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Wednesday, June 12, 2013

Dear Friend...

It was me and Clay and my bump of a baby.  I was 33 weeks pregnant.  I had just finished my ultrasound and was waiting for the doctor to come back into the room.  Clay was watching the old school Mickey Mouse episodes on my phone.  You know, the ones that have some adult humor and aren't sooo PC.  The ones where I find myself giggling too.  Where Donald is extremely grumpy and Mickey Mouse talks in an even higher pitch.  And then the doctor walked in.  And I knew I was getting bad news by the way he walked past me and headed straight for his seat.  He looked me in the eye and said, "Your daughter has dwarfism."  And he set the Kleenex box on the counter right under my nose.

This is where my journey began.  With this news and any other news about your child, your parent, your friend... or even about you... the journey begins here.

This is where we all veer off in different directions.  How we handle the news and every day forward after that is what makes the story our own.


And with that said... here is my letter.  It is written for an average height mama and daddy who just found out their baby has dwarfism.  It is a letter I wish I had eight months ago.  It is a letter that we can all learn from.


Dear friend,

I know.  The word "dwarfism" is sitting in your throat like a lump that cannot be swallowed.  I know.  The sentence that informed you life would be different has been repeated over and over again in your mind like a broken record.  I know.  Your visions of the future are now blurry, vague and even scary.  I know.  You feel like you just got pushed into a new world that is very different from your own.  I know.  You fear judgement.  You fear ridicule.  You fear different.  I promise, I know.

This is what I will tell you... take a deep breath.  Like a really, really deep breath where you get all that extra air out of your lungs with a 10 second exhale.  Let yourself feel what you need to feel.  Grieve the baby that you imagined if you need to.  Cry and sob and cry some more.  And then repeat after me, "Everything is going to be ok."  Say this often.  Say it out loud.  Say it into the mirror.  Say it to your spouse.  Say it enough until you start to believe it.  Because... everything really is going to be ok.  I promise.

I understand because I was in your shoes.  I am an average height mama married to an average height man with an average height two year-old.  The word "dwarfism" wasn't even on my radar.  Until, I received the news at 33 weeks pregnant, that my baby girl would be born with achondroplasia.  And I was sad.  I was worried.  I was scared.  I understand because I was in your shoes.

And those feelings are natural... and expected.  And receiving news that your baby will be different is hard. 

But, I want to tell you something.  Something I figured out pretty quickly... hard doesn't always mean bad.  I knew this would be a journey for our family.  I knew it would change us and force us to open our minds.  I knew it would cause us to take a good look in the mirror and do some real soul searching.  No, those things aren't bad... just hard.  But isn't anything worth attaining require some sweat and tears?  Hmmmm... yes, I believe that to be true.

What I know now that I didn't know then: this journey would be the best thing that has ever happened to us.  To me.  To our family.  I allowed this journey to change me... to be better... to teach and lead by example... to make a difference... and I now consider myself one of the lucky ones.  It's kind of like that free "go to the head of the line" pass or the shortcut through the jolly jungle (or whatever it's called) in Candyland.  Well in this case, you get the shortcut to happiness if you allow yourself to understand how truly lucky and blessed you are.  And I will tell you something my doctor told me on the day he told me the news... "In a year from now, you will wish nothing is different." Trust me, when I first heard him say that I had a jaw-dropping, "What?!?" look on my face.  I thought, "Why would I ever think that?"  Well, I think it.  And I am hoping you do too.

I remember the questions... so many questions.  I remember googling.  And it was too much information, too difficult to read and sort through it and make sense of it all.  It was overwhelming.  Just know this... yes there are some increased risks with each type of dwarfism.  Choose an awesome doctor and an even better geneticist and come with your questions in hand.  And repeat, "Everything is going to be ok."  And if you do get overwhelmed... take a step back and just focus on one day at a time.    Keep your thoughts positive and the rest will follow.

Now when I think of my daughter, I think of her personality above anything else.  Yes, she is tiny.  Strangers kindly remind me this everyday and I smile and secretly thank God one more time for making her the way He wanted her.  But her tininess is just one of the many words used to describe her.  She is spunky.  She is determined.  She is smiley.  She is a mover and a shaker and I already know, she is going to do big things.  I have never seen so much ambition to do more, see more, be more in a seven-month old baby.  She loves life and I love that about her.

And so, my friend... do not be afraid or scared of your bright future.  You will come to see that different is so beautiful.  For if you had my perspective of time and a little bit of experience... you too would see that things are just as they should be.  And life is oh so sweet.  Your baby may be little... but never underestimate little.  Now, when I see a tiny little ant carrying 50 times his own weight... I get it.  You don't have to be big to live big.  Please teach this to your child.  To your family.  To your community.

Lastly, congratulations on your new baby (or toddler or however old your child may be).  Take advantage of this journey and take time at every step to really get the most out of each lesson, each moment, each opportunity to grow in the depths of your character.  And when you stumble, repeat, "Everything is going to be ok."  But really, just between us... it is going to be way better than ok.  It is going to be incredible.   








61 comments:

  1. Beautiful xoxo Your words and your heart.

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  2. What a great post, I agree, I wish I had that letter when we found out. At least you were in your Dr.'s office, we got a phone call. I guess it doesn't really make a difference how you find out. A friend gave me the store "Welcome to Holland" it changed my mind set and really pushed me out of my "grieving" for normalcy. Our life is amazing as is yours, different is ok. Thanks for the post and I LOVE your pictures!!!

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    1. Yes, we received that letter from about ten different people, and it was helpful. Thank you for reading and following our story... we really appreciate it! XOXO Leslie

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  3. Perfect post! She is beautiful! So is your whole family <3

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  4. What a great letter! I wanted to ask... is this not something they usually detect at your 20 week ultra sound? I don't know anything at all about this, so I was just curious.I just noticed you said you found out after an ultra sound at 33 weeks. I hope you don't mind me asking. Thank you!
    Casey

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    1. Thank you! Oh, I am so glad you asked and I will always be willing to answer questions! It is not something that can be detected at the 20 week ultrasound according to my doctors. In fact, my doctors knew that if my 20 week ultrasound was measuring fine and my 33 week was off.... that was a big clue that dwarfism could be the case. Looking more at the measurements and having more ultrasounds, it was confirmed at a 99% chance and it was confirmed at 100% chance once blood was drawn from Lilah at birth. I hope that helps answer your question! Thank you for reading!! XOXO Leslie

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    2. My daughter (now 5 years old) didn't get the diagnosis until she was nearly 8 months old. We had a ultrasound at week 18, then once a week for the last 5-6 weeks of the pregnancy - and every time we were told she was average.. so no, it's not always detected early because it's a rare condition and because it's not always that easy to spot when they're new borns (unless you have experience with other children with achondroplasia).

      Leslie: thank you for this letter. I will bookmark this page and show it to new parents I meet in the future. Things will work out!

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    3. Thank you for your comment... so true, I know it isn't often detected before birth. I know mommies whose baby was diagnosed at a year and a 19 months! It is a rare condition, so true.

      You are welcome for the letter. I appreciate it a lot. Thank you for reading and for your support.

      XOXO

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    4. Hi, Thank you so much for having this blog and sharing your story. I am currently pregnant and am going to have a repeat ultrasound next month because some of the babies measurements were "off". I was wondering how they knew from your ultrasound that your baby had achondroplasia? Thank you for your openess on the topic!

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  5. Beautiful letter. I agree that different is awesome. My son was born right before Christmas and I often tell people that he is "my gift from God. The best gift I never knew I wanted or needed." He is now 8 years old and life is only getting better.
    Jennifer

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    1. That is beautiful.... I can really appreciate that. Glad to hear life is so sweet... thank you for paving the way for people like me. XOXO Leslie

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  6. BEAUTIFUL!!! We love your sweet family and this letter will be something parents will pass on to new POLP.
    Thank you for writing this.

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    1. You are welcome and we really appreciate you and your blog too. I love how we are all spreading our stories and spreading love too. XOXO Leslie

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  7. Love this. I also wish I would have found this 1.5 years ago!

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    1. Me too! I have lots more letters and ideas for down the pipeline... stay tuned.... XOXO Leslie

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  8. thanks for sharing!!!

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  9. Thanks for sharing your beautiful story with everyone. Very touching and ohhh solo true.

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    1. Thank you for reading... we really appreciate it! XOXO Leslie

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  10. Beautiful letter, beautiful family !!! Xoxo

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    1. Hello friend!!!!! So great to hear from you! I think of you often and hope all is well with you!! You need to get on Instagram so I can see Lyla everyday!!! OK?!? :) (dreambiglittleones is my IG name)

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  11. This letter is just what I needed! I can't even express how much I appreciate you and all the others who blog in this community. Congrats on your precious little girl.

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    1. Thank you so much! FOr me, blogging is my therapy and my way to shed light on my daughter's story. For those who know her love her and I want everyone to know her. Thank you for reading! XOXO Leslie

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  12. As a Grandma of 6 beautiful grandchildren, I have come to realize that God compensates when a child has physical problems. I absolutely know that my granddaughter who has dwarfism is meant to do great things! My daughter and son-in-law have handled the news about their daughter (after the shock wore off!) with love and wisdom. I already can't imagine my life without this three year old who brings us so much joy!
    a lucky Grandma

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    1. That is fantastic and kudos to your daughter and son-in-law. Great to hear... grandchildren do bring such joy! You are so blessed! XOXO

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  13. What a beautiful family; we are the average sized Mom & Dad with a son born in 1981; before Google etc. We did not know until after he was born. Our Son Anthony is now 31 a successful man who has taught us so much over the years. Our advise would be lots of hugs and kisses! Thank you for sharing your letter and beautiful family. H & K, Dave & Nora

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    1. Thanks so much for the advice! Will do! XOXO

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  14. What a beautiful family! Little Lilah is an angel! I have a son named Seamus who is nearly 8 and has achondroplasia. After his birth, the best words I ever heard from a fellow parent of a little person were, "Everything is going to be ok!" A journey that began with so much fear and uncertainty has become the greatest, most wonderful adventure of our lives! (Our family blog is camengafamily.blogspot.com.)

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    1. So true! Those were great words for us too. And now they are better than Ok! Yay! Thanks for sharing! XOXO

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  15. What a beautiful.story . Even tho I have four beautiful.Chidren that are healthy your story has touched my heart . Every Child is a gift from God . It doesn't matter what condition they have . I will be passing your letter on so that other parents can see that it doesnt matter what condition their child has they can still do any and everything they want to do in life . No matter how big or small . Your Daughter is soooo beautiful and im.sure she has a big heart that will allow her to do big things in life . Take care and enjoy your beautiful gift from God . Much luv come from Houston Tx. Xoxoxo


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    1. Thank you so much for reading and sharing! I really appreciate it! XOXO

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  16. This is so beautiful! As a 29-year old little person adult, I want to be here to answer any questions at any time that you may have! It's been a wonderful journey for me but it stems from having an amazing family. I know that your family is already amazing! Check out www.beckymotivates.com and I'm here to answer any questions that you may have whenever you want to ask!

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  17. Thank you for writing this! You have expressed so beautifully the feelings from both sides. I also found out while pregnant about our daughter having achondroplasia. It was a lot to process, but with great medical attention and support from family and friends (and our new LP friends), it's been better than I could have dreamed. Molly is 15 months old now, and just about a month ago, I realized that I would not change one thing about her. Thanks for sharing and I know this will help a lot of parents out there.

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    1. Awww.... your story sounds just like mine! How wonderful! Thank you for sharing and I am hoping one day our daughters will get to meet! XOXO

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  18. I also have a little boy with Achondroplasia. He is 15 months old and just learned to walk (and its the cutest thing I have ever seen). I started a blog for him when he was first born (www.tinyhandsbigheart.blogspot.com). I must admit tho I've been a bit of a slacker and your blog has motivated me to get back into writing. Your letter describes all the thoughts feelings and emotions I felt just perfectly. My husband and I escaped for a weekend alone a few weeks ago and we got talking about our Cal and we also wouldn't change one thing about him. He is perfect in every way and we look forward to this new and exciting journey we are on. Excited to follow your blog and watch your little one grow!!

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    1. Lol, mamas are never slackers... I know this! Cal is perfect and I am so glad you feel the same! Thank you for finding us and following our story! XOXO

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  19. I only wish I was able to read what you have written 35 years ago, dont get me wrong I would never want to be without my son he has achondraplaisia, now happily married and hoping for a blessing of thier own in the very near future.The doctors never told me my son was going to be a little person, even tho as a Mum your gut tells you things are not right. We were very blessed and I had a wonderful supportive family.His two year old sister idolised him. My thoughts have always been God gave us these children for a reason. I know mine he sure helped keep me sane. Be strong

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    1. Thank you for your comment... I do think God picks special people to be parents to these special children. I am so honored He picked me. Thank you for following our story! XOXO

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  20. great letter, I was married to a man with achondroplasia and together we had 2 children, our son who now stands at around 6'3" and our daughter that inherited the gene. She is getting married in September to a fellow who is also around 6'3" and together they have a 10 month old son who didn't inherit the gene.

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    1. Very cool! Thank you for finding our story! We appreciate you reading along! XOXO

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  21. My daughter is 18 months old, born with achondroplasia, let me tell you that now i can agree with every word that you write in this letter, but you have no idea how much i would love to read this letter 16 months ago, when we found out that Ana Victoria was born with achondroplasia. Thank you for sharing this letter in your blog, i will read it every single time that i feel overwhelmed and just repeat once and again EVERYTHING WILL BE OK!!! I love my daughter in a way that i can´t describe, she has brought me so much joy and happiness in my life that i can´t explain...I let the sad moments behind me and i´m living one day at a time, trusting God that everything will be ok...Congratulations for your beautiful family!!!! Big hugs!!!

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    1. Congratulations! I am so glad you found this letter helpful... that's why I wrote it! I can relate to you 100% and I appreciate you sharing your story. Thank you for finding us and if you get a chance, follow us on Instagram, we have a great mama presence with lots of mamas with little ones. We love supporting each other and loving all over each others' babies! XOXO IG: dreambiglittleones

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  22. What an inspiring story... first off, You daughter is beautiful! She is just little nothing else! I stand 5', and just read earlier that the average woman is 5' 4-5", I have been called short, little, among other names. Hey...so what? Your daughter will adjust and be just fine!

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    1. Thank you!! Yes, I think she is quite lovely too! So great to hear that you are doing great and it is so encouraging to me... she WILL move mountains yet! XOXO

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  23. Tears streaming down my face as I read this letter and oh how true it really is!! I'm the grandmother of a spunky, bright and beautiful 5 year old granddaughter with achondroplasia. She's amazing and makes everyone around her, whether they know her or not, smile!! Congratulations to you an your beautiful family and what a wonderful blog! God Bless You!

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    1. Congratulations to you on your granddaughter! I believe you when you say she makes everyone smile! What a blessing she is, I am sure! Thank you for following our story and I appreciate your support. God Bless you too! XOXO

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  24. I feel so lucky that my family, who welcomed a beautiful, perfect baby girl with achondroplasia just this morning, has been able to read about and see your family over the past few weeks as we've adjusted to this diagnosis. Your daughter is beautiful, and it's clear that she brings joy to everyone lucky enough to meet her. Thank you for being an inspiration to all of us and for your positive, open words.

    My family is so lucky to have this new baby girl in our lives, and we look forward to meeting families like yours in the years to come. Best wishes.

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    1. Congratulations!! What a blessing! I am so glad that our story has been helpful for you and your family. That is the VERY reason I am so public with our story. Our Lilah is such a joy and I can't wait to hear about the endless blessings your granddaughter brings to your life too. Thank you for following the blog. God Bless! XOXO (Follow Lilah on instagram: dreambiglittleones)

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  25. hi, i m on my 36 weeks and the baby was diagnosed with dwarfism. i dont know how to deal with it for now, im so scared what kind of life she may have, how she gonna treat by other people..... im so lost... :(

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    1. Sweetie... it's ok. I understand. It is ok to feel that way. Please email me your info so I can call you. laspencer01@gmail.com

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    2. hi leslie, email sent. thanks

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  26. Just read your letter because someone on POLP shared it with a new mom-to-be. You wrote exactly what is in my heart! My daughter is now 16 years old, driving and preparing for college! I would not change a thing about her - she is absolutely perfect and I will mourn the day she leaves our home to find her own way but will also rejoice in her independence.

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  27. Our daughter was born on 8/22/14 with Achindroplasia. Like you, we found out at 33 weeks. Reading your story was like a trip back in time, it perfectly describes how I felt and reacted to the news. Now that our sweet baby girl has arrived we could not be happier or more blessed. I'm hoping to connect with others to learn and be inspired by their journeys. Even things a basic a where to find well fitting clothes are sure to be a challenge for us as we live in a small town in NH. Thank you for sharing your beautiful family and experiences with us!!

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  28. You have such a beautiful family. Happy New Year.

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  29. My Daughter and Son-in-law found out after their baby boy was born that he had achondroplasia. Her doctor never saw it even after the baby was delivered. It was the pediatrician that told them. They had no time to prepare. They had a rough beginning but I know as his grandmother I loved him from the beginning and they both love him so much. God knew our family would not be complete without him in our lives. He really is Sunshine on any day. I hope all new parents who have a child with achondroplasia read your blog. You too are a blessing.

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  30. Thank you for this! We found out that our son will probably have some sort of dwarfism at 23 weeks. My water broke at almost 29 weeks and I am now living in the hospital (for up to 5 weeks) waiting on a baby boy who probably has some type of dwarfism - along with 2-3 other anomalies (which will not be determined until after his birth). I needed to read this, and I'm so glad I've found your blog/instagram/etc. Thank you for your openness and honesty. If you want to read our story I'm trying to journal here - http://www.caringbridge.org/visit/ourjourneywithjohn

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  31. Thank you for this! We found out that our son will probably have some sort of dwarfism at 23 weeks. My water broke at almost 29 weeks and I am now living in the hospital (for up to 5 weeks) waiting on a baby boy who probably has some type of dwarfism - along with 2-3 other anomalies (which will not be determined until after his birth). I needed to read this, and I'm so glad I've found your blog/instagram/etc. Thank you for your openness and honesty. If you want to read our story I'm trying to journal here - http://www.caringbridge.org/visit/ourjourneywithjohn

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  32. This just touched my heart so much.' I can't say thank you enough!! It really is the hardest thing to describe to people but you nailed it, every word.

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  33. Thamk you for your story , how you found out ,thank you for writing the letter that has eased so many hearts and minds today and days to come our grandson is due I a couple of weeks, they found out at about 25 weeks ive we've had all those feelings and fears and I know its normal now we are waiting to meet our little guy Trenton with love and anticipation ,excited to see his little face ITS all going to be ok better than ok thankful I found this letter today , what a blessing it is to so many God bless you and all.our little ones

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