A Father's Perspective

Dear Annie,

I have been waiting for the right moment to write you and I think now is that time.  I can't believe that you have already been with us for more than five weeks!  You are growing bigger and stronger every single day and your mother and I can't seem to get enough of you.  Having you here has been an absolute roller coaster with highs and lows, and as your mom has mentioned multiple times, "each day is different."  Today was one of those days that really challenged our strength and tested our faith.  

Annie, we have been patiently waiting for the highly anticipated meeting with the neonatologists, neurologists, geneticists, nurses, social workers and many more.  We all gathered in a room at the hospital to discuss future procedures to treat your episodes, help improve your breathing, and determine a long-term plan.  I don't think your mom or I were prepared to hear some of the things that were discussed.  We began the conversation talking about how your episodes have not improved with some of the medication that they thought would help.  We then continued to talk about the possibility of a tracheotomy that would help to "secure" your airway and would help with developmental progress.  The doctors were telling us things what we already knew, and I could tell they were trying to tell us something without directly saying the words.  It wasn't until about 15 minutes into the conversation that it hit me as to why were really there.  Even though it wasn't literally said, the group had called the meeting to tell us that we should start to consider what we would be willing to do to sustain your life and to help us understand that if life was sustained what that would mean for your quality of life. If it is confirmed that you have Stuve-Wiedemann, not only is it rare, there only being 25 recorded cases. But most cases don't live past the age of one, due to respiratory problems. And even if they do, the quality of life is minimized.  Annie, you have no idea how hard this is being your dad and having to hear something like that.  I want to assure you that your mother and I will exhaust all possibilities to have you here with us on this earth, and as your dad, there isn't another option.  

Before making any long-term decisions we want to know more about you and your future my sweet girl.  In the short term, we will continue a safe path to help treat your current episodes.  Your mom was inspired when she told me that your episodes only got worse when they put in the smaller breathing tube, so we're going to have them put a larger breathing tube back in.  The nurses agreed that you have outgrown your smaller breathing tube, told ya you were getting bigger ;) We will see if that will help the severity of your episodes.  We have also ordered for a large genetics test that will hopefully help us determine what particular syndrome you may have.  This test will include testing the genes historically associated with Freeman-Sheldon Syndrome, Schwartz-Jampel Syndrome, and Stuve-Wieddeman Syndrome.  The test could take as little as 2 weeks when testing specific genes or 4 months when testing the entire genetic strand.  We hope and pray that this test will give us more answers about how we can treat you.  We also concluded that ordering a tracheotomy isn't the best thing for you right now and both your mother and I feel strongly about that.  We don't think that putting you under any more stress is smart, especially if it's not going to fix these episodes you've been having.  As a group, we agreed to move forward with this plan and evaluate your progress in one months time.  

Annie, I love you with all of my heart.  A father's love for his daughter is pure and complete, I didn't know this until now, thank you for teaching me this.  You have already taught me so much about what life truly means and you have only been on this earth a little over 5 weeks.  I have been constant and calm through this process (sometimes it drives your mom crazy as to why I am so calm).  I think the reason why I am at such peace, is because of my knowledge of God's plan and understanding with clarity the true meaning of this life.  I have comfort in my knowledge that God lives, He is all knowing from the beginning to the end, He knows me and our situation, and even though my plan may not be His plan, it will all work out the way that it is supposed to.  This basic knowledge gives me great peace.  I have had multiple people asking me how I'm handling this the way that I am and the truth is, I can't take the credit for that.  I have a pure knowledge and testimony of prayer and fasting.  I have never felt stronger than I do now because of those that are praying on our behalf.  I am eternally grateful for those that have offered their thoughts, prayers, support, and charity, we truly couldn't be doing what we're doing without them!  I know that I will not receive all of the answers as to "why" we're going through this together but I have learned some things.

I have been striving to understand what I need to learn from this very unique situation and I wanted to share that with you, my sweet girl so you can read it some day.  I know without a doubt there is a divine purpose behind what is going on.  Annie, you have touched so many lives and you haven't even moved more than a foot from your Incubator.  You are an inspiring story to many. People that we know, and people that we don't know.  You have inspired people to have more hope.  You have helped people have more faith.  You have caused people to have more love and compassion.  You have taught people to be humble and meek.  You have shown people what true love is.  You have done a great work in such a short amount of time.  Knowing what I know now, I would choose to go through this 100 times over if it meant that more people would find a way back to their Heavenly Father.  I was talking about this with my Mission President and he reminded me of the passage in John 9 that talks about how Jesus heals a man that was born blind.  When they passed the man, Jesus' disciples asked who had sinned, the man or his parents.  In verse 3 Jesus explains, "...Neither hath this man sinned, nor his parents: but that the works of God should be made manifest in him." Jesus went on to manifest the power of God and healed this man.  I strongly believe that God is using you to manifest his power and to work miracles, some we can see, and some we cannot.  You have been, and will continue to be a miracle for many.  I have faith in that!  

  

Although I have been constant and calm through out this process, that doesn't mean I don't get scared.  In fact Annie, I'll tell you a secret but you can't tell anyone, k?  I have been calm through out this process with the exception of a couple times.  It wasn't until today that was fearful.  I am terrified of the day that I have to decide FOR you what "quality of life" is. I hope your mother and I never have to be the ones to make that decision.  We want the absolute best for you Annie and we will do whatever it takes to bring you home so we can live a long and fruitful life together.  I love seeing you as much as I possibly can, even though it's hard seeing you in the situation you're in.  I pray for you night and day and am faithful that ALL will be okay.  Until the next time I see you, I love you sweet Annie, you are my inspiration. 

Love,

Dad