"If I did not simply suffer from one moment to another, it would be impossible for me to be patient; but I look only at the present moment, forget the past; and I take good care not to forestall the future. When we yield to discouragement or despair, it is usually because we give too much thought to the past and to the future." St. Therese
This photo was taken two weeks after my daughter was born. The Neonatologist at St. Vincent's found a murmur shortly after her delivery. They recommended that we go to a cardiologist "just to be safe." Initially, they put her on heart medication but after just a week I knew something was really wrong. I called back the Doctor's office a couple of times and they told me just to wait until my next schedule appointment. The last 24 hours before her appointment I didn't sleep. I was afraid I would wake up with a non-responsive baby. If my mom (who is a NICU nurse) would not have been there I would have gone to the ER. It was that bad. When we got to the Doctor's office the Cardiologist said: "I've got some good news, and I've got some bad news. The good news is we know what is wrong. The bad news is you have to go to the hospital RIGHT NOW." My daughter was diagnosed with a rare heart disorder called Shones Syndrome. To say I was in shock is an understatement. This is the kind of stuff that happens to other people. Why me? God had an incredible plan for my life. I had a catalyst conversion experience praying by her bedside. I knew my daughter was special and I knew that she would change other's lives as much as she changed mine. Little did I know. Two years later on her second birthday my daughter was diagnosed with Autism. My journey with my daughter had just begun. In her short 8 years of life I have witnessed miracle after miracle. One of my favorite Scriptures in the Bible is John 9:3.
"As he passed by he saw a man blind from birth. His disciples asked him, "Rabbi, who sinned, this man or his parents, that he was born blind?" Jesus answered, "Neither he nor his parents sinned; it is so that the works of God might be made visible through him."
This verse is powerful! We have been entrusted with children that God is going to be made visible through them! Wow! Next time you feel worn out, tired or stressed remember this precious gift. The world will tell you your child is a burden. We know what a blessing this is. Be conscious of this witness. Willow has taught me to live in the present and not to take anything for granted. I do not worry for what the future may bring because we are trying to help her RIGHT NOW. I know God will provide and the 401K plan can wait (Luke 12: 16-21).
Toady's Prayer: Lord, let your works be visible through my child. Help me to witness to others about the sanctity and dignity of life.
2 comments:
Hi again,
I hope you don't mind me asking you about Willow. We are working with a neurologist and a geneticist to see if we can find a diagnosis for Emily. It's not really critical at this point because we will still treat her the same way, etc., but some agencies have said that if she has "their" diagnosis, then funding might be available.
ANYWAY, I don't know all that you have done with Willow. I didn't know she had heart problems at birth until your recent blog entry. I just wonder if you have ever had her tested for Williams Syndrome? Seems like Shones can be part of that. Emily seems to meet a lot of that criteria, but she's never had heart issues. They are also seeing if she has Angelman Syndrome...
Here's a few links if you've never heard of it. Again, tell me to buzz off if I'm being too nosey!!
http://www.achd-library.com/consensus/sec5.html Link mentions Shones/Williams
Williams Syndrome Association
http://www.williams-syndrome.org/what-is-williams-syndrome
Williams info on FB from wikipedia (probably not the best source)
http://www.facebook.com/pages/Williams-Beuren-Syndrom/105467856154144?ref=ts
Take care, and blessings!
No, you aren't being nosy! When she was diagnosed with her heart problems they did genetic testing. Truly, I do not know how extensive it was they just told me she was fine:-( Obviously this was before knowing about the "Autism Gene." So don't know if she had it. I will look up Williams. Thank you...
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