1st Grade

1st Grade.

It's a funny feeling to be on the eve of yet another first day of school for Ellie.  She's been so excited about school starting back, and honestly I have too.  The surreal feeling is that again, I have complete peace.  Her teachers are incredible, and I mean absolutely incredible.  It's crazy to say that after only talking with them for 2 hours, but I just know it's true.

I know this year the demands and rigor will increase, but if there's one thing I've learned along this crazy ride it's that we will make it through.  Life throws all kinds of curve balls.  Things change.  We adapt.  We re-group.  We move onward.  And we will make it. 

Anxiety has definitely increased in Ellie.  Repetitive, rhetorical questions are frequent.  She has been more food focused lately.  All of which makes me fearful.  Living with PWS often feels like you're waiting...

Waiting for the school to call.
Waiting for an epic meltdown to occur.
Waiting for a therapy to not go well.
Waiting for a friend to be mean or unkind.
Waiting for food to be stolen.
Waiting for behavior to change.
Waiting for the "elephant in the room" to come bursting into our life unannounced...the hunger.

There is perspective gained as Ellie grows older.  And daily I have to choose not to let all these fearful "what ifs" and "whens" consume my thoughts, and dictate my life.  I remember David saying early on, "We'll be ok and we'll get through whatever comes our way."  I kinda laughed, thinking how could he be so sure?!  But as every week and month pass I see more of what he means.  Every day it's a choice to live this way, and some days I literally have to verbally tell these fears and feelings to get the heck away from me.

I truly believe that Ellie was born for an amazingly great, and bigger purpose than I can wrap my head around sometimes.  She's in a unique position to impact others and change this world.  So is her brother.  Every time I see Mac interact with her, I just know it.  So, as they take on 1st grade and 2K my hope is that they will see the confidence that their parents have to help them through whatever this life throws our way.  My hope is that they'll adapt, overcome, and not live in fear.  Here's to another great year of growth, perseverance, and gratitude.

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

Feed Me

Lately I've been broken.

Like major mad at the world, cry randomly, not taking care of myself, shutting down, mom guilt...broken.

I haven't wanted to talk about it with hardly anyone.  And those who I do talk about it with, I'm short and sweet...you know how it goes, "life is crazy, but everything's fine."  Well, it's not.  Life has been hard lately, and if I'm honest...it's been hard for the last almost two years.

Mac entered this world ticked off and loud.  And he cried all.the.time...and still does.  He cried when he was hungry.  He cried when he needed his diaper changed.  He cried when he was just mad.  And he cried all the time with gas and because his stomach seemed to hurt him.  Who knew babies and kids cried like this?!  Oh, that's right...not us.

You see, our first child was the exact opposite.  Ellie literally entered the world like a small squeaky kitten.  She never.ever.cried.hardly.  She never woke to be fed.  She never cried when she needed a diaper changed.  She never cried just because she was mad.  And she never cried because something seemed to hurt.

Two extremely different experiences.  Thinking back to before I had Mac, I remember telling myself to be flexible and laid back, and at times now I wonder if I was a little too laid back.  I don't think you realize the stress on yourself until you reflect back.  I was stressed, and that stress just continued.

Mac and I struggled to nurse.  Nursing is hard...enter mom guilt.  Eventually I decided I would pump because I knew without a doubt I could do that.  So I pumped.  Mac started throwing up.  And almost two years later still continues to struggle with throwing up.  I frantically stopped nursing and went out and got the hypoallergenic formula because I was convinced it was a milk protein allergy.  We struggled still, but it got a little better.

We didn't sleep.  We don't sleep.  He hates sleep.  We got reflux medicine.  Things got a little better.  We still didn't sleep.  He hates sleep.  Sleep training didn't work.  Crying it out didn't work.  Eventually we were in a place where almost every time we put him sleep, he got so mad that he he threw up.

He slowly started to stop eating different foods, and became so, so picky.  Like crazy picky.  He barely wanted to eat. All he wanted to drink was milk...all the time.

We had talked with our doctor about constipation and his weird poop, but he was going everyday, so we put it out of our minds really.  Amazing how when you become a parent that so much conversation centers around poop...

Meanwhile, my mind went everywhere.  When you have a child with a rare genetic condition, and your eyes are opened to the medical world, your mind can't help but go there.  I became nervous, scared, mad.  Looking back...mom's intuition is a force to be reckoned with, and as crazy as I felt, I'm glad I continued to wonder.

Enter January this year...

Almost every Friday in January I took Mac to the pediatrician because he was throwing up.  Initially, we were all convinced it was the stomach virus (and still very well could've been), but it kept happening...and I knew something wasn't right.  We decided to get an abdominal X-ray and a referral to a gastroenterology specialist.  The X-ray determined he was extremely constipated...enter even more mom guilt.  And upon pushing to see the gastro doctor sooner, severely constipated.

I felt a terrible feeling that I hadn't experienced since Ellie was diagnosed with PWS.  How could I have not known this?  How could I let him be so miserable for so long?  I still get trapped in those thoughts frequently, but have to remind myself that I cannot dwell on the past.  The past is gone, and we've figured out some of the problem.  We can only move forward.

He's happier now, he's eating more quantity and a little more variety, he's sleeping a little better.  But ultimately, he's happier now.  But here's what I think I'm struggling with...

Tomorrow we go to have an evaluation for feeding therapy.  There, I said it...feeding therapy.  Again, therapy for feeding.  And while I know we're in the the absolute best hands, and it will do nothing but benefit him...it shatters a piece of me all over again.  More therapy, different child.  Totally unexpected.  This wasn't supposed to happen again.  But it is.  And just acknowledging it, makes me feel better.

So, tomorrow as we tackle this new feat...I'm choosing to find joy and give God the glory - thanking Him that our sweet boy is feeling so much better and so much happier.

And this picture that once made me again feel sick, nervous and sad (namely because feeding my child was a struggle all over again), now makes me feel optimistic and hopeful.