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Life with a boy and his Hypoplastic Left heart Syndrome, now Heart transplant and partial Liver from Aspergillius. Also, a girl and her Tethered Spinal Cord Syndrome, Neuro Endocrine Cell Hypoplasia, Lumbar Hemangioma, asymmetrical gluteal cleft, Pectus Carinatum and two Super Sisters and one yummy baby brother.

Saturday, May 3, 2014

Soaking it in

Sometimes I feel extremely guilty for not getting the million and one things done that I could potentially get done during a nap. But, there are not very many naps to be had and I am soaking it in while I can. 
She slept for many glorious hours. I loved every minute of it.. 

There are truly angels on earth. Most of them I believe, are part of my life. We have been showered by loving gestures. 
Another example: Recently we recieved a beautiful card in a sweet handmade envelope. The money was enough to cover all the new meds Gator just started. It is amazing to me how things have worked out. 

I wish everyone could feel this kind of love. I have a plan to pay it forward. It is going to take a whole lifetime to do so, but I am going to... 


1 comment:

Emily G said...

I am so sorry you guys are going through so much! It just is not fair. You are a tough lady, take it easy, and enjoy soaking in these moments.