A letter of thanks

To the parents that just received a diagnosis that rocked you to your core and took you to your knees...I see you, I hurt with you, and I want you to know it will be ok. 

To the new mom who is struggling with post partum or PTSD...do not brush it aside and try to fight it alone.  Talk to someone...anyone... and with the support of others, choose the help that best fits your needs.  

To the husband who is trying to comfort a grieving wife and mom …you are doing an amazing job.  Just hold her tight and do not let her go. 

To the wife who is trying to comfort a grieving husband and dad...you are doing an amazing job.  Just hold him tight and do not let him go.

To the doctor that decided to run the genetic testing...I was so stinking mad at you initially, but I learned that you had my child's best interest at heart and gave her the best opportunity at living her best life through early intervention...so thank you.  I am truly grateful for you.

To the confused grandparents waiting anxiously to comfort your son or daughter and meet your grandchild...I see your pain, and want you to know that just being there means the world.  You do not have to say anything. 

To the other family members trying to make sense of this, thank you for giving us space to figure it out and thank you for just listening.

To the pediatrician that gets our life...the blessing you are is only from above.

To the friends that feel helpless when crisis hits...thank you for calling, texting, and just listening.  And thank you for agreeing life sucks right now. Please, do not stop checking in.

To the NICU baby in bed 18 who was rolled back to surgery...I prayed so hard for you and your family.

To the church family and friends that brought meals and cared for the other precious kiddos...you are a treasured gem. 

To the adoptive family, your forever home brings me to tears in the most beautiful way.

To the family that still has no diagnosis...you know your child better than anyone.  You are going to want to give up...don't.

To the NICU nurse that rocked my baby girl all night and took care of her like your own...I will never be able to repay you.

To the single mom or single dad who is utterly exhausted and overwhelmed…you are doing a damn good job, and you make every single one of us proud to know you and call you a friend.

To the sibling(s)…you have been given an extraordinary gift.  It will not always be easy, and sometimes it could be down right hard...but I promise you this; it will be beautiful, and you will be better by having one another in this life. 

To the family walking into the children's hospital to visit a "Specialist" that you have been told is just one of many to come...I smiled at you and said "hi" in hopes that you would know you are not alone.   

To our Father who has known our journey long before we ever did, and has loved and will love us through it all...I trust you, I love you, and I pray your will be done. 

To the endocrinologist who has committed her life to my child's rare genetic disorder, you are proof that angels really do exist.

To the yearly donors giving funds to support research for my daughter's rare genetic disorder...I will never be able to put into words my thanks.  The hope you give our family is indescribable.

To the teachers and educators that will teach my child…we are on the same team,  and I hope you can sense that I respect and trust you.  Let's work together to meet my child where she is, capitalize on her strengths and refine and work on her weaknesses.  Let’s just always agree to talk about her strengths first, ok?

To the therapists that work with my child weekly, we've become family.  I might not always seem happy or nice, but I'm so utterly grateful for you.

To the individuals with PWS and families who have selflessly and courageously agreed to participate in clinical trials in hopes of finding treatment(s) for PWS.  YOU are trailblazers and world changers.  You’re participating in something so much bigger than yourselves.  And the trial and medication might not work, but then again it just MIGHT.

To the individuals that might consider being mean or bullying my kid...one word for you - DON'T.

To the individuals that accept my child for who she is, and become her friend - quirks and all...words cannot adequately describe my love for you.   

To all the families of special needs we've met and will continue to meet along our journey...I never thought I wanted to meet you, but I'm so deeply glad we did and simply cannot imagine life without you.

To my child...gosh, I love you so much.