Goodness

I wanted to have my post about Aidan's welcome home put on here first, but I just have not had the time.  Aidan's need for 24/7 nursing care has taken most of my time.  We still have not found the right nurses to be our home, so I'm doing almost all of his care.  And frankly, both he and I would rather I be the one doing it.

So, as I stated before- lack of time! lol

In all this, while needing to get back to the Drs myself, my family and friends see this and so very often say, "I don't know how you do it."  Well, today, I am going to attempt to explain how.

I am not eliquent, am having seizures, and am severely sleep deprived, but I will do my best.

We've been through darker times.

Not harder. Darker.

When I felt the weight of what was happening, but felt like no one but a very few choice cared.  Feeling alone magnifies trials and is so unnecessary. It was when we lost Clayton Dominic, and I tried hard to not dwell on it here.  My poor mother took the brunt of all that, I think.  I called her everyday, clinging to her gentleness. I felt like a leech actually. lol 

I had such a desire to focus on others needs when I could get away from my responsibilities. Some days I did well, others not so much.

We'd had such a long run of really big trials.  I was wondering why my prayers weren't being answered when other's were. I wasn't doing anything wrong.  I was not asking for the wrong things.

We hear the whole "in His timing" phrase a lot.  We all nod our heads in agreement, but when it comes right down to it, underneath it all, it still hurts.  We still take it personally when others get their's first while we are at the back of the line and have to wait and wait.

This is when the scripture Genesis 30:22 formed such meaning for me.

The fact our names match is only slightly creepy. ;)

Then I got a phone call from someone I didn't know, but apparently lived right down the street from me.  Though we attended the same church, it was such a large congregation.  We couldn't attend very often, I really didn't know her, nor did she know me.  My name had come to her mind over and over when planning what was, I believe, to have been her second annual fundraiser called Make It For Maggie.  This was not long after we'd found out the boys have a severe neurodegenerative disorder.  So when she heard my name in a church meeting, she asked, "who is she??"

That is when light started to show through a little, and little by little, the darkness has lifted.  Did it make the problems go away?  Oh my gosh no!!  Did it make them easier?  No, no, it really didn't. But I get through it because of people like her, and my friends Mary, Lexi, Mindi, and tender neighbors Missy, Katie, Rachelle, Staci, and many MORE who slowly but surely became a part of my life. I can't list you all- please don't be hurt if I haven't put your name here, I have not forgotten you!!!

They are angels doing what He would do, if He were walking among us right now.

We are not meant to do this alone.

When Aidan was dying in the hospital, and I was pleading for his life, the outpouring of love and prayers and warm wishes was incredible.  I sobbed many tears, knowing so many cared about my little man.  I received messages about how he'd changed lives.

Again, we are not meant to be alone.

My now friend who had done that fundraiser, has been through some really rough stuff since!!  Her friends, family, neighbors, and complete strangers have contributed in ways to bless her life.  She wants to pay it forward again.

For her 40th birthday, she is doing another fundraiser.  This time with 4 recipients.  Aidan would be one of the four, depending on how people donate.

Here's the link to the fundraiser.

http://www.youcaring.com/other/-4-x-40-000-160-000-of-goodness/174724

And here is what one of my very sweet friends wrote up for it.

I believe that some people need challenges and trials in their lives in order to turn their hearts toward God, and I believe that some people agreed to have certain challenges and trials in their lives and praise God through it all in order to turn other people's heart to Him. Rachel and Lincoln, along with their precious boys are just such people. Rachel and Lincoln are two of the most humble, kind, gracious and self-less people you will ever meet. They have been given tremendous mountains to climb during their journey on this earth. They have been blessed to be the parents of four beautiful boys, one of which is waiting for them in heaven. Their other three boys have serious health problems. Their oldest, Aidan, is 9 years old. He has been diagnosed with Lennox-Gastaut Syndrome. It is the most severe form of childhood epilepsy. It is extremely rare, with one retrospective study estimating the annual incidence of LGS at 0.002%. LGS is characterized by daily, multiple seizures of varying types, larger than any other epileptic syndrome. The wide range of seizure types can include Tonic, Myoclonic, Tonic/Clonic, atonic, atypical absence and non convulsive status seizures. 78% of children with LGS have an underlying cause such as brainlesions, genetic abnormalities, hereditary metabolic disorders, encephilitus, meningitus, brain injury or history of infantile spasms (West Syndrome). In 22% of cases, there is no known cause. A cause has not yet been determined in Aidan's case. The onset of seizures usually begins between 2 and 6 years of age, with an average onset of 3 years. Over time the child will have multiple seizures that are resistant to treatment. Multiple anti-convulsant medications are usually needed to decrease the frequency of seizures, but complete seizure control is very unusual. The combination of multiple medication side effects and multiple daily seizures take their toll on the child and causes a progressive decline in cognitive, physical and social development.The prognosis of these children is very poor. There is no known cure for LGS and a future free from seizures and normal intellectual and/or physical development is exceedingly rare, leading many Neurologists to identify Lennox-Gastaut Syndrome as a catastrophic diagnosis. Aidan's health has been declining over the past years and in January of this year, he contracted pneumonia in both lungs. There were many complications due to his already fragile state. He had a tracheotomy done and is now on a permanent ventilator as well as a permanent feeding tube. After over 2 months in the hospital, he was able to come home last month and is currently on hospice care.

Their second oldest, Jacen is 6 years old. He has been diagnosed with cerebral palsy with a seizure disorder. He has not been diagnosed with LGS, although his behavior and decline in health is mirroring what happened with Aidan. 

Their youngest, Damon, is 4 years old. He has been diagnosed with epilepsy.

All three boys have varying degrees of developmental delays and regressions. They also all have a body temperature dysfunction, where they can't regulate their body temperature so they can not play outside, or over-exert themselves in anyway. The specialists haven't fully diagnosed any of the boys, but they do say that they are dealing with a neurogenerative disorder, that all the boys have the same thing and are just at different stages.

On top of it all, their angel mother Rachel, was diagnosed a few years ago with epilepsy herself. So she has her own migraines and seizures with all the side-effects to deal with on top of pouring every ounce of energy she has into caring for her boys and all of their needs.

Despite having more challenges than most people, the Lears are happy, grateful, giving, and positive people. They are most deserving of any and all good that could come their way.

                                                        M.L.

My dear friend that wrote this is very complimentary, and I feel like her compliments are really a reflection of herself... she's pretty much awesome!

So there it is.  Our story behind this.  The other three recipients are each special in their own way too.