So I have found a pretty good booklet of information on 22q from an Australian organization that deals specifically with this: http://www.vcfsfa.org.au/media/documents/vcfs%20parents%20guide.pdf
I guess down in Australia when a person has this there is a wonderful government support system. After reading this though, it is starting to sink in that our little flower is going to probably have a very very rough first 5-6 years of life physically and then have to deal with the mental issues that come with this awful thing for the rest of her life.
After the highs of Thursday evening, the lows of yesterday feel so low. What I try to keep remembering is that her accomplishments will be so sweeter because of what she/we have to overcome. I am just hopeful that despite all of the health issues our little one has the opportunities to accomplish whatever she wants to for the rest of her life. From everything that I have read we are going to need to see a number of physical and mental therapists, speech and learning teachers and lots of doctors. When looked at in total it is a phenomenally daunting task that is depressing - so we have to keep remembering to look at things individually. When faced with a tidal wave how do you worry about your shoes getting wet?
One day at a time-and since we cannot control the future-worrying about it is senseless. God has the power to change the direction, and with all of the prayers, that has been happening all week. Have faith that with Him all things are possible, and recite the serenity prayer. It does help. We are all presented with challenges -and I have a mantra that I learned back a while ago when going through a particularly difficult time- "It is not what happens to us, but how we handle it". I have found great strength in that and the serenity prayer and God- and knowing that many before and many after will have worse to deal with. This I know you have seen firsthand in the last week. I know I am not there, but I am with you as surely as if I were, and pray for your strength and acceptance, and peace. Your family is going to be fine. You have an incredible support of love to uphold you. XXXXOOOOOXXXXXOOO
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