"We Are Doing Okay"

Many people have asked how we are doing these days.  All I can say is that we are doing okay.  We aren't doing great - to say so would be lying.  We aren't doing terrible either.  We are doing okay.  We have good days and bad days.  On the good days, most of the moments are as if Lilly was never diagnosed with CF.  The days are never perfect - I am always reminded of her diagnosis by feeding time, when I give her the enzymes that she requires, or during her chest percussion therapy (which I am slowly learning).  Some days, it doesn't seem so overwhelming.  Other days, it is suffocating.  Lilly caught a stomach bug that Olivia brought home shortly after her diagnosis and I spent several days barely sleeping I was so worried about her.  I was so anxious I felt physically ill myself when Lilly suffered through it.  I studied every dirty diaper, fought her to take every ounce of formula that she clearly did not want due to an upset stomach, and made multiple phone calls to her doctors.  A tiny little virus, which was a minor problem with Olivia, tied my stomach in knots with Lilly.

This experience has made me wonder if I will always be like that with Lilly and I think on some level I will be.  I think I feel that way because I know, deep in my heart, what really scares me about this diagnosis.  I have had a hard time articulating it, but I think if I say it out loud it will help me deal with it.  While I may not like, but can handle the treatments, that Lilly must do every day for the rest of her life, what really terrifies me is waking up and losing her.  I am terrified that CF will cause me to bury my baby one day.  People continue to try to comfort me with stories of people living well into middle age with CF, but all I hear is the underlying message - they only lived to middle age.  The median age is mid-30's - to me, that means some lived well past their 30's but others didn't even make it to their 30th birthday.  I know that any one of us could lose a child tomorrow - healthy or not.  But living your life, day to day, knowing that your child has a disease that could kill her before you pass on is...well, it is...I just don't have the words. 

While I know I shouldn't focus on this, I can't help it.  The thought is always with me.  I am tired of trying to bury it - it isn't working.  So I am not going to pretend that it doesn't exist.  But I do find comfort in confronting that fear by saying (or typing) it out.  The only way I know to deal with that fear is to acknowledge it.

The only other way I know to fight that fear is to focus on the blessings that have been bestowed upon us since Lilly was diagnosed.  I cannot even describe the overwhelming support we have received - from family, friends, co-workers, and total strangers.  The emails, voicemails, texts, letters, cards, etc. - they have been flooding my mailboxes.  There is no possible way I can thank everyone for what they have done for us - I hope those that read this blog know how thankful I am.  People have stepped forward to help us financially, emotionally, and physically - the wave of support has been very humbling.  I had no idea how many people cared and it truly warms my heart.  It reminds me that no matter what we endure, we are loved.  We could not be more blessed.

I have also spent many hours reading emails and talking on the phone to others who have come to grips with raising a child that has a chronic illness.  Their stories, and in particular their support as we go through this grieving process, has been incredible.  I don't feel so alone when I speak to them.  When they tell me about "being in a hole" after hearing the diagnosis for their child, I know they understand and I know I am not alone. 

Moreover, I am reminded, again and again, that Lilly is very special.  Instead of focusing on the negatives that a CF diagnosis may bring, I am reminded by those raising children with special needs of the joy that their children bring to their lives.  I was directed to a poem called "Welcome to Holland."  I encourage anyone to read it -http://www.journeyofhearts.org/kirstimd/holland.htm - I found it extremely honest and uplifting.  I have to go back to it again and again to remind myself that in life, attitude is everything.  While my attitude and perspective may not be very good right now, I am striving to improve it and I know I will get there, but at my own pace.

Finally, many of you have been asking about our nanny search.  It has been an exhausting process - I probably had over 50 applicants and interviewed only 3.  I hired a lovely young lady named Ashley on Monday and she is starting with us next week during my last week of maternity leave.  I hope to be able to spend the first half of the week at home with her showing her how things work around the house and helping Olivia acclimate to the situation.  Then I hope to use the latter half of the week to take some time for myself to prepare for my return to work, which I expect to be difficult.  I explored options of extending my leave but after hiring a nanny, I decided that the best course of action for me was to return.  Although the grief from receiving Lilly's diagnosis is still very fresh, the grieving process is going to take some time and I don't know when we will truly pull out of it.  I think the best way to deal with it is to return to work and try to weave in our new life the best that I can.  I am very anxious about it.  It is hard enough to return to work after having a baby.  It is even harder returning knowing that your life has been turned upside down and that you are turning over the care of your children, one of which you know has a chronic illness, to another person for 8 hours a day.  My mother's guilt, in turning over that care to another, is magnified by Lilly's diagnosis.  But I know myself - I am not and never was meant to be a stay-at-home mom.  I am just not good at it.  So I will return starting in March.

Thank you all for continuing to keep us in your thoughts and prayers.  We are doing okay and I hope that soon, I will be able to report that we are doing much better.

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.

My Daughter Has Cystic Fibrosis

It is official.  We went to UK early this morning for a second sweat test.  Dr. Kanga called us shortly before noon to let us know that it was positive.  We are, in short, heartbroken.  We have been preparing ourselves for this result for a long time, but that doesn't make the news any easier to bear.  I really don't have words to describe how I feel - just a gut wrenching grief over the diagnosis.

We will meet with Dr. Kanga in the morning to discuss the diagnosis and treatment.  Hopefully then we will have a better idea of the ramifications of this diagnosis.