This week marks Grace's third Family Day! It is so totally hard to believe my sweet and special girl has been home for 3 years already. I remember every detail of the phone call letting us know her adoption was final and we were officially her parents. Because that phone call also came with the devastating news that something was wrong with our daughter. Well, it has been three years since that call, since the range of emotions that go along with news like that, since we traveled to Guatemala (for what turned out to be the last time for a long while), since we started our journey as a family affected by a disability.
Our sweet and special girl has filled our lives with so much JOY. It is hard to describe the joy that she brings to our hearts and to our family. She has also brought such incredible pain, hurt and loneliness to our family. I continue to feel isolated and alone because we have no diagnosis for our daughter. And although others have commented that 'the grass is always greener' meaning that sometimes having a diagnosis doesn't really help at all (for example, we have dear friends whose son is the only child in the WORLD with his specific genetic deletion). I continue to believe that if we had a diagnosis, it would help remove the feeling of isolation that I feel as I walk through the world of special needs with my daughter.
But on this journey, I am forever thankful that we are a family of faith and that we call Jesus our Lord and Savior. And that our hope is in the cross. We continually believe our daughter will be healed but we also rest in the knowledge that someday (maybe not this side of heaven but someday) we will hear her voice. Someday, we will see her act 'normally' and someday we will have a conversation with our daughter and someday she will call me mom (Oh, how I long to hear her voice say my name). It may be difficult for me somedays but, I believe and trust that God has our family right where He wants us.
So on this anniversary week, I continue to stand on what has become an anchor verse for our family,
"For I know the plans I have for you," declares the LORD,
"plans to prosper you and not to harm you, plans to give you hope and a future."
Jeremiah 29:11
And I thank God once again that He looked at me and saw me as able to handle the life that we will lead with Grace (because goodness knows I don't see that in me at ALL). And I thank God for the blessings of older brothers, who love Grace without boundary and teach this mama something about unconditional love daily.
5 comments:
a beautiful post from your heart. yes, I can see how having a diagnosis could help you locate others with whom to connect. and we do learn so much from our children, don't we. (You must have gotten your daughter home before she was a year old? how wonderful. my daughter came home on her first birthday). happy family day.
Anne,
I think about you guys lots. We have some dear friends who learned recently that their daughter has Rett syndrome. She talks about the isolation of having a daughter that has so many needs and few people that can connect with her on that very personal day to day struggle.
Grace is beautiful. What a difference 3 years makes for all of you! I hope that the next three years are filled with many more blessings.
Such a beautiful post, Anne. I love Grace's sweet, little face in the last picture. You are an amazing woman, and I think of you and your family often, and am so glad I got to meet you.
Happy Anniversary. This was such a beautiful post. Grace is a true gift from the Lord to your family. Sometimes he gives us what we never even knew was missing :)
Hi Anne,
I can relate to the loneliness of having no diagnosis for your daughter. At least with a diagnosis you know where you stand, whether it is so rare or not so rare. There is also a few places to go for rare deletions in hopes of finding another with that deletion. My daughter is 14 years old and we have lived with this Undiagnosed Phantom over our head for the whole 14 years. You might find some helpful information at www.undiagnosed-usa.org . There is a link to an e-support group, lots of families going through similar situations.
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