A few nights ago I was giving my daughter her nightly bath. I am absorbed in my thoughts as we now have so much more to think about- so many things that we never thought we would have to worry about. She was playing like any other 2 year old, and I’m observing her pour, splash, and laugh her way through the basics of physics. At one point she pours a little out of her cup, then a little more, then looks up triumphantly at me and proclaims, “Mom! The glass is half full!”
I am continually humbled and amazed at all this little girl can teach me. She has made me a mother, a better person, and is preparing me for the rest of our lives together. I’m not so sure me teaching her the ABC’s is doing her justice. For that kind of exchange, she deserves quantum physicsJ In a time when I am so tempted to focus on and prepare for the worst, the Lord used her to remind me to focus on the positive things. This little girl is alive, we are not alone in this journey, and I have this beautiful little girl in my life who is going to be a fantastic big sister. It doesn’t mean I won’t continue to struggle, but there are certain truths that I am holding on to.
We had our MRI Wednesday (which was a very surreal experience in itself) and met with the pediatric neurologist yesterday. They confirmed the ultrasound results, and told us that the condition is indeed severe for her being so early along in development. The “good” news is that we didn’t find anything unexpected. Her brain tissue is being seriously compressed by all the fluid, and he said the best we can hope for right now is that it doesn’t continue to get worse. We will follow the size of her ventricles with ultrasound every 3 weeks. We still have no way of knowing what the outcome will be for her. She will have a shunt after she is born to redirect the fluid, and we will watch her development in the first year. He said this will give us a better idea of what her disabilities might be as we won’t even know right at birth.
My whole life I’ve been a hopeful pessimist. “Hope for the best, but really, expect and prepare for the worst because after all- you never know” is probably how I have approached most situations in life, even those that haven’t happened yet. My husband calls this worrying. I call it being prepared. I saw worrying as a part of the planning process- an attempt to prepare for all that might be. As my fears quickly turned to reality last week, I am realizing that I can do all the “planning” I want, but things are now completely out of my control. I am learning how to take things one day at a time, and continually lean on my faith for support. I had the opportunity to speak to a group of 250 people last night about our recent experience and belief that every child is purposed by God and deserves life. We have already seen how God is using this little life to accomplish His purpose. Addie may think our glass is half full, but I am assured that “my cup runneth over” (Psalm 23:5).
Thank you all for your responses of love, prayer and support. We have been completely overwhelmed with kindness. Please know that you are a blessing to our family.
This was so beautiful Sarah...a reflection of your heart as a mother and a child of God yourself. May God be glorified through your baby girl!! What a testament she is already. xoxo
ReplyDeleteSarah, You should keep all of your posts on this blog for the little ones scrapbook. Addie will later be encouraged with the things that she has taught you and she will realize the struggle you were facing and the way you dealt with it and drew your strength from God. Love you cupcake !
ReplyDeleteAddie is a treasure! And her little sister is so fortunate to have you guys as parents. You are an amazing mom and I couldn't think of a better home for a child who may need special attention. In another home this child may not have a chance - but you guys will give her all of the love and support that she needs. Hugs!
ReplyDeleteHi Sarah, I played the harp for last Thursday's event in Medina, and was very moved by your talk. I felt a special connection to you because my daughter is expecting January 9, 2012, and I had recently received a copy of her ultrasound pictures. Your talk brought tears to my eyes as I imagined what it would be like to hear that kind of news about our new grandbaby, and I hoped that I could somehow receive updates about your journey. Imagine my surprise tonight when a fellow member of Spirit of Hope Prayer Group at St. Joseph Church in Avon Lake asked for prayers for you before I even had a chance to do so! She had heard of your daughter's diagnosis from your friend and coworker, Erin Lyons, who subsequently forwarded your e-mail containing the link to this blog. The e-mail has been forwarded to the 44 members on Spirit of Hope's e-mail list, plus there are 6 members in St. Joseph's Pro-Life Rosary Group who will be praying for you. Thought you'd like to know of the additional 50 people in your prayer web!
ReplyDeletePrayers already sent.
ReplyDelete"Whenever I am afraid, I will trust in You". Psalm 56:3