Almost 18 months ago, our little Sonzee bear opened our world to all things CDKL5. While approximately 90% of our exposure has been dreary, depressing, heart and gut wrenching, stressful, scary, and undesirable, there have been times along the way (10%ish) that have brought such extreme positive emotions that they are difficult to express. Others who are on a parallel journey to ours with CDKL5 or another medical challenge might agree with me.
As you embark on this new life in a direction that was completely unexpected from anything you could have ever fathomed, the outside world starts to close in around you. I hope that you have fantastic support from friends and family, but to be honest, there is no way they can truly understand your position. They can offer you an ear to listen, a hug when you need it, and words of encouragement, but nothing replaces the support and camaraderie you find in the parents that are journeying right along with you.
Sam and I have both formed many online relationships with the parents we have "met" in our online CDKL5 support group. We have both been lucky enough to meet different moms and dads over the past year and a half. Similar to being a mom in general and having friends who are mom's "who get it", I cannot imagine being on this journey without having at least one other parent who truly understands what it is like to be in our situation. Of course just like parenting in general, there are variations to each child's story, but to have others who have been faced with having to make similar decisions, makes the impossible bearable.
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