Hey Friends--Desi, here. It has come to my attention that some of you haven't been receiving the weekly updates. I think Google thought I was spamming you & chopped some of you off the send list. I have sent an update every week since August 10 so I'll resend the last couple weeks worth so you can adore my sweet baby's pictures. Sorry for those who get double emails--just delete them if you've seen them. This week's update is from Chris. Enjoy--Desi
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I apologize upfront that I am not creative or witty when it comes to writing, like Desi, but I thought I would give Desi a break this week. Here is an update on Addie and reflective perspective from a father’s point of view.
Thursday we had a care conference with the NICU doctors and specialists to discuss Addie’s progress and future plans. The seizure activity increased this week, putting the brakes on any progress. No child can learn to suck when their body is either seizing or sleeping 24 hours a day. Let alone keep the tube feedings and meds down when your body is retching from all the convulsing. Her oxygen settings are low but remain unchanged due to the roller coaster breathing that takes place during and after each seizure. The neurologist’s assessment of Addie
is that she has Early Infantile Epilepsy Encephalopathy
…… which basically means her seizures may never be controlled. However, no one has given up hope yet, as we are on 6 of 14 drug options to explore. They did start her on another drug that she seems to be responding to but still needs to be adjusted to meet therapeutic levels. From an optimistic view, the NICU team did say if we can get her seizures somewhat under control, they are prepared to let her go home – even by Christmas. This would require a fairly simple surgery to install a G tube directly into her stomach, so she could be fed without the risk of her current NG tube coming out of her nose all the time.
The audiologist came and retested her hearing on Friday and confirmed that she has profound hearing loss. This equates to hearing a lawn mower or motorcycle as a whisper. We will have to meet with a specialist to see if hearing aids will help her. The audiologist said that even with hearing aids, she will never be able to hear normal conversation. They would just help her hear more environmental sounds, like a phone ringing or horn honking. Her cochleae (the snail looking part of the ear) are malformed, so only time will tell if she is a good candidate for a cochlear implant. Our family has much to learn about this new world Addie will experience as a special needs child. The kids are all very excited to learn a new language, and we have all started learning basic ASL signs. It makes you take for granted just the simple things, like having an everyday conversation with your child or teenager while you’re driving them to school. Will she be able to hear her older brother perform in the college symphony or band? Will she appreciate any of the music that is promoted and played on a regular basis in our home? After meeting with the audiologist I went into the Ronald McDonald Family Room to get some dinner. A cute little four year old with bright red monster slippers was playing near her wagon and IV pole while her mom got the two of them something to eat. The child’s chest staples from her recent heart surgery were very visible due to the loosely fitting hospital gown. I watched as another NICU father tried to engage the little girl in conversation. She seemed to pay little attention to him or his comments about her slippers. After a couple more attempts to get her attention, the mom returned and apologized for her daughter. “I’m sorry. She’s deaf. She can’t hear anythingyou
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saying to her.” Then the mother and daughter exchanged a few signs and headed over to find a place to sit down and eat. As I sat there watching this unfold, all I could think of was my future and the words that I knew I would be repeating hundreds of times, “I’m sorry. She’s deaf. She does not understand what you’re saying.”
I have to admit that the news this week has been challenging to process. It is tough enough to teach a child how to communicate when they are born deaf, but how do you do that if they are epileptic and their mental and physical development is delayed or challenged? What will her quality of life be like, if we cannot control the seizures? I think about the priesthood blessings that she has received and the surety with which certain blessings were pronounced. Have I been deceived? Has the blessings been revoked? Have we lacked the necessary faith? Have we not taken into account Addie’s agency in all this? Why Addie? Will her diagnosis change? If so, when? How long must she suffer? Did she choose this path and mission? Does she continue to suffer because of me, the doctors? Certainly, there has to be a purpose for the pain, a reason for this trial and an end to this difficult path. While I have never been bitter about Addie’s situation, my mind has been full of these questions. As time marches on, reality begins to replace optimistic outlooks and hope for a miracle abruptly turns to acceptance of things as they really are.
Thursday night, my confidence in my gifts and the priesthood began to waver and all the unanswered questions started to undermine my faith and hope in the future. I felt I no longer had anything I could put my trust in. Friday morning came early, as I could not sleep. After lying in bed for an hour I decided to get up and search for a particular phrase in the scriptures that kept coming to my mind. After a few minutes of searching, I found the one I was looking for.
[John 9:2-3] And his disciples asked him, saying, Master, who did sin, this man, or his parents, that he was born blind? Jesus answered, Neither hath this man sinned, nor his parents: but that the works of God should be made manifest in him.
I read it again, except in light of the Spirit.
And I asked, saying Heavenly Father, who is to blame, Addie, myself, the doctors, that she was born deaf and is constantly seizing? The Spirit of the Lord answered, do not blame your child, yourself, or the doctors, and especially your Father in Heaven: but know that the works of God shall surely be manifest in her.
My trust was immediately restored. I asked Heavenly Father to forgive me for trying to find blame and for forgetting whose child Addie really is. The spirit of hope and miracles lives on in my heart. Whether tomorrow, five years from now, or in the arms of the Savior Himself when He returns, Addie will be healed. I have no doubt. But this experience has really shown me that the works of God are manifest every day through the countless acts of love by His children in Addie’s behalf. Thank you for believing in Adelaide and supporting our entire family through all the ups and downs of the past few months. It looks like this journey may continue for a while, so we are eternally grateful that we do not have to travel this new path alone.
--Chris
