Broken

I have rewritten this blog several times because I just can't put into words how I feel.  Then, after a particularly low moment today, I thought - broken.  That is how I feel.  Broken.  I have a daughter that is broken and I can't fix her.  I have a heart that is broken that I can't mend.  My life and my family's life as we know it is no more.  I just feel broken.  And it is a terrible feeling.

We saw Dr. Kanga on Wednesday to discuss Lilly's diagnosis/prognosis.  It was a four hour appointment that involved introductions to our CF team, discussions about the disease, and discussions about her treatment.  Frankly, although they are introducing us to this process very gradually, it was information overload and I was so numb that I remember very little about it.  But in a nutshell, we have a team of doctors including Dr. Kanga, who is our primary pediatric CF doctor until Lilly turns 18 and then a team of adult CF doctors should she need to continue her care.  We have a CF nurse, Barb, who you have heard me mention before.  We have a dietician who will help us with her growth and diet and a respiratory therapist who will help us with her respiratory therapy.

Lilly will start her treatments gradually.  She takes one pancreatic enzyme prior to every meal.  I usually take apart the capsule and pour the beads into applesauce.  This provides her the enzymes necessary to absorb the vitamins and fats that her body cannot do naturally.  An indicator that she is getting enough enzymes is her BM - her BMs are much more formed and no longer greasy - a good sign.  Lilly must also take a daily ADEK vitamin that is frankly just gross - it is red and stains everything.  A small price to pay though to get her the vitamins she needs.  We also have to mix 1/8 tsp. a salt into her formula daily as she loses more salt than most people through sweating - hence the reason that this disease is often characterized by a child that tastes salty when you kiss them.  To date, she has not tasted salty to me, no matter how many times I have licked her.  Lilly also must have chest percussion therapy twice a day while she is well, four times a day when she is sick.  Because she is so small, we cannot do the full gamut of the therapy - one day I will post exactly how we do it.  But for now, we use a special instrument to "burp" her at 4 spots on her chest and pack for approximately 15 minutes a day.  The purpose of the chest percussion therapy is to loosen the mucus in her lungs.  The dietary treatments are not very burdensome.  The chest percussion therapy is daunting and overwhelming, particularly when you are trying to do the therapy prior to a bottle (she cannot undergo CPT until an hour after she eats and she is usually trying to go to sleep at that point) with a screaming baby and a clinging, crying 2 year old. I hear that this eventually becomes second nature, but we aren't there yet.  Since beginning her treatments, Lilly has gained a pound and a half in a week's time - she is up to 8 lbs. 5 oz., which is a good sign that the treatments are doing their job.  Breathing treatments may be (and I understand in talking to other mothers of CF, are likely to be) in the future, but Dr. Kanga said that he wants to introduce us to this gradually to make the process easier.

We will see Dr. Kanga monthly for the first 6 months as Lilly goes through a lot of changes.  Our visits will involve chest x-rays, cultures, and education about CF.  We will eventually go to seeing him every 3 months, regardless of her health.  Essentially, we will continue to see our pediatrician for non-CF related issues, but we are to contact Dr. Kanga whenever Lilly gets sick with respiratory illnesses - and it is inevitable that she will.  He will then tell us whether it is an illness for which we need to see him or an illness that can be treated by our regular pediatrician.

As for prognosis - we don't know.  They cannot tell us how severe her disease will be.  We can only wait and see.  But with the developments in treatments for CF, Dr. Kanga and his team were very positive about her future.

While at Dr. Kanga's office, we were introduced to a beautiful couple, probably our age, who have a daughter born with CF that is 13 months old.  While so many have offered wonderful words of comfort and love to us, I cannot describe what it felt like to meet a mother who could look into my eyes and know my pain.  She and her husband were so kind.  She said something to me that has resonated this entire week - "take time to grieve."  It was like I finally got permission from someone who truly understands what I going through to feel everything I need to feel to get through this process.

My feelings are not pretty.  I am very angry.  I am angry at God for doing this to my family.  I don't really care that he thinks I can handle this - I don't want it.  I don't want it for myself.  I don't want it for Lilly.  I don't want it for any of us.  I feel as though God has stolen from me time to bond with my beautiful baby.  Although I know that He did not do this to me out of spite, it is hard to suppress these feelings.  So I am allowing myself to feel them and hope that He understands.

Despite being surrounded by family and friends, I feel so alone.  Everyone offers so much help and comfort but despite it all, only those who have been through something like this understand.  I hope those that do not understand never have to.  I cannot seem to pull myself together - I spend hours crying at a time.  Add nights with a toddler who is not sleeping very well (she feels the stress here too), a baby that is still not sleeping through the night, and a husband that cannot be here during the week, and my nerves are shot.  I yell at the drop of my hat.  Olivia does the slightest thing and I snap.  I am not myself and I hate it.

But I am trying to be patient.  I need time to grieve.  I need time to cry it out.  I need time to scream and throw things.  I need time to feel the pain of being broken.  Only then can I start to mend.  As with all things, you cannot rush the process.  I have accepted that this is grief is not something that I can finish tomorrow.  I am navigating it the best I can.  And I know that I will eventually come through it and start to heal.  How do I know this?  Because when I feel like I have hit rock bottom, I look at Lilly and she smiles at me.  And a little part of me heals.  Despite it all, she doesn't know anything is wrong.  As far as she is concerned, this is life and she will go through it with a smile on her face.  She reminds me that this isn't the end - this is just the beginning.

So please be patient with me.  My posts will get better.  I will get better.  We all will get better.  But unfortunately this is a process and I am taking my time to grieve.