William’s Syndrome

IMG_7948If part of grieving is healing through acceptance, than perhaps I’m there. I realized the other day that I have never officially posted a whole article about Williams Syndrome or had a label on my blog for it until recently. Some people, I have become aware of, come to my blog to read about Summit (or Bear as I call him in some posts) and William’s Syndrome and how I’m dealing with life as it is now. I have posted about my struggle with this in the past, but never really have organized my blog to accommodate new readers to my story.

My story is so early and it’s not what my blog is about entirely. Although I think it’s a great idea to have a blog specifically to inform people about WS, I am personally too ignorant to explain it it all so my blog is about ME, living my life with a child with Williams Syndrome and I think you’ll find how surprisingly similar our stories are. So, it’s not about my child, or my husband or the syndrome. It’s about how my life was, and is now. I am still who I am, changed and refined much, but I’m the same person deep inside. I hope this blog ministers to you, it is epic, my story unfolding like a drama before me everyday, never knowing what will happen next. and I want to add… what a JOY. :)

Here are some of my posts during my journey in the order that I wrote them. Be blessed.

***Welcome to Holland*** (not written by me- a very helpful essay written for parent’s coping with a diagnosis)

*Something is wrong with my perfect baby: The Bottom 5%

*Eye problems: 1st Eye Appt.Pictures from this time

*Doctor Appointments:  Off the charts

*Being Positive:  Selling advertising space on Bear’s eye patches (pics)

*Testing for possible Therapy:  Raw & Follow-up Reports (qualified for PT & OT)

*Cardiologist:  Bear’s Tests & Test Results (good)

*Emotions:  Trying to be positiveAngerTears

*Therapy: Bear at Physical Therapy (pics)

*Life:  Coping

*More insurance woes:  Medical Update

*Therapy:  Adding in Speech

*Eye Dr:  pre-surgery appt.InsuranceSurgery Eve & Surgery DayPics

*Therapy:  Update

*Geneticists visit & confirmation of diagnosis:  Appt. Eve &   Appt Day

*Following Posts:  DepressionBittersweetOur Press Release

*Following Posts:  Anger & Dr. Visits

There are plenty more posts written on this topic but I don’t want to link all of them.  This was a painful part of my life and I want to share it but encourage anyone dealing with this that your life isn’t over! My life continued on, with an adjustment. I still post about this from time to time but my life is rich and full. I focus on being the best parent I can be and support others dealing with the pain of a diagnosis. There is always going to be a little huge grieving part in my heart but I’m happy with life and continue to move forward. I’d recommend getting marriage counseling and joining a support group if you are facing this because having a special needs child is often very hard on a marriage. Please feel free to e-mail me if you have any questions or just need to rant! TheBusyNothingsATgmailDOTcom