Sunday, January 9, 2011

Results

I know so many of you have asked about the results we received from Faith's report. So, trying to hold some of the difficult details, I would like to share them with all of you-those of you who have lived this with us. I simply ask that you would continue to lift our family. You have all become dear friends and so many of you leave a post or send an email at just the right time. Oh how I thank God for you daily!

We received the results two days before her due date. I'm so thankful looking back on this season in our walk that everything happened at just the right time. My Lord has proven over and over to me that His timing IS perfect. I truly do need to let go and let God. We sat in the familiar genetic counseling office with our sweet counselor, Sandra. She has an amazing way to take a 42 page report full of medical lingo and make it completely understandable in an honest, yet gentle manner. I pray for her often because of the burdens she must bear for her patients. I pray the Lord lift them from her sweet shoulders and bless her with peace and gratitude.

At first sight, the report gave us no information. I do now know why I need to stay quiet for a while. The Lord needed to show me some things about this to share with you. Let me start with the details and I will share what God had in store for me in a bit.  Faith did not have a neural tube defect. She had a brain abnormality in which the brain does grow and divide into the needed hemispheres and lobes. Her heart, intestines, and major veins did not develop properly. So many of the important parts of her were a mess, BUT, her precious fingers were perfect! This is actually what has the geneticists stumped. There is no 'diagnosis.' There is no definitive answer. There is no cause. There is no prevention. For those of you who have so sweetly read my posts, you know this was not easy to take. I desperately wanted answers and percentages and a 'plan' for prevention. We did not get any of these. We do know that, since we have been blessed with Faith, we are at a higher risk for something like this to happen again. However, because Faith had so many complications, the doctors believe that there is a genetic tie. Long story short...we could have a 3% -25% chance of this happening again. We have a one in four shot of facing this past year all over again...daunting information.

I felt scared, lost, exasperated, and beat up when we left Sandra's office. It brought the devastation of these past few months to the surface and I hurt for my little girl like the day she was born. I was heart-broken to hear all the difficulties she would have faced and thankful that God took her home quickly so she wouldn't hurt. My goodness, we hurt. We have a huge hole in our hearts that belongs to our second child and it will never be filled with anything or anyone. The hole will stay there forever, but we must love to overcome it. I know this now. Our hearts will grow to compensate for the lost part and we will love more deeply on this Earth because we have a hole the size of Faith Marie in our hearts. My dearest friends, I am honestly thankful for the hole she left in my heart. I am forever changed and forever marked by my daughter.

Apparently, God has more lessons for me. How I love learning His ways! You see, from the time we found out Faith was not made for this world, I have been praying that the doctors were wrong. Hear this please....the doctors WERE WRONG! God did hear my prayers-our prayers. The doctors had Faith all wrong. It took me a little bit to see this and hear Him singing His truth over me. Faith did not have a neural tube defect like the doctors were planning. Every report we ever saw had the neural tube defect listed as the main source for her to be 'incompatible with life.' They were wrong! Faith's spinal cord was perfect. So, what does this mean for us? This is the part where I know our Father is sitting on His throne with a smile whispering 'trust Me.' I cannot do anything to prevent this from happening again. I have been taking folic acid, DHA, and prenatal vitamins because the doctors thought Faith had a neural tube defect. Since the results have come in, I have been taken off the DHA and folic acid. There is no need to eat differently, take any meds, or even stand on my head (I have offered to do this if the doctors would promise it would help!). I can do nothing.  While my initial reaction was a bit of frustration, I am now thankful. There is a hefty burden my Father has lifted from my shoulders. I cannot blame myself if I forget to take meds one day....I am not in control.  Ouch-even typing those words hurts my fingers!

While I would love to move all the chess pieces and line them up perfectly (color coordinated, of course), I cannot. The pieces are not mine to move. I am HIS. He is in charge. These are His chess pieces and I would only mess them up if I touched them. So, I sit....and I pray. Isn't this what He asks us to do? Our Father has only asked relationship of us. He wants us to have our knees to the earth and trust Him. He has our victory in mind...His glory is at stake. I am fully aware of my paralyzing fears and trepidation for these next steps in our journey, but I know that fear is not of God. The moment I feel the fear and darkness begin to grab my spirit, I remind myself (usually out loud) that this is not of Him and I pray-pray hard-for Him to wrap His arms around me and strangle the fear.

We do not know what our future hold as a family. We do know that the doctors have recommended that we try sooner than later if we are wanting to have another child. The doctors have advised us to 'act normal.' No special meds, no special visits, just normal. Ha!  If they only knew-we are still searching for our new normal.  If we do try again and are successful, we would not know if there were any abnormalities until 16-18 weeks. We found out Faith's prognosis at 20 weeks. I know what that feels like and I know how attached we would all be to a new little one...

We will see what God has in store for us. I am choosing today and every day of this continued journey to trust Him. Fear is something that creeps into my daily life right now, and I will choose to pray it away daily. I trust whatever He has in store for us because I know it is good. It may hurt and I might think I can't make it, but I will remember this time and this journey. My Lord has proven His faithfulness and He has kept His promises. I will continue to pray for daily bread and I am adding breath for each moment to my prayer. The fear, the grief, and anxiety tend to momentarily take my breath away, so I am praying for bread and breath. God can do this and He will. Thy will be done, Lord, not mine. I imagine the beautiful tapestry He is weaving of our lives. I picture Him using our tapestries for others to see His glory. I would be so sad to not have Faith's thread running through mine. She is a huge part of who I am and I would have missed out on so much. I am sure her thread is vibrant in the tapestry of our life.

I wonder what would happen if we could all turn our tragedies, frustrations, losses, and sadness into a brightly colored thread woven in the tapestry of our lives. Can you imagine the smile on our Lord's face when you give your greatest struggle to Him and let Him use it for His glory? Trusting Him is sometimes hard, but I promise He is worth it. He will make whatever is hurting you beautiful some way if we let Him and trust Him to do it. Today I pray you can turn over your hurts, sorrows, and disappointments fully to Him and let Him weave them into your beautiful tapestry for others to see. I bet they see the hardest time in your life as the brightest thread!

Cheers to your beauty!
Tis

2 comments:

  1. You are a gifted writer, you write from the heart. I feel your joy and pain in Faith. You have chosen to make Faith a brightly colored thread in the tapestry of your life. Others might make this brief life a constant thorn, you have chosen the wiser way. I can see such growth in you as you have experienced the joy and pain with Faith. I pray that the Lord will use you to minister to many others, both those who are in a similiar situation and those who just need to see how someone else handles the challenges of life. Know that I continue to lift you in prayer as you learn to live as a family of three on earth and one who is in heaven singing praises at the throne of God. At Christmas Eve mass I was thinking of Faith praising baby Jesus as he was born into this world. Faith was not created to live in this world, but she was created to praise the Lord all the days in heaven, joining the heavenly choir. Her eyes were first created to see the Lord, can you imagine that her first sight was of the Lord in heaven. Wow! How blessed Faith is.

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  2. All I can say is WOW! You have said everything I have been thinking for the past 5 years but never knew how to put into words. Although our story's are different the end results were the same. Thank you for making me see things from you view. You have such a beautiful way with words and really make sense of our situation. I think about you and your family often and will keep you in my prayers! WIth Much Love!

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