health issues and Ben’s problems with a better outlook.

I continued exercising, but didn’t push myself as hard as I had before. I needed to be more gentle to my body now with the fibromyalgia tensing up my muscles. I fell down the basement stairs a few times due to the MS numbing my legs and I learned to listen to my body even more and slow down so I wouldn’t have to repeat these experiences.

If I was to endure and be healthy and stay around to care for my family, I would have to be wise. Another time I woke up with my jaw misaligned, I couldn’t open my mouth and eat all day, another warning to slow down. I needed to “be temperate in all things”, “be sober” and “bridle all my passions” (Alma 38:10, 12&15)

Doctrine and Covenants 24:8 comforts me personally, although it was given to the Prophet Joseph and I do not for one minute claim to compare myself to our beloved martyred leader: “Be patient in afflictions, for thou shalt have many; but endure them, for lo, I am with thee, even unto the end of thy days.”

Autism, fibromyalgia, multiple sclerosis, sleep apnea, clinical depression, were those all the trials Heavenly Father meant to tell me about in my patriarchal blessing? No, in early May 2003 while Keith was away on a business trip and I was standing at the bus stop waiting for my girls to get to school, I started to feel some acute discomfort in my chest. I thought it was just anxiety over being left alone for the week; it had started the night before but less severely... I just shrugged it off to being a “single mom” for the next seven days and also having just rejoined the workforce as an English as a Second Language teacher after a seven year hiatus.

So here we all were, standing at the school bus stop, waiting for the girls to leave for the day, when the conversation with the other mom also waiting there suddenly turned very serious, she said: “I am so sad, I have to go to a funeral this afternoon, my niece’s son just suddenly and unexpectedly passed away a few days ago. He was healthy and playing a basketball game when he all of a sudden collapsed and died instantly.”

Of course that captured my attention, it was as though Heavenly Father was sending signals to me. I was having chest pains that radiated into my left arm at that very instant. The lady continued: “The lad was very healthy and had just gone to his cardiologist, he had given him a clean bill of health even though he had been born with a heart defect, the doctor had said that nothing was going on, that he could continue to exercise normally.”

After the girls got on the bus, I called my supervisor at work to tell her I wouldn’t be in, and drove myself and Ben to the emergency room. I just couldn’t ignore that kind of warning with Keith out of town, what if something was to happen to me? Ben was so subdued at the hospital, he pushed my wheelchair around when they took me for X-rays and was so well behaved, no one was the wiser that he had a developmental delay of any kind!

My heart wasn’t congested or in any distress but I was found to have a congenital heart defect, atrial septum defect or a hole in the heart that causes a murmur, and also mitral valve prolapse, which was causing the sharp pains in my chest. I was flabbergasted. How could have I been walking around for thirty-three years with congenital heart defects? Glory to the mercy and perfect love of an all knowing Father in Heaven who would warn me through the story of a stranger at the bus stop... I was just dumbfounded.

Truly like Paul in 2 Corinthians 12:9 I can say: “My strength is made perfect in weakness. Most gladly therefore will I glory in my infirmities, that the power of Christ may rest upon me.” Elder Dieter F. Uchtdorf, in October 2008 General Conference, testified to us that: “Wherever you live on this earth and whatever your life’s situation may be, I testify to you that the gospel of Jesus Christ has the divine power to lift you to great heights from what appears at times to be an unbearable burden or weakness. The Lord knows your circumstances and your challenges. He has said to Paul and to all of us, ‘My grace is sufficient unto thee’.”  I also have a testimony of the truths of these things, the Lord has not forsaken me.

How could I deny the Lord’s hand in my life when each and every day is a miracle? My son continued to progress despite a challenging disability and my own health issues seemed to have miraculously been put on hold, or at least, I was given enough strength to bear them so that I could take care of my family and return to teaching when Angelique entered Kindergarten. 

Indeed I felt that the scripture in Alma 7:24 applied to us: “And see that ye have faith, hope, and charity, and then ye will always abound in good works.” Life wasn’t easy, it never would be, but we were performing good works and had faith. I felt all would be well for our family.

Even if, just a few months after Angelique turned eight and was baptized, in July 2005, she was diagnosed with Hashimoto disease: an auto-immune disease that attacks the thyroid and causes it to completely shut down.

She needs to take replacement thyroid hormones for the rest of her life to continue her growth. But we are so blessed, it could be so much worse again. Her doctor caught it and modern medicine enables her to be treated and live normally. She is just a little small for her age. “O Lord, thy righteous will be done, for I know that thou workest unto the children of men according to their faith” (Ether 12:28).

My “sister” Jennifer Harper never forgot me or my family after she moved to Hawaii or even when her family returned to Utah. She always kept in touch with me, offering kind words of help and encouragement, buoying me up when all seemed bleak and dark around me.

One last thing I would like to add today, May 22, 2013: Full or part-time employment has been a therapeutic outlet for me amidst all of the issues that our family has had to deal with through the years. As I have shared before, since Angelique started Kindergarten ten years ago, I have always worked as a teacher or tutor, which enables me to be home when my kids are, before and after school. One might think that I should stay home since “I have enough on my plate” to keep busy… Well, no, it doesn’t work that way. My depression gets worse if I stay home. I just feel better serving others and using my talents. I just have to think of others, see others, especially when Minnesota winters would tempt me to stay in and in my pajamas all day ☺I love being at school and interacting with students and teachers, and it keeps me sane.