Purpose

I know that there are some people that question the point, or reason of Evelyn's life. There are some that question why she has had to go through so much pain, and to top it off with the prospective that her life does not seem great since she may not ever have a "normal" life. I know of a woman who through working in the PICU lost her faith in God, for how could God allow these little innocent children go through so much pain?
I can understand their questions, and I can even understand their unbelief of God. But I will tell you, because of my experience with Evelyn thus far, my faith in God is strengthened. I cannot say whether it's because I had faith in God prior to Evelyn joining our family, or if it's because knowing Evelyn I can see the joy she has and the promising future she has in this life and the next. When you meet Evelyn, there is no denying that she has a spirit that is bigger than her body.

Without God, I would be furious about Evelyn's medical conditions. I would feel the unfairness of life, the bitterness of the human body.  I may even fail to see any reason for her to live. But because of my faith, I know that there is a purpose to Evelyn's life. I know that she has a future, as well as a past, that does not include the frailties of her human body. I know that on some glorious day she will be Resurrected, she will have a perfect body. (though I think her body is pretty perfect as it is)

Without God, this physical suffering that Evelyn has gone through seems extremely pointless. It would feel like a bitter hand that she drew. But because of my faith, I know that there are more reasons to these experiences than I can understand nor see at this moment.
During a rather hard time in the PICU, when Evee was going through pain and we had no idea of what to expect, I had a very sweet feeling come to me as a thought crossed my mind. I will share it with you, but please realize that these are my thoughts, not necessarily doctrines nor specific teachings of my church, though I did come to these thoughts because of what I have come to learn and understand about God that has been taught in my church and consists of its doctrines.

We believe that sometimes when a person has lower-functioning mental capabilities, it is because they were part of the more valiant followers of God while we were in Heaven. They may have been the ones that fought diligently against Satan in the War of Heaven, the ones that proved themselves during their time in Heaven that God decided that they did not need to be tested during their earth life for He already knew what they would choose and they were already worthy and ready for the progression.
Now, I do not know what Evee's mental capabilities will be, as thus far she has been age appropriate, but I do realize that there is a great possibility that she will have mild to severe mental delays.  With this in mind, the thought came to me about Judgement Day.

I do not look upon Judgement Day as a day of "I told you so"s, nor a day of harsh punishment from God. I really think that our own experience of Judgement Day will have to do more with how we lived our own lives.
God is not only the creator of the earth and heavens and everything in them, but He is also Our Father. I believe that when we face him on the Judgement Day we will feel the feelings of someone that is about to face a their perfect father who loves them and they love in return. I feel that our joy and sweetness of the day will come in consequence of the good choices we have made. I also feel that the sorrow that we will feel will be because of the poor choices that we made, because we will have to face our loving Heavenly Father and be accountable for the wrongs we have done.
I do believe that everyone will have at least some joy and some sorrow to some degree. The amount thereof is dependent on the choices we make. But regardless of how hard we try, I think everyone will have some sorrow, no matter how small, for we will remember and realize the glory of Our Father and His love.
These Special Spirits, one that Evelyn may very well be, will not experience the same sorrow. We believe that these individuals, through the Atonement of Christ, are perfect, are free from sin, just as a little child is.
As I watched Evelyn endure pain, I realized that maybe she is having this experience so that one day, when she sees me and others going through the Judgement Day, she will have more compassion for she will be able to say, "Yes, I know what pain is, and this person has it, and for that I am so sorry". I realize that none of this is doctrine, but I do feel that it is close to the workings and love of God.

In the Sunday School class that I teach for the 12-14 year-olds, a girl brought up a scripture. It was Alma 7:11-12, and speaking of Christ is reads:

 11 And he shall go forth, suffering pains and ^aafflictions and ^btemptations of every kind; and this that the word might be fulfilled which saith he will ^ctake upon him the pains and the sicknesses of his people.

 12 And he will take upon him ^adeath, that he may ^bloose the bands of death which bind his people; and he will take upon him their infirmities, that his bowels may be filled with mercy, according to the flesh, that he may know according to the flesh how to ^csuccor his people according to their infirmities.

I was really touched by the words that Christ "will take upon him the pains and the sicknesses of his people". So whether my view of the Judgement Day be accurate of not, it really does not matter. I may not know the real purposes for Evelyn's pains and my trials, but I trust that there is a purpose. I trust that I do not need to know now, nor may I never need to know during my time on earth, but I do know that it is all okay, that someone with a much better understanding has not forgotten me nor my baby.

Without God or Christ, Evelyn's life and experience has no meaning, just an unlucky chance of fate of DNA being deleted. But because of Christ and His Atonement, Evelyn has purpose. One day the unfairness that is felt because of her situation in life will fully be overcome by Christ, He will more than make up for her challenges and trials. 

And to Him is where I rest my faith.