Ramblings of a sleep deprived parent.

A few lessons I've learned in the last 14 Months.

1. There is a saying 'If you fail to plan, you plan to fail”, but if you actually make plans and think you have your life all mapped out, GOOD LUCK, be ready to toss out the map and plan again on a moments notice.

2. An infant crying in pain is the most soul wrenching, annoying, horrifically terrifying, noise known to man (note: man not to include woman). I believe our failing criminal justice system could benefit from this one phenomenon, if it were not considered cruel and unusual to pipe sounds of a baby crying into the prison cells continuously. On a side note Henry's room is only slightly larger than a standard DOC cell.

3. Men still need deodorant, even if all they do is sit in a small room all day and do nothing physically active whatsoever. Yet my observations did not not yield the same results from the Female in the study.

4. Good friends are priceless, so are rhetorical questions. Am I a Good Friend to others?

5. Material things are just that, Material. Remember the plan of happiness. When you pass from this life there are only a few things you can take with you and none include material possessions.

6. What you can take with you:
Your knowledge and Experiences.
Your good deeds.
Sins you have not repented of.
Your eternal family relationships.

7. Your spouse should be your best friend, You should be your spouse's best friend.

8. Miracles do happen. But the Lord always requires faith is some form or another. Whether it be faith to believe or just faith to open your eyes and look.

When the people of Israel were plagued by serpents biting and killing many, the Lord commanded Moses to raise a serpent on a stick and then commanded the people to cast their eyes towards, or to look upon the serpent to be healed. Now I don't understand all the symbolism behind everything nor do I claim to be a biblical scholar but as I understand it the lord did not require the people to believe It would work, all he asked was for the people to cast their eyes towards the serpent that they might be healed. But as always in life some of the people decided not to look.

Sometimes we are just as bad off as those people who decided not to open their eyes and look. We go through life not taking the time to recognize the miracles around us in our daily lives. I recently became acquainted with a family in a similar circumstance who has decided not to open their eyes and although I am not in their shoes nor do I know the thoughts of their hearts they outwardly profess their disbelief in miracles or answered prayers. They believe in science, statistics, and in their Doctor's ability to do the best they can. I personally am very grateful for science, in fact, had this happened a few years earlier some of the science used on Henry now did not exist then. I hope the Doctor's are not reading this, but I am glad we do not rely solely on our Doctor's abilities, it scares me how often they are surprised at how well Henry recovers and progresses after their tests, treatments, and endless procedures. And Last I am glad we have ignored numbers and statistics.

Speaking of numbers, take a bite on this. 1 in 200,000 people get LCH but usually it is a localized condition resulting in a slight rash or small bone lesion. Less than 5% of people who have LCH have multi-system LCH involving 2 or more systems in the body. Of these it is estimated that fewer 20% have systemic LCH affecting skin, organs, and bone marrow,as in Henry's case. So if you do the math he has a 1 in 80 million chance of having what he has to the degree he has it. With those odds you can see why there is not a whole lot known about LCH and why every medical lab is not working night and day to find a cure for it. Of the limited information and studies available it is estimated that there is a greater than 50% mortality rate of multi system LCH in infants under 1 year of age. Most do not make it to their first birthday. Henry was diagnosed with LCH at 5 weeks of age. He was diagnosed with multi system LCH at 15 weeks of age. In March we celebrated his first Birthday!
He has undergone almost 12 months of mixed Chemotherapy and Steroid treatments and then on August 3rd he underwent a Bone Marrow Transplant and is doing fabulous. I am glad Henry ignored the statistics as well.

You can tell I'm tired by my rambling, which I rarely do but I am impressed to share a very personal experience. It happened a number of months ago, it was the middle of the night and my better half and I were at our wits end. Henry was crying and crying and no matter what we did we could not get him to get comfortable and sleep. I had several promptings I should give him a blessing but ignored them and instead gave him an extra dose of his Methadone pain medication. Now he was not just crying but screaming, that scream that churns your stomach and causes brain aneurysms. My better half suggested I give Henry a blessing but I had no consecrated oil after leaving my keys with the small vile at home. I opted to give another dose of Methadone. An hour later the screaming was even worse, for those who have never been in this situation it is hard to explain, you are frustrated beyond belief wanting to scream at the top of your lungs but knowing it would only make things worse, the frustration is not towards Henry but is still there because there is absolutely nothing you can do or say to take the pain away or to help. Finally my better half (who is much wiser and more spiritual than I, yelled (in a loving way) at me to give him a blessing. I gave him the shortest yet most spiritual blessing I have ever given, blessing him to sleep and be comforted. Henry screamed through the blessing until I closed it and said Amen. At that moment Henry quit crying and just sat there for a moment in Mommy's arms. She laid him down and he went to sleep, he slept the rest of the night without so much as a whimper. I have seen miracles and know the power of the Priesthood. I am trying to open my eyes and continually look towards whatever the Lord directs me towards.

Our belief in the Gospel, knowing Heavenly Father loves each and every one of us, and knowing He has a plan has helped our family more than anything else could.

Other than family, and a number of friends who comment from time to time, we really do not know who has been keeping up with and reading this blog. Since there may me a number of people reading who are of other Faiths or unfamiliar with our beliefs we would like to extend an invitation, if you are curious about our beliefs or just have questions about something we might have said in the blog please do not hesitate to ask. We are not meant to traverse this rocky rugged road we call life alone. J.