it will be OK

At 10:30am this morning i heard the sound of a new email.  I started to read it and was immediately brought back to the day when our Lucia was diagnosed with PKS.   The email was from a pregnant mom who had just found out her unborn child has Pallister-Killian Syndrome.  The doctors have told her and her husband that PKS is a very severe syndrome and they should consider the option of terminating the pregnancy.   She writes that they are in shock and confused...she asks if our daughter is alive? Is she getting better?  She wants to know more about the syndrome...  I am crying as the hardest day for me was the day our Lu was diagnosed.  I am brought back to that moment.  The moment where the genetics staff tells you how they predict your child will be.  I recall the words we were presented as we held our tiny 10 day old daughter in our arms, tears streaming down our faces onto hers as each new punch is cut.  Holding her tighter but more gently as every minute goes by.  Shortened life span, unable to talk, unable to walk, seizures, scoliosis, feeding difficulties, hearing and vision loss, physically and mentally disabled,  hospitalization, blah blah bluck.  But PKS is a mosaic so there is a possibility that she may be different than most..  A mosaic syndrome meaning not all cells are affected...

The mom and I write back and forth throughout the day...I want to share so much with this mom.  I am the only person she has reached out to at this point.  I want to jump on a plane with my bird and show her how wonderful our lives are with our beautiful daughter.  We held our angel in our arms, whom we were so deeply in love with, as we were given a nightmare of a diagnosis.  These parents are only able to hold the mothers belly and hear the words, the stupid, labeled, very dark words.

Jason came home from work and we talked about the back and forth emails.  I talked about wanting to share more and how I hoped she would call me tomorrow.  The mom had also included Jason in the first email and he wanted to write back.  Here is what he wrote:

I remember laying in bed with Juliet night after night crying about our new lives.  However, since then, our lives have become much fuller, more beautiful, and complete because of our Lucia.  While I wish she could do all of the things we see other kids do, I lover her for exactly who she is.  Having a special needs kid will bring life to your family, will teach friends and family what life is truly about, and he/she will give you strength as he/she will be a walking testament to toughness.  You will be introduced to hundreds (maybe thousands) of people you may not otherwise have met.  There will undoubtedly be hard days, sad days, and scary days, but there will be twice the number of perfect days.  He/she will make your marriage stronger and bring friends and family together like you never thought possible.  You will learn and understand compassion for others in a different and more meaningful way.  You will learn to spot someone in need or a person that just needs a pat on the back.  You won't be afraid or embarrassed to help out.  No doubt the next several months will be scary but you'll be OK.  Don't be scared to cry, reach out to friends, doctors, or you PKS family.  In so many ways, Lucia gives more to us than we will ever be able to give her.  Life is not always easy but would I trade my situation for another? No way!!  We send all of our love and look forward to speaking with you.
Jason

and that is exactly what I wanted to say, perfectly said in an instant by my husband.  We send our love, hope and prayers to this whole family during this time.  And if you know anyone going through the same, please pass this little note Jason wrote along.  I actually want to send it to our genetics clinic and obgyn so they too may pass it along to parents experiencing something similar...

Many perfect days.  love you jason, love you lucia and love you little scout