Our journey, though clueless as to what tomorrow may bring, I choose to embrace today and live it to the fullest. Through this process I have attempted to control all external influences (i.e. people, places and things) that surround Emmalee. I am controlling everything on the the outside of Emmalee because I cannot control her insides (hence the 1p36). I feel so impotent and I find myself constantly fighting off my sadness, frustration and anxiety. Help me Lord!
In addition, I feel my husband sometimes draws away from what we are living by getting involved in other things (i.e. work, graphics and counseling) to distract himself and or to stay focused and sane. On the other hand, Ashley our oldest daughter (now 5) has been very demanding and needy, requesting and desiring constant attention. Who can blame her. I see how easily we forget that she to has been affected by the changes that we are all living. Ashley desires so much to just play, hug and squeeze her little sister. You can see the frustration in her eyes and how her relationship with Emmalee is being castrated and her sharing as a big sister is limited.
I hope & pray for healing in Emmalee's life and that God continues to give me & my husband the wisdom & strength that we need on a day to day basis to be able to walk this new adventure, to surpass the obstacles and conquer the challenges that are before us.
Blessings,
The Contreras Family
Ps. Our deepest desire right now is to connect with other families affected by the 1p36 deletion syndrome in order to establish a support group in Miami.
God is providing and will provide.
ReplyDeletePsalm 89:8 "O Lord God of hosts, who is mighty as you are, O Lord, with your faithfulness all around you?"