The roller coaster ride of emotions and ups and downs is beginning full force again. Tomorrow is Lilly's pre-op Heart cath. They will determine if the Fontan is ok for her or if things do not look good determine if a heart transplant may be in her future. We have only had to go to 6 month check ups and it has been a long time now (over a year and 5 months) since any surg. We WERE happily less stressed. It is time though for the next step! Ugh did time fly! Since her last Surgeries she is walking, running, talking, singing, and just a little ball of love and energy! We are so grateful for the gift of life she has been given already. This past weekend my husband's younger brother got married to a wonderful and beautiful lady who we adore. We got to travel out of town overnight with Lilly and the other 4 of our children. This was our first mini vacation in over 2 years! We were thrilled to watch Lilly take over the dance floor. She ran around and danced and was smiling from ear to ear. She was telling everyone HI and trying to drag people onto the dance floor. I was so proud of her, of us, of our family in that moment. Most of the guest did not know about who she was and what she has been through, all they saw was a loving little girl having a great time. Her brothers and sister watched her and danced with her and chased her :) They all were loving life. To go from a place of worry and fear to a peaceful acceptance and to overcome so much.... it just is so very moving to me.
This past easter season I have done alot of thinking about God giving his only son.... to save us....the sinners... the ungrateful. I have to say I am thankful for his sacrifice... but I could never do it (yes, I am only human) even with all the problems LIlly has had I could not let go of her for anyone else. My instinct is to fight and never stop fighting with her. I will never give up on her. I will not give her up. I am selfish. I would not do it for the greater good. I love her too much. I would trade her places any day. I would gladly give up my life in place of hers. I would do anything to take away the pain her little body endures. It is a wonder and gift that God has given us, that Jesus died for our sins. I know He knows the pain of losing a Son. I know He is with me. I know He understands our fight because He gave everything to save us. I believe He has plans for my daughter. I know He does. I know He is with her and loves her. I know He is on our side. I believe that I must relinquish control and all worry over to Him. I will do my best.... and I know He will do the rest. Please send some prayers our way: pray that Lilly's heart cath goes well and they find only good things... pray that mommy and daddy are able to stay strong and keep faith in the Lord... pray that the doctors are guided to do what is best for Lilly, pray that she feels little or no pain and continues to be the little fighter we know she is. Pray for all the little children and their families who are going through similar things. Pray that they find a cure or develop ways to help them. Thanks for joining us on our journey. <3
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