Friday, November 07, 2014

If I Had Known What I Know Now...

Eight years ago today we had to say goodbye to our baby girl. We were forced as parents to make the hardest decision a parent can be asked to make in their journey as a parent. We had to take our baby girl off of her life support and allow her spirit to go back to heaven for a while.

If I had known then, what I know now... If I had the chance to say goodbye again, there are a few things I would be sure to do. I share these thoughts from my Mother Heart with a prayer that my forced wisdom might bless another mother along the way...

If I knew that I would be forced to say goodbye so soon:

I would have INSISTED that the docs and nurses in the NICU allow Leif and I to hold Rhea many many times before that fateful day. I think it is very sad that my first time holding my baby was also my last.

I would have taken A LOT more pictures and videos then we did.

I would have hired a professional photographer to be with us along the journey and especially during those last hours.

I would have had Jakob hold his baby sister a lot and gotten pictures of them together before they took her off of the ventilator.

These are just a few things. But in the long run and after all is said and done, this is what we have to hold on to for the years to come.

All is well enough for us. We have many many precious mementos and good enough photos and a precious painting that we cherish. But every now and then, I allow myself to ponder a few of the things that I wish could have been.

Thursday, October 30, 2014

Burial Gowns Instead of Baptism Gowns

There are milestones to every child's life. Moments worked towards and celebrated when reached. For a child born into a family who are members of The Church of Jesus Christ of Latter Day Saint (Mormons) the Milestones might go as follows:
Birth .
(1 Mo.) Given a Name and a Blessing by the Priesthood
(8yrs) Baptism and Confirmation
(12 yrs) Girls enter the Young Women's Program and boys receive the Aaronic Priesthood
(18 Yrs) High school Graduation and  embark either to college for the girls or a two year Mission for the Men
(19yrs old) Women can go on an 18 Mo. Mission
(20 Yrs old) return with Honor and attend College

There is one Milestone that is perhaps The Most Important above all of the others listed. And that is Baptism and Confirmation when the child is ready and most likely around 8 years old.

Tomorrow my baby girls who are in heaven, would be 8 yrs old if they had survived. We would be laying out their white dresses tonight and their white hairbows and white shoes and maybe they would practice one more time with Papa how to hold his wrist and plug their nose when they get in the water, just one more time, Maybe we would have a special family discussion about the importance of each baptismal covenant that is made and the blessings promised in return for following them.

As their mother, I would have had the blessing and honor to help choose 3 very precious white dresses throughout my daughters life's. Their Blessing dress, their Baptism dress, and their Wedding dress. Instead, I was only able to choose one white gown and it was a Burial Gown.

There is a lot of emotion involved in the whole of this subject. Not just the "traditions of dress" but the ordinances themselves.  I learned while serving a mission for our Savior, that there is great sorrow and tragedy in the loss of a baby that I have been spared from. My heart longs to bring the same comfort that I feel now, to some of the families that I met along my way on my mission.

Many grieving parents have been told that their precious babies are spiritually lost to them because they were not baptized. I can't imagine the confusion and unnecessary pain that would bring to an already broken mother and father.

I am here to testify that our babies are not lost! Their spirits are still very much alive and well, and we will be with them again. I know this because it is the instinctive feeling that I have within my Mother Heart. But I also have this knowledge confirmed to me through the Holy Spirit while reading scripture that teaches this to us. We can read in The Book of Mormon, Moroni Chapter 8: 8 what Jesus Christ revealed to His prophets saying:  "Listen to the words of Christ, your Redeemer, your Lord and your God. Behold, I came into the world not to call the righteous but sinners to repentance; the whole need no physician, but they that are sick; wherefore, little children are whole, for they are not capable of committing sin; wherefore the curse of Adam is taken from them in me, that it hath no power over them; and the law of circumcision is done away in me." 

Through our Saviour Jesus Christ our precious innocent babies were welcomed back into Heaven and wait for our return as we live worthy of such a blessing . This is the motivation that keeps me going on some of my hardest days.

Sunday, October 26, 2014

I think there might only be one form of mental illness that is harder to endure than being in a suicidal depression, and that is being in a functional depress. In my experience functional depression is when a person is experiencing all of the  clinical symptoms of mental illness but some how their body, mind, and spirit are still able to continue on with their daily tasks and responsibilities. Functioning Mental Illness in like experiencing the storms of a Tsunami while everyone else seems to be riding the awesome gigantic waves as if their is no care on the world.

I had a dream last night.

Leif and I were sitting on a bench in a parking lot and off in the distance I saw a beach and the ocean waves rolling. Suddenly the waves grew into a wall of water. When it crashed it came over the sand and close to the parking lot we were sitting in. I turned to Leif in surprise and said "where are we?!" I knew we were in Hawaii, but I didn't know that we were so close to a beach. We talked a little and I told Leif that I felt sure those waves were going to eventually make it past that parking lot as the tide rolled in.

Suddenly the scene changed and though I was in the same location, with the same waves rolling in, I was with my kids trying to order pizza at a "fast" pick up pizza shop. They weren't fast and my kids seemed to be running all over the shopping center. I couldn't keep track of all three of them at one time and no matter how hard I tried it seemed they refused to understand how desperately I needed them to stay close to me. I knew that we were in a dangerous situation and in the mean time I didn't know how to find Leif and our van. At one point I looked down and I was wearing my favorite nightgown. But it doesn't have a pocket and I didn't have my cellphone with me. -my only connection to Leif.

The nightmare continued with me chasing the kids around. I would catch one of them and it was all I could do to keep my temper in check and try as I may to explain how important it was that they help me, help them. But it went on and on. The pizza was taking forever, not that it was my top priority. Keeping us all together and alive was the top priority. I think I knew that Leif was eventually coming back to the shop to get us. I also remember that the pizza shop was selling Dairy Queen ice cream sundaes. But everyone ignored my multiple requests to find out how much they cost.

At one point I had managed to reign in all three squirming boys. I was holding on to them as a wave was building up off in the distance. I gauged how tall it was and where it would crash and knew that we were in its path. So I told the boys to hold on to me and hold their breath when the water went over their heads. I also explained that we would be in a part of the wave that could be fun if we wanted it to be. It would just be pushing us along the top of the sand and we could just ride it out. And we did. We were at the edge of the wave... No major rip current back.

After the ride on the wave I had managed to find a school backpack with several ties on it. I took each of the straps and tied it around a child and then tied the strap to a belt loop (that I suddenly had, Good by comfy nightgown. ;) I had finally managed to secure each child safely and just like, I looked up and we were at a door and Leif was standing there, ready to take us to the van. As we were walking I was flippantly telling him of the struggle that I was having with the kids and he was listening, while also trying to help us make our way to the van. The parking lot was a mess by now. Sand and stones had covered it and cars were scattered throughout. I remember feeling upset for a moment that Leif didn't sweep me into his arms and hug away all of my woes. But that was short lived, after all, we were working together to keep us all alive. We climbed in the van and as I untied the kids from my belt I struggled to get them into their seatbelts. Everything was such a struggle.

Before I knew what was happening I relized Leif was pushing another van out of our way and it was making a mess of the other van. I remember praying out loud for our van. Praying that it would keep working through the struggle...

And then without warning - I was alone. Back in the shopping center and the storm was raging around us. And again, I was without a cellphone or a computer. I remeber thinking it was so odd that the power was still on. Also strange was that some people were afraid of the storm and others just floated around in the water here and there visiting with friends, smoking, drinking, and having a great time.

All the while there was lightening, thunder, and crashing waves. The wind was blowing not just the rain but also sand. The sand seemed to be bubbling over the edges of the buildings off in the distance. Beach gear and debris swirled around us.

I went into a stairwell for protection. But I was divided on whether I wanted to ride out the storm there or if I wanted to go search for Leif and the kids. At times the storm was so bad that I had no choice but to stay there.

I did venture out to find my family. The dream was becoming too much for me and I was trying to wake myself up. I woke up just as I had decided to go to the church buildings in the area to see if Leif had gone there.

I woke up just as I found Leif.

Friday, October 17, 2014

Well Enough -or- Is Enough

Tonight I found myself pleading with the Lord to help me find the person who has the answers/medication that will heal and balance me to be "well Enough" to care for my loved ones the way I long to. Well enough to care for them consistently without the crashes and lows. Just a steady well enough.

And then I pondered the fact that it could be the plan for me to struggle so deeply, so much, and so often. This is incredibly hard for me to fathom. Hard for me to even begin to piece together why it is meant for me to have a mind that is so unbalanced and fuzzy. To have a body that is so exhausted. To be well enough just long enough to get on track and then be thrust down again. Why I would be held back from doing good. From serving. From acting on desires to serve. But the truth is, it could be the plan. And so I was led to pray for answers. With a hope that My will is HIS will, but a painful knowledge and experience, that sometimes it is not. I began to pray again...

The prayer continued and turned to a plea for the feeling of Joy and peace with what is. What I do have, and what I Can Do. I just need to feel a consistent joy, and that can only come from Him. And then I asked a question to Him: HOW,  do I come to this Joy, even though...

And then the words came into my mind and heart: "Forgive HIM!" ....  And the shock! Forgive God!? (Is this blasphemy?)  But I knew it had hit home. Perhaps the right word is accept.  But truth be told, deep down I think I felt wronged. Like my spirit has been wronged by the fact that I can't fulfill what I see as my potential.

The dictionary defines the word forgive as: "stop feeling angry or resentful toward (someone) for an offense, flaw, or mistake." And the word accept is defined as: "to be able or designed to take or hold."

And in reality, both of those words are exactly what I need to do. Carrying a belief that the RIGHT answer will always follow a prayer said in faith. I need to repent of the resentment and take hold of the gift that is my body, and my life. Believing that He, my Creator, has not made a mistake. And I am not disappointing Him in my weaknesses. They are, what they are, and if we apply faith to a weakness, He is able to make them strong in His glory and in His way.

This prayer and its answers were inspired partly after reading these two talks:

Of the Second Quorum of the Seventy April 2004

As a young man, I returned home from an eighth-grade basketball tournament dejected, disappointed, and confused. I blurted out to my mother, “I don’t know why we lost—I had faith we’d win!”
I now realize that I did not then know what faith is.
Faith is not bravado, not just a wish, not just a hope. True faith is faith in the Lord Jesus Christ—confidence and trust in Jesus Christ that leads a person to follow Him. 1
Centuries ago, Daniel and his young associates were suddenly thrust from security into the world—a world foreign and intimidating. When Shadrach, Meshach, and Abed-nego refused to bow down and worship a golden image set up by the king, a furious Nebuchadnezzar told them that if they would not worship as commanded, they would immediately be cast into a burning fiery furnace. “And who is that God that shall deliver you out of my hands?” 2
The three young men quickly and confidently responded, “If it be so [if you cast us into the furnace], our God whom we serve is able to deliver us from the burning fiery furnace, and he will deliver us out of thine hand.” That sounds like my eighth-grade kind of faith. But then they demonstrated that they fully understood what faith is. They continued, “But if not, … we will not serve thy gods, nor worship the golden image which thou hast set up.” 3 That is a statement of true faith.
They knew that they could trust God—even if things didn’t turn out the way they hoped. 4 They knew that faith is more than mental assent, more than an acknowledgment that God lives. Faith is total trust in Him.
Faith is believing that although we do not understand all things, He does. Faith is knowing that although our power is limited, His is not. Faith in Jesus Christ consists of complete reliance on Him.
Shadrach, Meshach, and Abed-nego knew they could always rely on Him because they knew His plan, and they knew that He does not change. 5They knew, as we know, that mortality is not an accident of nature. It is a brief segment of the great plan 6 of our loving Father in Heaven to make it possible for us, His sons and daughters, to achieve the same blessings He enjoys, if we are willing.
They knew, as we know, that in our premortal life, we were instructed by Him as to the purpose of mortality: “We will make an earth whereon these may dwell; And we will prove them herewith, to see if they will do all things whatsoever the Lord their God shall command them.” 7
So there we have it—it’s a test. The world is a testing place for mortal men and women. When we understand that it’s all a test, administered by our Heavenly Father, who wants us to trust in Him and to allow Him to help us, we can then see everything more clearly.
His work and His glory, He told us, is “to bring to pass the immortality and eternal life of man.” 8 He has already achieved godhood. Now His only objective is to help us—to enable us to return to Him and be like Him and live His kind of life eternally.
Knowing all this, it was not difficult for those three young Hebrews to make their decision. They would follow God; they would exercise faith in Him. He would deliver them, but if not—and we know the rest of the story.
The Lord has given us agency, the right and the responsibility to decide. 9He tests us by allowing us to be challenged. He assures us that He will not suffer us to be tempted beyond our ability to withstand. 10 But we must understand that great challenges make great men. We don’t seek tribulation, but if we respond in faith, the Lord strengthens us. The but if nots can become remarkable blessings.
The Apostle Paul learned this significant lesson and declared, after decades of dedicated missionary work, “We glory in tribulations … knowing that tribulation worketh patience; And patience, experience; and experience, hope: And hope maketh not ashamed.” 11
He was assured by the Savior, “My grace is sufficient for thee: for my strength is made perfect in weakness.” 12
Paul responded: “Most gladly therefore will I glory in my infirmities, that the power of Christ may rest upon me. … I take pleasure in infirmities, in reproaches, in necessities, in persecutions, in distresses for Christ’s sake: for when I am weak, then am I strong.” 13 When Paul met his challenges the Lord’s way, his faith increased.
By faith Abraham, when he was tried, offered up Isaac.” 14 Abraham, because of his great faith, was promised posterity greater in number than the stars in the heavens, and that that posterity would come through Isaac. But Abraham immediately complied with the Lord’s command. God would keep His promise, but if not in the manner Abraham expected, he still trusted Him completely.
Men accomplish marvelous things by trusting in the Lord and keeping His commandments—by exercising faith even when they don’t know how the Lord is shaping them.
By faith Moses … refused to be called the son of Pharaoh’s daughter;
“Choosing rather to suffer affliction with the people of God, than to enjoy the pleasures of sin for a season;
“Esteeming the reproach of Christ greater riches than the treasures in Egypt. …
By faith he forsook Egypt, not fearing the wrath of the king. …
By faith they passed through the Red sea as by dry land. …
By faith the walls of Jericho fell down.” 15
Others “through faith subdued kingdoms, … obtained promises, stopped the mouths of lions,
“Quenched the violence of fire, escaped the edge of the sword, out of weakness were made strong, waxed valiant in fight.” 16
But in the midst of all those glorious outcomes hoped for and expected by the participants, there were always the but if nots:
“And others had trial of cruel mockings and scourgings, … bonds and imprisonment:
“They were stoned, they were sawn asunder, were tempted, were slain with the sword: they wandered about … being destitute, afflicted, tormented; … 17
“God having provided some better things for them through their sufferings, for without sufferings they could not be made perfect.” 18
Our scriptures and our history are replete with accounts of God’s great men and women who believed that He would deliver them, but if not, they demonstrated that they would trust and be true.
He has the power, but it’s our test.
What does the Lord expect of us with respect to our challenges? He expects us to do all we can do. He does the rest. Nephi said, “For we know that it is by grace that we are saved, after all we can do.” 19
We must have the same faith as Shadrach, Meshach, and Abed-nego.
Our God will deliver us from ridicule and persecution, but if not. … Our God will deliver us from sickness and disease, but if not … . He will deliver us from loneliness, depression, or fear, but if not. … Our God will deliver us from threats, accusations, and insecurity, but if not. … He will deliver us from death or impairment of loved ones, but if not, … we will trust in the Lord.
Our God will see that we receive justice and fairness, but if not. … He will make sure that we are loved and recognized, but if not. … We will receive a perfect companion and righteous and obedient children, but if not, … we will have faith in the Lord Jesus Christ, knowing that if we do all we can do, we will, in His time and in His way, be delivered and receive all that He has. 20 I so testify in the name of Jesus Christ, amen.

But if not...  LANCE B. WICKMAN
Of the First Quorum of the Seventy October 2004

Some of my richest memories are associated with weekend assignments to stake conferences as I have accompanied a stake president in visits to members of his stake wrestling with life’s challenges in courage and faith, especially those who have lost a child or who are struggling valiantly in nursing a sick or crippled or handicapped child. I know from poignant personal experience that there is no night quite so dark as the loss of a child. Neither is there any day quite so long and exhausting as the relentlessness of caring for a child crippled in form or faculty. All such parents can empathize exquisitely with the father of the child afflicted with a “dumb spirit,” who, when admonished by the Savior to believe, responded in anguish of soul, “Lord, I believe; help thou mine unbelief” (see Mark 9:17, 23–24).
And so today I wish to speak to all who are struggling in this laboratory of applied faith that is called mortality—and in particular to those bereaved, burdened, and grieving parents who beseechingly ask, “Why?”
First, please know that grief is the natural by-product of love. One cannot selflessly love another person and not grieve at his suffering or eventual death. The only way to avoid the grief would be to not experience the love; and it is love that gives life its richness and meaning. Hence, what a grieving parent can expect to receive from the Lord in response to earnest supplication may not necessarily be an elimination of grief so much as a sweet reassurance that, whatever his or her circumstances, one’s child is in the tender care of a loving Heavenly Father.
Next, do not ever doubt the goodness of God, even if you do not know “why.” The overarching question asked by the bereaved and the burdened is simply this: Why? Why did our daughter die, when we prayed so hard that she would live and when she received priesthood blessings? Why are we struggling with this misfortune, when others relate miraculous healing experiences for their loved ones? These are natural questions, understandable questions. But they are also questions that usually go begging in mortality. The Lord has said simply, “My ways [are] higher than your ways, and my thoughts than your thoughts” (Isa. 55:9). As the Son’s will was “swallowed up in the will of the Father” (Mosiah 15:7), so must ours be.
Still, we mortals quite naturally want to know the why. Yet, in pressing too earnestly for the answer, we may forget that mortality was designed, in a manner of speaking, as the season of unanswered questions. Mortality has a different, more narrowly defined purpose: It is a proving ground, a probationary state, a time to walk by faith, a time to prepare to meet God (see, for example, Abr. 3:24–252 Ne. 31:15–16, 20Alma 12:24Alma 42:4–13). It is in nurturing humility (see Alma 32:6–21) and submissiveness (see Mosiah 3:19) that we may comprehend a fulness of the intended mortal experience and put ourselves in a frame of mind and heart to receive the promptings of the Spirit. Reduced to their essence, humility and submissiveness are an expression of complete willingness to let the “why” questions go unanswered for now, or perhaps even to ask, “Why not?” It is in enduring well to the end (see 2 Ne. 31:15–16Alma 32:15D&C 121:8) that we achieve this life’s purposes. I believe that mortality’s supreme test is to face the “why” and then let it go, trusting humbly in the Lord’s promise that “all things must come to pass in their time” (D&C 64:32).
But the Lord has not left us comfortless or without any answers. As to the healing of the sick, He has clearly said: “And again, it shall come to pass that he that hath faith in me to be healed, and is not appointed unto death, shall be healed” (D&C 42:48; emphasis added). All too often we overlook the qualifying phrase “and is not appointed unto death” (“or,” we might add, “unto sickness or handicap”). Please do not despair when fervent prayers have been offered and priesthood blessings performed and your loved one makes no improvement or even passes from mortality. Take comfort in the knowledge that you did everything you could. Such faith, fasting, and blessing could not be in vain! That your child did not recover in spite of all that was done in his behalf can and should be the basis for peace and reassurance to all who love him! The Lord—who inspires the blessings and who hears every earnest prayer—called him home nonetheless. All the experiences of prayer, fasting, and faith may well have been more for our benefit than for his.
How, then, should we approach the throne of grace as we plead earnestly for a loved one and place hands upon her head to give a blessing by priesthood authority? How do we properly exercise our faith? The Prophet Joseph Smith defined that first principle of the gospel as “faith in the Lord Jesus Christ” (A of F 1:4; emphasis added). It is that defining phrase—“in the Lord Jesus Christ”—that we sometimes forget. Too often we offer our prayer or perform our administration and then wait nervously to see whether our request will be granted, as though approval would provide needed evidence of His existence. That is not faith! Faith is, quite simply, a confidence in the Lord. In Mormon’s words, it is “a firm mind in every form of godliness” (Moro. 7:30; emphasis added). The three Hebrew magistrates expressed trust that the Lord would deliver them from the fiery furnace, “but if not,” they said to the king, “we [still] will not serve thy gods” (Dan. 3:18; emphasis added). Significantly, not three but four men were seen in the midst of the flames, and “the form of the fourth [was] like the Son of God” (Dan. 3:25).
So with us. It is common in our secular world to say that “seeing is believing.” Whatever value this little maxim may have in the mundane affairs of life, it is an alien presence when we turn to the Lord in the dark hour of our extremity. The way of the Lord is best defined by a different maxim: “Believing is seeing.” Faith in the Lord is the premise, not the conclusion. We know He lives; therefore, we trust Him to bless us according to His divine will and wisdom. This childlike confidence in the Lord is known in scripture simply as the “sacrifice” of “a broken heart and a contrite spirit” (D&C 59:8).
I offer this as profound conviction born in the fiery crucible of life’s experience. Our second son, Adam, entered our lives when I was far away in the jungles and rice paddies of Vietnam. I still have the joyful telegram announcing his birth. Adam was a blue-eyed, blond-haired little fellow with an impish personality. As he turned five years old, Adam eagerly looked forward to starting school. Then a common childhood illness blanketed our southern California community, and Adam contracted the disease. Aside from concern for his comfort, we were not worried. He even seemed to have a light case. Suddenly one morning he did not arise from his bed; he was in a deep coma. We rushed him to the hospital, where he was placed in intensive care. A constant cadre of devoted doctors and nurses attended him. His mother and I maintained a ceaseless vigil in the waiting room nearby.
I telephoned our dear stake president, a childhood friend and now a beloved colleague in the Seventy, Elder Douglas L. Callister, and asked if he would come to the hospital and join me in giving Adam a priesthood blessing. Within minutes he was there. As we entered the small, cramped space where Adam’s lifeless little body lay, his bed surrounded by a bewildering maze of monitoring devices and other medical paraphernalia, the kind doctors and nurses reverently stepped back and folded their arms. As the familiar and comforting words of a priesthood blessing were spoken in faith and earnest pleading, I was overcome by a profound sense that Someone else was present. I was overwhelmed by the thought that if I should open my eyes I would see the Savior standing there! I was not the only one in that room who felt that Spirit. We learned quite by chance some months later that one of the nurses who was present that day was so touched that she sought out the missionaries and was baptized.
But notwithstanding, Adam made no improvement. He lingered between this life and the next for several more days as we pleaded with the Lord to return him to us. Finally, one morning after a fitful night, I walked alone down a deserted hospital corridor. I spoke to the Lord and told Him that we wanted our little boy to return so very much, but nevertheless what we wanted most was for His will to be done and that we—Pat and I—would accept that. Adam crossed the threshold into the eternities a short time later.
Frankly, we still grieve for our little boy, although the tender ministering of the Spirit and the passage of the years have softened our sadness. His small picture graces the mantel of our living room beside a more current family portrait of children and grandchildren. But Pat and I know that his path through mortality was intended by a kind Heavenly Father to be shorter and easier than ours and that he has now hurried on ahead to be a welcoming presence when we likewise eventually cross that same fateful threshold.
When through the deep waters I call thee to go,
The rivers of sorrow shall not thee o’erflow,
For I will be with thee, thy troubles to bless, …
And sanctify to thee thy deepest distress.
When through fiery trials thy pathway shall lie,
My grace, all sufficient, shall be thy supply.
The flame shall not hurt thee; I only design …
Thy dross to consume and thy gold to refine. …
The soul that on Jesus hath leaned for repose
I will not, I cannot, desert to his foes;
That soul, though all hell should endeavor to shake, …
I’ll never, no never, no never forsake!
In the name of Jesus Christ, amen.

Wednesday, October 01, 2014

Autism Conference Notes and Action Plan

Leif and I were blessed to go to the US Autism and Aspergers Association World Conference. I wish that I could have written about what we learned sooner. But I haven't been writing much at all anywhere, so don't feel left out. It's just one of those times.

On our way to Kansas City to attend this conference Leif and I got a phone call that was incredibly upsetting. We learned that our close friends' daughter had just been diagnosed with Stage 4 Liver and Lung Cancer. This little girl was one of few friends that Jakob has ever completely connected with and been able to keep a friendship with. If you have a child with Autism/Aspergers, you know what this one friendship means. She is a jewel in our family in many ways then even just this friendship. This news was very hard to take on. And it battled for attention throughout the conference. Leif and I have no doubt that we were meant to be together alone at this conference for more reasons then just to attend the seminars. We were meant to be able to process our shock and grief and comfort each other. We are so grateful for the time we had. We are also VERY grateful for the knowledge and ideas that we gained from the doctors and experts who taught us throughout the two days.

So with that prelude, I'll tell you about the conference. The conference was held in a beautiful Marriot hotel in Kansas City. We attended Friday and Saturday. The classes started at 8AM and ended at 5PM. So it was a lot of sitting and listening for a girl with ADD and a distracted weeping heart. Gratefully Leif was there to take notes better then me. As you can see from my notes I would have FAILED had mine been graded. But some how, some way, I was able to get a lot out of the conference and I was even able to relax a little and laugh. It was validating and re-energizing to be with so many people who walk the same journey we do as a family. It was also a conference filled with a lot of hope.

We came home with a plan for action. It mainly focuses on nutrition and a little on behavior. Leif mentioned that he was grateful that he attended the conference because he was able to learn more about how the boys' brains work and what causes their difficult symptoms. He feels more empathy for them now as well as understanding himself a little bit more. Leif and I couldn't attend this conference and not see ourselves at one time or another in what someone was lecturing about. I mean, just look at my notes. :) As a mother, I was reminded of how scary loud reprimanding can be for children on the spectrum and how harsh or abrupt movements (getting in their face) are terrifying for them. So as one of the speakers emphasized, I am going to work on choosing Kindness more. Just to be Kind and try to help my kids to be kind to each other as well.

There are two diets that we will most likely follow in the future. But we chose to take a few steps in another direction for a little while before making such a drastic lifestyle change. The diets are the Gluten and Dairy Free diets. We decided that when it came to food, we would work on helping our boys accept and eat a better variety of foods before going Anything-FREE.

And the few steps in a different direction that we will focus on is the supplements that were most commonly recommended throughout the conference by the doctors and experts. They are:

Nutritional Supplements:
Multivitamins (without Copper)
Omega 3 fatty acids
Lithium Orotate (this is the natural form of Lithium, a salt. It is Much less potent then the prescription form Lithium Carbonate.)

We purchased these supplements as soon as we returned home from the conference. I didn't expect to see any major results for maybe one month. But I am telling you, we have seen results! All we can figure is that one of these or all, have helped. Caleb came home from school this week and is finally able to read to us from his little school books.

Sunday, August 17, 2014

Today was the first day in a long time where I felt a lot of

Friday, August 15, 2014

Yep! We Could Use The Help. - Autism Conference

logo and conference crowd
For the last several months Leif and I have been planning on attending the US Autism and Aspergers Association World Conference that will be held in Kansas City this September. Leif even got the days off from work. However, LIFE has happened and it's looking more and more like finances won't allow us to attend.

Today I spent part of the day feeling really bummed about it, and then I started wondering if we really even needed to go. What could they tell us that we didn't already know, right? I mean, we've got three little boys living somewhere on the Autism Spectrum and all with ADD tagging along for the ride. Surely we could probably speak at the conference! (J/K!!!)  No, I really didn't get that sarcastic in my thoughts. But I did slightly start to wonder if we were doing well enough that we could handle not gleaning from the resources offered at the conference...

And then I picked the boys up at the bus stop! HOLY CR**!!! We HAVE to find a way to get to that conference!! We need all the help we can get! I just turn off some of the stress while they're at school I guess and I'm able to breathe, think, and rest... and Forget?  - Crazy!

I know that struggles with Autism and Attention Deficit can be SO much worse then what we deal with. But ours are definitely enough for us at the moment...

Wednesday, August 13, 2014

Twas the Night Before School Starts

Twas the night before school starts and all through the house, the kids are still wrestling, including the mouse... :) Just kidding, don't worry, I'll stop the poetry. But the kids are still awake. It's so interesting how some nights can be so much harder then others. But I don't want to talk about that ongoing issue again.

Today was a fun day. We unplugged the computer last night so we all had to spend the day basically unplugged. And I felt blessed for the most part. It is especially hard for Caleb to go a full day without playing a computer game. Well, that's an understatement. It's VERY Hard for him to not play. So I knew it might be a hard day. Let's put it this way, I found a pretty sound proof location to lay down the law if need be now that we live in an apartment. The Van. We were riding in the van this morning and Caleb was crying and screeching because he wasn't going to be able to play computer when we got home and I kinda lost it... I yelled back until I coughed. "NO COMPUTER TODAY! NONE! NOTHING!... ..." I think I said it in a way that made it pretty clear that I was serious. :)  He only tried a couple times later in the day to sweeten me up and change my mind. Once he offered to give me some of his money and he even drew me a picture with two flowers on it. :) Tempting! But I held strong.

Today we played Tennis (I think we might get Jakob in to lessons, he really enjoys it.) Today we road bikes and walked on the walking trail. Today the boys got their hair cut at a great salon. They all handled their cuts great and the ladies were so charmed by their cuteness. The boys even got to sit in a massage chair while they had their hair washed. It was so fun!

It is so neat to be together every night for our family bedtime routine. Leif is able to make it home just in time to read scriptures and pray. There is strength in that!! And we are grateful for this blessing. Tonight was a special night for our family. Being the night before school starts Leif was able to give each of the boys a father's Priesthood blessing. I am always Amazed at how calm the boys are when Leif lays his hands on their heads to pronounce a blessing upon them. They sit so still and the feeling in the room is so peaceful and filled with love. It is truly wonderful! We were reminded this year through the blessings that the boys have special angels caring for and protecting them. They have twin sisters who are always watching out for them. This is such a sweet for our family. There is a reason we are here this year. We don't know why. But we have been assured through the spirit that there are specific reasons why were are here now. Truthfully, It is still hard for me to have to send my boys to a new school, Again. I miss everything about Columbian and Everyone we grew to love so much. But I can't deny the fact that we have been reassured time and again that we are in the right place. And so, we will continue to walk forward with Faith.

Tis' the night before school starts and all through the house, the children are Finally sleeping, and even that crazy mouse! ... :)

Tuesday, August 12, 2014

Yes Robin, Surly Now There Is Laughter In Heaven!

My heart and mind won't let me rest unless I write about the feelings I feel about the death of Robin Williams. I keep pondering what it may have been like when he reached heaven after finalizing his life in such a way. Some feel that he most likely entered into a realm of hell fire and damnation. An instant consequence for his terrible mistake. Most just feel sadness and leave the rest up to God. But I feel like I need to draw it out in a picture some how what I believe may have happened.

Have you ever suffered through a trial so dark and so intense that it changed the very fiber of your being? During this trial were you ever lucky enough to have a long lost friend of the dearest kind stop in for an unexpected visit? And when you open your door to this friend they open their arms wide for you with the most loving compassion humanly possible towards you and they pull you in to a hug and hold you there while you cry and cry. No words spoken. Just a peace and complete understanding surrounding you.

I believe this is what the reunion was like when Robin Williams entered in to Heaven. I believe his reunion has been followed by several other discussions and filled with a remembering of what he had left when he was born to earth and how it all fits together.

I believe there will be decisions made, "judgement". But that is how it will be for all of us. What we must remember is that God is Just. But he is also a Merciful and All Knowing God. There will be proper consequences to all of our sins according to a judge who has Perfect Knowledge of All Things. This alone brings me freedom from judging, and hope in mourning such a sad ending to such a gifted man.

A Lesson From My Children

Back to School Night:
My Thoughts and Feelings: Turn on the LIGHTS!! -  Where is the COLOR!? - Why are the teachers all so OLD!? - If your library is so big, why aren't the shelves FULL of books!? ...

The Boys' Expressions: Mom, this library is HUGE, you've Got to see it! It's Amazing!! - WOW! This gym floor is so nice and shiny, it smells good too. I can't wait to play on it! - Well, it looks like all of the kids are younger then me, so that will be fun! -  LOOK, my teacher has the PERFECT books for me (Civil War and Planet Earth). -  Papa! My teacher's name is Mrs. Harden, she looks like a Grandma! he, he, he. :) - Mom! There will be a lot of kids from the other apartment's on our bus, won't that be GREAT! ...

There is power in allowing our children to clear up our negativity and find the positive when we struggle to find it. There is also power in keeping our mouth's shut and allowing them to only see their innocent perspectives. There is Joy in allowing our children's goodness lead the way! 

How grateful I am for the lesson's my children reminded me of tonight.

Sunday, August 10, 2014

ADD and Autism Are Just... Hard!

We went to our new ward today for church. The people were really nice and there was an overall good feeling there the whole day. But truthfully, by the time we got home I was exhausted and in a funk. It's just hard sometimes. It's hard going to new places where no one know us and no one knows our story. Our trials and triumphs. Then again, sometimes that is Really Nice! But that's a subject for another time and another post. :)

I think we all handled the struggles at church really well. JJ refused to eat ANYTHING the entire morning before church and honestly I completely forgot to insist on him eating until we were on our way to church at 1:00 and he was insisting that he was HUNGRY! Poor guy!! Gratefully, he fell asleep 10 minutes into the meeting. Caleb made it through 40 minutes of Sacrament meeting before his little body was ready to get up and MOVE! For the last couple of weeks his struggle has been picking at any sores he has on his skin. And if they aren't sores, he will turn them in to sores. And if it's not his nose, a sore, or a freckle;  it's his belly button. Sometimes we have to cover his belly button with a band aid to prevent an infection.  Well, today he started picking during the Sacrament meeting. And when I checked him in primary he was still twisting his skin and picking at it.

Right now, We're having bedtime battles with JJ and Caleb. JJ can't sleep because he napped through church. Caleb's not sleeping because his body won't let him. So far he has been caught searching the apartment for lost money, and emptying the fridge and making himself a snack. And he acts completely unaware that these things are a problem until we are seriously angry. We've followed the same bedtime routine that we've followed forever. But within the last year there are nights when we just can't win. We'll find him doing strange things throughout the night unless we stay right with him all night. He's unpacked boxes, climbed up to shelves in closets and accidentally dumped them, and he's made all kinds of food throughout the night. Sigh... In fact, I have to stop writing so I can go take care of the current struggle. It often feels like I am Constantly on the run!

Saturday, August 09, 2014

The End of a Chapter - The Beginning of a New

And thus ends another chapter in the L&L Baron family story. We are officially moved out of the ranch House and in to an apartment in Willard/Springfield. Today as we drove away from the Ranch I was hit with the reality of this change. I thought about how JJ had run strait for the dirt pile when we stopped at the ranch this evening and what it felt like to call him away to get in the car, knowing that it will be a while until he can sink his little hands into the dirt again. I pondered the serenity and beauty that is endless around the Ranch. For some reason we just can't feel that at the apartment complex. ;) We will miss living on the Ranch! Nothing will compare to the precious gift this last year has been. There have been Many challenges. But there have been oh so many wonderful lessons and once in a lifetime experiences.

We have spent the last week with Grandma and Grandpa Baron and Erik, Stacey, and Victoria Baron. They made the long journey to spend a week with us here in MO. It was not really part of the original plan to have their visit overlap our moving days. In many ways I feel bad that it happened that way. It took time away from the time that we could have been playing. But I am also overwhelmed with gratitude for their love and support. They helped us in so many ways. Truthfully, we Never would have reached our goal to be moved out before the kids start school if it weren't for their help and the help that my parents, church members, and friends have given as well.

While the family was in town we spent a lot of the time just like ol' times, tinkering around fixing odds and ends (Big and Small), visiting, eating, and shopping. We also made time to spend a few days playing hard. We managed to work out the schedule so we could get my family together with Leif's family and have two BBQ's at the Ranch, one which included night games and dutch oven. Another afternoon we went to Joplin Falls and swam in the river. We also went to Silver Dollar City and had a wonderful time and came home Exhausted!! Caleb experienced his first roller coaster ride. He went on Thunderation. He LOVED It!!! We were so thrilled to see his excitement and pride afterward. One of the nights everyone except the little boys and I went on a haunted castle tour. They had a good time until the end when Jakob suddenly Passed Out flat! He had gotten overheated and excited and passed out and then vomited to add more excitement to the experience. Everyone came home pretty shook up. :(  And today before Leif took everyone to the airport we all went to Bass Pro Shops. We had a fun time walking through the shops and museums. It was a great way to end our time together. We're already trying to plan the next time we'll be together...

The boys start school next week. They are excited. I am looking forward to the way school helps them in general. But I feel nervous and hopeful about the upcoming weeks as we get to know teachers and the school and find out how the overall dynamic will be for that part of our life. We will also go to our new ward for church tomorrow. We have heard many good things about church and the school. So I am praying that all will go smooth enough to find the peace that is to be found.

I have set a goal to write again. It has been a year since I've written regularly. It is time to write again... so, here's to the amazing chapter that is ending and to the new chapter that is just beginning.

Tuesday, April 08, 2014

A Small Description of My Shoes, and How it Feels to Walk in Them

Every once in a while I need to take a minute to remind myself what causes my physical ailments to, and to find he words to explain how it feels to walk with them.

I have three separate conditions that seem to intertwine themselves at times and make the overall outcome beyond description.

First, I have Chronic Fatigue Syndrome. CFS is caused by the Epstein Barr Virus that lays dormant in my system and flares at times and rages at others. Epstein Barr Virus is the Virus that causes Mono. So in essence, you could think of this "syndrome" as an endless case of Mono without the contagious factor added to it.

Second, I have a Mystery Condition that at times is classified as Fibromyalgia. But more often is classified as an unknown Auto Immune Disease. It most often shows it's symptoms within my Joints, my Gut, or in my Brain.

Third, I have a lovely case of Depression and General Anxiety Disorder. This is somewhat the result of genetics and most often inflamed by the stress and frustration of the first two conditions previously discussed.

Sometimes I am able to wrap all of these conditions up nicely and carry them in an invisible "backpack". that isn't noticed by those around me and is easily managed by myself and my family. Other times these conditions creep out and become a monster of their own that takes over my every day life and functioning. When this happens life can feel so overwhelming I can hardly breathe.

That is how I feel at this very moment.

But feeling like this is absolutely not an option for very long. Minutes... Maybe hours... And then I must pull myself together. Call upon the Powers of Heaven and force myself to take the steps that must be taken to perform the tasks and chores that must be done to keep the boat afloat.

Tuesday, March 11, 2014

Good Things Have Come! - Help for ADD

We have truly witnessed life changing "Good Things" this past week. If you read my previous blog post titled "Just Keep Walking - There are Good Things to Come" then you will know what I mean when I say, "Good Things."

The discovery that was made this past week was a long walk in coming. We finally found a doctor who would LISTEN to us as parents and also to our boys' teachers AND observe the boys, Before slapping a diagnosis on the boys that would label them wrong forever. The final diagnosis is Attention Deficit Disorder and Autism Spectrum Disorder more on the Aspergers Syndrome side of The Spectrum.

This diagnosis was not really a surprise to us at this point. We have been trying to cope and endure for years. However, we had become increasingly vigilant in finding medical help for Caleb because it was starting to take away from his "best self."

 So without further explanation I will sing praise for the latest "Good Thing" that has come in to our lives!!!  The boys started medication for their ADD this last week. After one day of obvious side effects, we cut their doses in half and our lives changed forever....

I have found myself just watching and listening to Caleb in awe this week. He has never been able to speak his thoughts and feelings so fluidly. Until this week I had NEVER EVER been able to hear about his day at school from his own mouth. Never been able to hear about what he did and didn't like from the lunch menu. We have never had so many still and calm snuggle moments with Caleb. Leif put it perfectly when he said, "He's Back."  It still brings us to tears sometimes.

Jakob's changes are less dramatic but still life changing. He is able to handle the stress and noise from his brothers better. He says that he it helps him at school. He just seems more at peace. Able to focus on one thing at a time and enjoy life more. It's truly amazing!

Friday, February 28, 2014

Just Keep Walking - There are Good Things to Come!

My heart is full tonight. I wonder what will spill out onto this as I write...

I have been working on a photo project this week. I'm trying to find just the right photos to make in to canvas prints to hang on our living room walls. We already have one large canvas print of two of our children... An artist at a photo shop gave us a canvas painting of our girls just after their funeral. It used to hang on our living room wall in Fredonia. We haven't hung it up here... We pulled out the smaller version of the painting and display it with their cabinet... So often I feel like they are a dream. Like something that happened so long ago that know one remembers except for my body...

This week I have been in bed a huge portion of every day. So incredibly tired. SO So Tired. Not the yawn, I need a nap tired. The bat crazy - pull my hair out - fatigue that could easily drive me insane kind of tired. I have been relived that there hasn't been pain that came with this fatigue... Until noon today. PAIN. Radiating pain. From the inside out to my skin.

Last night I started on Jakob's baby pictures. Year after year and then I moved on to Caleb's and to JJ's. The difference was so clear. The different person that I was when Jakob was born.  And the "new" me when Caleb was born. And all of the loss and heartache within that span of years.  Leif looks different too. There is a little less adventure and innocence in our smiles. I little more flicker of reality in our eyes.

I read an article today about a woman who lost her husband suddenly and was left a widow with 4 young children. She talked about how at the loss of her husband she felt sure that she had experienced "the Big trial." The one that would define her life and teach her all that she needed to learn in life. She then went on to say that it didn't take long to realize that the hardships of life don't stop coming just because we've experienced a tragedy.  Life does go on and trials do continue.  I felt a kinship with this woman and her realization.  I have pondered this deeply albeit subconsciously this week.

Our boys were officially diagnosed this week with Attention Deficit Disorder and Autism Spectrum Disorder. I've caught myself thinking about our girls and the fact that if they would have survived they would have struggled with serious health issues and possible brain damage. Today I found myself pondering the fact that God, our Father, must really know our limits. I don't really like thinking that I have a limit line. But I think we must, and He knows them. And for this, I must be grateful.

I must be grateful that my girls were spared the hardships of this earth life that can be so hard! I must be grateful for all that is so good in my life through the every day hard core grind of life, I must shout praises for all that is good. Otherwise, they will become swallowed up in the fatigue, pain, tears, ADD, ASD, and LIFE.

There used to be a time when I wrote my praises down on a daily basis. I feel sad that I don't do that anymore. I heard a song on the radio the other day and the words spoke to me and reminded me of my sincerest prayer:

Let them see You in me let them hear You when I speak
Let them feel You when I sing
Let them see You, let them see You in me

Who am I with out Your grace, another smile another face
Another breath a grain of sand passing quickly through Your hand
I give my life an offering take it all take everything - JJ Weeks Band

A strong and brave woman asked me how to overcome the enveloping struggle of chronic illness, depression, or heartache.  I took days to write her back my answer because it felt so flat and not profound enough. But it is what it is, and sometimes it is all we can do. My answer was "You just keep walking!" Step by step, hour by hour, day by day, week, month, year by year. You just keep walking! And as you walk you keep your eye out and heart open for the Good Things to Come. Because I promise you, they will!!"

If there is ONE thing that I have learned from all of the storms of my short life, it is that we are truly in the midst of angels. Whether they are from Heaven or on earth, we are never alone. Our Father in Heaven is real and He does not leave us to walk alone. Truly, there are good things to come!
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