This beautiful face...

This beautiful face...

This is the beautiful face of my baby girl. The light of my life, the life in my breath and the reason I know that tomorrow will be even better than today. Oh, and the one that tells me daily I am HER best friend. She is the one that makes my life the true blessing it is. So, imagine my heartbreak today when we found out she HAS cystic fibrosis.

Silence…then calmness…then uncontrollable tears…and then the fear. What have I done to my babies? I can’t help but feel responsible in some way. As irrational as that sounds…it truly is a battle in my mind. CF…really??? Dealing with me having this disease is one thing. My baby girl having to live with it and battle it is another.

I got off of the phone with our genetic counselor…who is really not just our GC, but has become a good friend and the first thing I did was call B. I was devastated and I couldn’t imagine waiting for him to get home to tell him…and I just needed to hear his voice at that moment. The best thing about my husband is that I know we were truly meant to walk this journey together. The hills and the valleys and every step in between…together. Today was no different.

After I talked to B I decided to call one of my cystas because I knew she would help calm my fears and she would also be able to answer some questions I had. Questions about keeping us both healthy together and about what level of “normal” is really safe for her. I am already a paranoid germ freak, so can you only imagine the thoughts that raced through my head…I was thinking “bubble boy” here people!!! All jokes aside, I called Somer because in my mind she is a guru on CF. I was a crying mess when we started talking and as we hung up I had a feeling of content. I would have probably raised Ellie with the same guarded parenting with or without CF. When you bury one child I think you instinctively try to over protect the others. Now, I have a real reason to be so terribly anal…so, don’t expect to come to our house without hand washing and sanitizing at the front door ever again!

Today my journey has been filled with trying to get Ellie into the pediatric CF guru at Texas Children’s Hospital. Why do they make appointments so hard for parents to make? Call this number, fax this paper, call your doctor, send this info…on and on. All I want to do is get my baby seen and figure out what course of action we will have to take to give her a full healthy life. Can you sense the frustration?


While we wait to have Ellie seen at TCH we will have another circus to live…IVF.

Yes, despite the heartbreaking diagnosis of Ellie’s CF, we are still going through with the IVF with PGD. I can’t explain why I feel so calm about this decision…I can only say that God has given me peace about this whole battle with infertility. If it works we will have a baby that has a little bit better than a 98% chance to be perfectly healthy and if it doesn’t work…well, we have the most precious, beautiful, gifted, little miracle of a baby girl to raise.

I am sure the sky will fall again…it just seems to be our luck. However, in the meantime I am just going to live. Maybe it’s naïve or maybe I have been so very blessed to have the gift of “hearing” God’s will for my life, but I don’t feel broken by this...I won't feel broken by this!

My soul finds rest in God alone; my salvation comes from him. He alone is my rock and my salvation; he is my fortress, I will never be shaken. (Psalm 62:1-2)

Thank you for continuing your prayers for our family. This journey has definitely strengthened my faith. However, knowing that we have so many friends out there thinking about us, praying for us and keeping us close to your hearts is a huge source for our strength. We thank you and beg you to continue to lift our family up in prayer.

Blessings,
Angie