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.

Bear Hugs

Mac ran over to Ellie tonight, his arms open wide for a hug.  And when they reached one another the biggest bear hug ensued.  Both of them feeling all the feels of what it is to be loved and appreciated.  Ellie looked at me and said, "Awww, Mackie Moo just loves me doesn't he???"

It's so crazy how this whole interaction will melt me into a complete puddle of sappy mush, yet make me fight back tears at the same time.

Why all the emotional extremes?

I think it opens old wounds.  
She might never...
Be prepared if she doesn't ever...
Socially, it will be hard...

It also thrusts present worry in my face.  

Friendship. 

Family better love you no matter what, but oh, aren't friendships so hard.  I want both my children to have friends...meaningful, genuine, lifetime friends.  And because PWS entered our life, friendship is just harder.  Plain and simple.

I can remember in the first days after receiving Ellie's diagnosis, David and I had a million thoughts run through our heads.  I can remember just crying at the drop of a hat, thinking about the "what ifs."  I can also, remember David looking at me, with tears in his eyes, "Do you think she will make friends?"  We just held each other.  "Yes, I said.  I know she will."  It is such a raw, sinking feeling when doctors give you a diagnosis.  It is like everything is taken away from you, and things you never dreamed you would be worried about, creep to the surface.  Will my child make friends?  Will she relate to others?  Will she thrive socially?  Will she be accepted?

I still know the answer is yes, she will make and have friends.  But, I have a bit more perspective as Ellie grows older.  Is it harder for her to make friends?  Yep.  Communication has been her first hurdle.  Simply being understood and heard is one of the first ways you make friends.  One thing I've learned along this journey...parents, teach your kids that we are all unique...differences make us amazing.  I know it feels safe to find similarities, but if you open yourself up to differences...you might just change your world for the better.  Being kind is definitely the new cool, but being kind AND being a friend is even cooler.  Sometimes just being kind isn't enough.  

Ellie's other hurdle making friends has been the ability to relate to peers, interact on their level, and just "keep up."  Six year olds like to run around, do cartwheels, play tag, and talk about JoJo Siwa once before moving on to the next topic.  Ellie would long to talk with you about every detail of JoJo's life.  She's not a fan of running, can't do a cartwheel, and might play tag for 5 seconds.  We've worked very hard to learn to initiate conversations and play with peers.  We do alot of role play at home about how to talk with other peers.  What could she say... What could she ask them... Ellie, without a doubt has always had a social aspect about her, and longs to be social with others...it just takes her a little more time to process information, and get it back out to her peers.  Each day I see her picking up more things socially.  Like everyone though too, she also can reach her max and needs and has to have alone or down time.  With each day that passes, I am in the unique position to really see what an awesome personality she has.  She has the greatest sense of humor, and is so funny, like seriously funny.  My prayer for her continues to be that she would have friends placed in her life that truly embrace and love her for her.  I pray that she would be able to garner friends that would be patient with her, look out for and fight for her, and build her up...and that she would do the same for them.  I also pray daily that she would be kind to everyone, but especially be kind, and a friend to those who need it most.

Back to the emotional extremes of Mac and Ellie's interactions....

Ultimately, their relationship shows me that love conquers fear, and even when you're told something might he hard...it's all the more sweeter and beautiful when you witness it happen right before your very eyes.  The connection Mac and Ellie are forming is the most amazing thing...and it absolutely will aid them both along their friendship journeys.

Friends...Ellie will most definitely make them...and Mac will too.  So thankful that they have one another for this crazy and beautiful ride. 

I have a new saying this month, "May is Cray."  Because it is.  Like seriously cray.

I thought I was ready for it and then - boom - it got me.  And...it's PWS Awareness month.  The month that I intentionally fill your need feed with facts, thoughts and writing about our journey.  And life snuck up, and I haven't been posting or writing because of all the cray.  But it dawned on me...what a beautiful depiction of life with rare disease, and heck, parenting in general.  Things happen, curveballs are thrown...you regroup, revisit, and recharge.

So, I'm recharged and ready to revisit PWS awareness.

Our organization, FPWR, has put together incredible daily facts for families to disseminate.  And this one I felt was so important and so timely due to me feeling so crazy this month.  I took this survey, so I'm one of the 142.  And yes, PWS impacts many, I would argue, every aspect of our life in some way.  Sometimes it's subtle...what am I going to pack Ellie for lunch and snack every.single.day?  And sometimes it's in your face...as I watch my 6 year old try keep up with her peers running and playing, or as I hear her try to have a conversation with a peer about something, anything...and that peer walks away or looks at her confused because they can't hear her or understand her.  So, yes...there is burden.

But there is so much more.  I long for and pray for a day that the challenges of PWS be lifted from Ellie and all the other families who have loved ones with PWS.  But would I change our life?  Absolutely not.  Our life is exactly as it was intended and orchestrated to be.  It's hard, it's messy, it's complicated, and it's cray.  But isn't everyone's to some extent?  It's finding the beauty in all that cray that makes it so much more.  It's hearing Mac say, "We lud you Eddie" as we pull up to Ellie's school.  It's watching David chase the kids to their room, and all I hear is giggles and squeals.  It's seeing Ellie walk to the car at pick up and yell, "Bye Sawyer!"  And he yell back, "Bye Ellie Belle!"  And it's hearing Ellie say, "My friends had doughnuts and juice at our party today, and I had water and a Kind bar" and that's totally ok with her.

So it's so important to recognize that we as caregivers, need support and we're crucial when examining and looking at treatment options and avenues for our kiddos.  But it's also so important we make time for self care, and stop and find the beauty in all our cray...especially in the month of May