Frankie just turned 19 months.
Some of the best advice was given to me by my Dad. He told me, “never gift unwarranted advice.”
It starts when you are pregnant. Like really showing.
“Oh! Congratulations! Is it a boy or a girl?” Oh thank you. We are having a girl.
“Wow you are going to have your hands full.” “Make sure to breast feed for sure. Also get this… do this… oh don’t get that… stay away from this… definitely want this… eat this…”
Now I am not writing this to sound like a nag in any way. I got some very valuable advice along the way. Usually when I asked for it. Some when I didn’t.
But let’s just put it out there. NO OTHER KID IS YOUR KID. What works for someone doesn’t work for your kid. Especially in the world of PKU. We are on a very different axis right now. Our world might be a little bit more tilted in some ways and maybe a little bit more balanced in others.
My daughter just took her first three steps. I burst into tears of joy and ran in to tell my resting husband. He had just had shoulder surgery and was in bed. He was overjoyed and we were so excited for her achievement.
We have gone through so much pain the last few months of listening to people say, over and over again, “She’s not walking yet?!” Loudly, upset sometimes, sadly, joking, the list goes on and on.” Then poured in the advice, “Do this, try this, do that.”
It has been unbelievable. We’ve watched on Facebook feed friends with babies that started walking at 10 months on. Some nights I would cry watching other friends of mine over joyed at their child walking or running around they’re living room 7 months younger than my daughter. Mike would say, “Don’t watch it if you are going to get upset.”
But the truth was I was getting upset. Because people were becoming a little aggressive about it. Thrusting their opinions as to why Frankie wouldn’t walk. One friend of mine said its because Frankie gets blood tests done from her feet. So maybe her feet hurt to walk on. That’s a moment where I lost it at home. Couldn’t stop crying. Then I realized that Frankie stands up all the time so that couldn’t be why she wasn’t walking.
It’s shocking the way some people will behave around your daughter. We decided to block it all out like WHITE NOISE. We listened to ourselves and our pediatrician who said, “She will walk when she is ready.” When people started to comment, we would just smile and nod.
Then the other night Frankie looked at me and took three steps toward me with a huge smile on her face.
It was absolute perfection. All these months washed away of other peoples opinions and I couldn’t be a prouder Mother of my daughter. She has been through so much and has the biggest smile on her face every single day. And this last week she decided it was time to start walking.
Frankie my darling girl… I am so looking forward to walking by your side through this crazy journey called life. Don’t listen to what anyone else says. We love you and are with you always. Someone at some point will tell you that you can’t have what you want in life.
Well Frankie, you can. You can have anything you want in life. You just have to have the courage to fight for it. Until that day. We will fight for you.
Life can sometimes knock you off your feet.
My husband just got shoulder surgery. It was a very serious procedure and he won’t be able to lift our daughter for at least three months.
Our daughter is nineteen months old right now and you would think she would jump all over Daddy no matter what. But it is amazing how incredibly intuitive children can be. The second she saw Daddy in his sling she knew something was wrong.
It’s been a week and she has not once try to wrestle Daddy. Instead she will just come up to him and cheerily say, “Hi Da!”
At the end of the day we will sit her on his lap and she will quietly watch “Peppa Pig” without moving around. She knows that Daddy is hurt.
I learn more and more about my daughter each and every day. After this week I’ve realized how incredibly aware she is about what is happening around her and how Momma and Daddy are speaking with one another and handling life.
As a family we have to encourage one another on a daily basis. I think thats one of the core qualities to our marriage. We know that anything is possible and that we need to encourage and lean on each other through thick and thin.
So for the next few months it’s just me running everything. It’s exhausting but it’s going to be an incredible learning experience for us as a family.
“God doesn’t give us anything we can’t handle” so …. here we go…
I’ve been squeezing my daughter a little tighter this past week in light of the recent events in the world. I look at her bright eyes that shine on me with total trust and I think how will you see the world as you grow older my darling girl.
My sweet girl at four days old was diagnosed with PKU. I know I should be writing more but sometimes I sit down to start a blog and I start to tear up searching for the words. Sometimes there just aren’t words to express my feelings.
I am thankful. I am thankful that my daughter will live a long life. I do often ask God why he chose her to have this life long disease. I look for an answer. The only answer I know to be true is that, “God doesn’t give us anything we can’t handle.”
And this is true. Through these almost nineteen months we have some very difficult days with PKU. This past week we had to give Frankie her blood test. As she is getting older she is very aware of what is happening and this week it was just awful. She cried so hard she threw up. Both my husband and I cried. We didn’t let her see but we cried. We thought what eighteen month old should go through this.
Yesterday was the first time in the last two months she let me play “This little Piggy” on her small toes while reading her book. Because when i reach for her foot I was met with fear. She thought that Mommy was going to do a blood test and I was going to hurt her.
No child should ever think that her Mommy was going to hurt her. But I just hold her after her blood test and her Daddy holds her and we tell her we love her and that we are doing this to keep her healthy and strong.
She’s not old enough to understand that yet and it just breaks my heart. For those of you who have PKU out there and the parents of children my goodness, you are so strong.
I’ve been writing this book series for Frankie because it’s been so therapeutic for me. Through good days and bad I find that when a draw something or write something I know each page will make my daughter smile.
So tonight… I wish I may… I wish I might… I wish that there would be a cure for PKU. If there never is one, I pray that these books I keep sending out to the universe find a happy home and put a smile on some persons face that might be having a tough day. Because we all need more smiles in this world.
Trying my best…
Hi everyone, Halloween is here and with it comes our very first Holiday Book in our Frankie PKU Friendly Book Series. “FRANKIE’S HALLOWEEN A PKU FRIENDLY HOLIDAY”
I have to say writing these books have been incredibly therapeutic for me as a parent to Frankie. We’ve had many struggles since her diagnosis and this has been the most incredible journey for our family. We love our daughter Frankie so much and creating these books has been so rewarding to our family. We’ve had so much love poured into our family and support since starting the journey I just hope that you will find as much joy in these books as we have. Please join us and support our efforts to spread PKU awareness around the world for our wonderful darling girl Frankie. Also in this book it features a wonderful low protein PUMPKIN SOUP RECIPE from award winning chef Tony Spatafora from Dish IT OUT. It is so good I recommend serving this all through the holiday season.
Love to you all and HAPPY HALLOWEEN!!!!!!!!!!
Our books are available at the http://www.blurb.com bookstore.
Also please follow us on Facebook. Our page is called “Frankie’s PKU Friendly Books” We will keep you updated on all future releases!
Hi Everyone! I am delighted to announce the release of my new book “Frankie’s London A PKU Friendly Adventure”. This book is available to download for any device at my bookstore at http://www.Blurb.com. Frankie’s London is also available at the Apple Ibooks store. Here is a sample of a couple of illustrations from this wonderful adventure. Join us on our efforts to support the PKU community in spreading awareness. Frankie is just about to turn 18 months old and I couldn’t be prouder of her.
Best wishes to you all this week. A lot has been happening in our household the last few months. So I am back at full speed. First I wanted to tell you all about our newest edition to Frankie’s PKU book series.
This is an amazing book for anyone who wants to learn about fruit and vegetables with their kids. It’s especially helpful for Vegan and Vegetarian families trying to count protein in their diet.
Our doctor told us to help Frankie learn about protein in food as young as we can, so I read this to her all the time now. I hope you all can download the E-BOOK or buy the softcover copy or hardcover. Give it to a friend. Leave it at a doctor’s office waiting room!
Spread awareness for the PKU community. We would all appreciate it more than you know!
In other exciting news we will also be releasing “Frankie’s London A PKU Friendly Adventure” this month!
“Frankie’s Malibu A PKU Friendly Adventure” “A-Z with Frankie A PKU Friendly Learning Book” and “Frankie’s London A PKU Friendly Adventure” (available this June 2017) are all available in the Blurb.Com bookstore. Hooray.
Here is the link below.
These books have been an amazing journey for our family to write for Frankie and we hope you can join us on this adventure.
Be strong in the fight for PKU awareness!!!!
Spread joy wherever you go!
And eat your Fruits and Vegetables. Your body will thank you for it!
Much Love To You Always-
Okay, this morning I put Frankie in her ExerSaucer and went back into our bedroom. I’m not going to lie to you, in the morning I buy another 15-20 minutes of sleep by putting on Mickey Mouse Club and letting her play. Being a parent is exhausting and sleep is precious any way we can get it.
Well this morning I put her in, went into the bedroom. Snuggled up in bed, went to check my phone, then the door opens and my daughter crawls in and says “hi!!!!!!!!”
I mean the proudest and loudest “Hi!!!!!!!!!!” you have ever heard a baby say. My jaw dropped. I couldn’t believe she was there. My little Houdini somehow climbed out of it. I came out to the living room with her to play and I just stared at it. I still to this moment typing this cannot figure out how she climbed out.
Frankie’s First birthday is the 28th. I can’t believe she is going to be a one year old. I am so proud of who she is becoming. She is so sweet and brave. She gets her blood tested all the time because of PKU and even though she is always uncomfortable with it afterwords she always smiles at her nurse Nicole.
She is so smart. HOUDINI baby, the escape artist, am telling you! She looks at me and smile and then will sneak off looking back to make sure I’m following her. I just sit back and wonder what is going through her brain. What does she dream about?
I’ll tell you what I dream for her. I want her to have an amazing life full of adventure and love and friendship. I just want her to always be taken care of and live in a world of acceptance and that we could go to any restaurant on the planet and they would take care of her. I’m releasing my second book next month. Frankie’s London a PKU Friendly Adventure.
If you haven’t gotten a chance to read “Frankie’s Malibu a PKU Friendly Adventure” it’s available to download on IBOOKS in the Apple Store or at BLURB.COM for your KINDLE or APPLE devices. Please download! The more ebooks we can sell, we can have more opportunity to work with larger publishing companies. We are trying to get these books available on print for kids to have in their schools, doctors offices, homes, everywhere you can think of.
Much love to you all and I hope you are having the most amazing St. Patricks Day! Now I’m gong to go see if Frankie has figured out how to crawl out of her crib. My HOUDINI baby.
“If you want to get anywhere in life you are going to have to read a lot of books”- Roald Dahl
My Dad is the most read person I’ve ever met to this day. Whenever you walk into his office there are five books open on his desk and more books laying on his floor as references toward some subject he is writing about.
Before I can even remember, my Father read to me. One of my favorite photos is of me sitting on his lap reading a story to me. To this day he still reads to a local school every week.
On average it takes 30 days to create a habit. What if you read one chapter a day for the next thirty days and that habit continued the rest of your life? Just think of all you could learn. It would open up an entire new world to you. If knowledge is power don’t we want to feel our most powerful each and every day?
So the next question what should you start reading? Well, the challenge is a chapter a day for the next thirty days. My advice is to pick a book that each chapter you can take some sort of value into your next day with. After your first month change to whatever you want to but when you are setting a habit I would choose something that would inspire you to continue. A couple books I can recommend to you to start with are,
John C Maxwell – “Winning with People” (honestly anything from John’s reading list will empower you.) I’ve know John personally for many years and I can tell you he is a wonderful human being and if you haven’t read any of his books, pick one up today. You will love them.)
Paul and Billie Tsika- “Get Married, Stay Married” – If you are struggling with your relationship I would highly recommend this book. (Mike and I were married by Paul, and he is very relatable and you will take a lot from this book)
What is your passion in life? If it’s film perhaps start with a Biography about a film maker you admire. Biographies are incredibly important. It’s important to read them because on thing is guaranteed that you will find in common with everyone. From Presidents, to the Rich and Famous, to Mother Theresa, what is that one thing? They all went through a period in their life where they had personal struggles. The second thing in common? They overcame those struggles to become who they are.
I find with reading we become more compassionate toward others.
So tonight I challenge you to put down your cell phone. That “Words with Friends” game can wait. Pick up that book that you’ve been “Meaning to read” And read one chapter. Do that the following night. After thirty days… come back to this blog and write “what you read and what you learned from it. Or something you took from that book you could pass on to another.”
I will do the same. I will start a new book tonight and come back to this and comment on what I’ve been reading. I will also read one children’s book a day to my daughter and see what happens! It’s going to be amazing.
Much love to you all and always stay inspired! We will talk April 1st!
I’m going to share with you a poem that has changed my life dramatically. My Father, Dave Severn, read this poem to me. I recite these words to myself almost every day. “Get up, and finish the race!”
We all have tough days. We all face disappointment. We all have those days where we look to the sky and yell out, “Why God?!”
But we have to put our best foot forward and keep pushing into the future. We have to try. TRY. TRY AGAIN!!!!!
There is nothing in the bible that says, “This is going to be easy”
Life is so hard some days I don’t even know how to pull through to the next. But I do. The days that are the hardest, often end with you being the proudest.
You say to yourself, “if I can make it through that, I can make it through anything.”
My daughter turned eleven months old yesterday. I thought back to the first day of her diagnosis. I remember feeling, HOPELESS. Well, here I am eleven months later, still standing, making changes to my life, and pushing every day to build a great future for our daughter.
So here it is, the poem that changed my life, and I hope and pray it will help you get through those tough days.
Whenever I start to hang my head in front of failure’s face,
my downward fall is broken by the memory of a race.
A children’s race, young boys, young men; how I remember well,
excitement sure, but also fear, it wasn’t hard to tell.
They all lined up so full of hope, each thought to win that race
or tie for first, or if not that, at least take second place.
Their parents watched from off the side, each cheering for their son,
and each boy hoped to show his folks that he would be the one.
The whistle blew and off they flew, like chariots of fire,
to win, to be the hero there, was each young boy’s desire.
One boy in particular, whose dad was in the crowd,
was running in the lead and thought “My dad will be so proud.”
But as he speeded down the field and crossed a shallow dip,
the little boy who thought he’d win, lost his step and slipped.
Trying hard to catch himself, his arms flew everyplace,
and midst the laughter of the crowd he fell flat on his face.
As he fell, his hope fell too; he couldn’t win it now.
Humiliated, he just wished to disappear somehow.
But as he fell his dad stood up and showed his anxious face,
which to the boy so clearly said, “Get up and win that race!”
He quickly rose, no damage done, behind a bit that’s all,
and ran with all his mind and might to make up for his fall.
So anxious to restore himself, to catch up and to win,
his mind went faster than his legs. He slipped and fell again.
He wished that he had quit before with only one disgrace.
“I’m hopeless as a runner now, I shouldn’t try to race.”
But through the laughing crowd he searched and found his father’s face
with a steady look that said again, “Get up and win that race!”
So he jumped up to try again, ten yards behind the last.
“If I’m to gain those yards,” he thought, “I’ve got to run real fast!”
Exceeding everything he had, he regained eight, then ten…
but trying hard to catch the lead, he slipped and fell again.
Defeat! He lay there silently. A tear dropped from his eye.
“There’s no sense running anymore! Three strikes I’m out! Why try?
I’ve lost, so what’s the use?” he thought. “I’ll live with my disgrace.”
But then he thought about his dad, who soon he’d have to face.
“Get up,” an echo sounded low, “you haven’t lost at all,
for all you have to do to win is rise each time you fall.
Get up!” the echo urged him on, “Get up and take your place!
You were not meant for failure here! Get up and win that race!”
So, up he rose to run once more, refusing to forfeit,
and he resolved that win or lose, at least he wouldn’t quit.
So far behind the others now, the most he’d ever been,
still he gave it all he had and ran like he could win.
Three times he’d fallen stumbling, three times he rose again.
Too far behind to hope to win, he still ran to the end.
They cheered another boy who crossed the line and won first place,
head high and proud and happy — no falling, no disgrace.
But, when the fallen youngster crossed the line, in last place,
the crowd gave him a greater cheer for finishing the race.
And even though he came in last with head bowed low, unproud,
you would have thought he’d won the race, to listen to the crowd.
And to his dad he sadly said, “I didn’t do so well.”
“To me, you won,” his father said. “You rose each time you fell.”
And now when things seem dark and bleak and difficult to face,
the memory of that little boy helps me in my own race.
For all of life is like that race, with ups and downs and all.
And all you have to do to win is rise each time you fall.
And when depression and despair shout loudly in my face,
another voice within me says, “Get up and win that race!”
-Dr. D.H. “Dee” Groberg