"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.