Julie Kulbago Photography is a nationally published photographer who is trained in newborn safety practices and has mastered the technical knowledge & experience to use advanced photoshop techniques to capture challenging poses safely.
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I had been dreaming about this photo shoot from the moment that I sat in my bathroom staring at the pregnancy test willing it to change and finally seeing 2 distinctive pink lines. I can even remember thinking about what I would say to introduce our 4th child to the world (yes, I know that is totally crazy). Over the course of the next nine months I shopped for baby clothes, organized the house, changed the kids’ bedrooms around and bought more photography props than I can count! While I will admit that I don’t exactly love being pregnant – – after all, 16 weeks of “all day” sickness, gaining weight, losing all sense of privacy/modesty etc isn’t that much fun. But what I do love is being a mother. I adore newborns and I love watching them change into little people. With this being our 4th baby I pretty much figured she would be the last and I was trying to savor every minute of this final pregnancy. The week before Mae was born I can still picture myself in my kitchen cooking dinner, turning Indigo Girls to max volume and singing/dancing at the top of my lungs . . . I was so ridiculously happy. I was on maternity leave, the house was clean (ha ha) and in a couple of days our new little girl would join our family.
Fast forward a few days and I’m lying on the operating table, the doctors lift her out and say “she’s here”, I hear Mae make a few faint cries and then there is dead silence from all the doctors and nurses. I kept saying over and over again “what’s wrong” and nobody would answer me. I looked towards my husband and without me even having to say anything he said – “don’t worry, I’m sure she’s fine, they are just giving her oxygen”. I didn’t feel any better – I knew something was wrong. I’ve done this 3 other times and I know that at this moment they should have showed her to me, the nurses should be oohing and aaahing over all her beautiful features, one should be saying that with her long fingers she’ll be a pianist, the doctors should be saying “congratulations, you’ll hold your little girl in a second” . . . there was none of that – – just awful, painful silence. After what felt like my 100th attempt for someone to tell me what was wrong someone said “she’s moving all 4 limbs and breathing” . . . not exactly reassuring and I was now certain something was wrong. I have no idea how much longer it took but finally a pediatrician I had never met before, still behind his surgical mask, looked down at me and said “your daughter has Down syndrome”. I don’t remember very much after that but all I remember is crying . . . the kind of cry that is so deep in your soul that you make sounds that you don’t even recognize. I couldn’t even look my husband in the eyes because seeing the pain in his eyes was more than I could handle at that moment. I do remember him taking my hand and squeezing it tight and we just sobbed. Trying to piece together the next few days is still extremely difficult. I can remember my husband calling our family to say that she was here and hearing him say those words sent shock waves through my body . . . even worse than when the stranger said them to me because my husband was now talking about our daughter. I can remember the nurse asking if I could nurse her because they wanted her to eat – – I am so ashamed to say that I couldn’t even bring myself to try because I was sobbing so hard that they ended up giving her a bottle. I can remember crying . . . “I can’t do this”, “I don’t want to do this”, “things like this don’t happen to me/us”, “this is a mistake”, “this is a dream and I’ll wake up soon”, “they’ll be wrong and then they’ll be apologizing soon”, “this isn’t my baby – take this one back”. Everyone has told me that you need to experience that grief so that you can move through it to the joy. At one point I can remember looking at myself in a mirror and not recognizing the person staring back because my eyes were so swollen and actually bruised from crying – – it looked like I had gone several rounds against Mike Tyson.
The next 24 hours were an equal blur — I just couldn’t shake the feeling that this still wasn’t happening. It all felt so surreal. Like at any minute I would finally wake up – – or that the doctors would come in and apologize for their grave mistake. At the same time I knew they were right. I had to start attempting to bond with this new life while grieving for the child that didn’t arrive. It felt like a death to me. The little girl I had been picturing for 9 months had just disappeared. All of the clothes I had bought, the nursery, the books – – they were all for a different child – – I couldn’t picture Mae in them. It felt as if someone literally handed me someone else’s child and said “here, love this one”. I was terrified that I wouldn’t bond with my own child . . . because I had already bonded with a different one that didn’t arrive. I can remember holding her and just saying “I love you, I love you, I really do love you” – – half so she could hear it and half so if I heard it maybe I would feel it.
Our family started coming in on day 2 (in my pain I requested everyone stay away that first day because I was too emotional and just wasn’t ready for what I thought was to come). I can remember being nervous when my family walked in and looked down at my little sleeping angel for the first time. I felt myself holding my breath and wondering what they were really thinking – – would they be analyzing the slope of her eyes or the extra skin on the back of her neck – – could they (or could I) see beyond that and love her like the others? Without missing a beat they scooped her up, held her, kissed her and oohed and aaahed over how beautiful she was. Seeing our family accept and love her unconditionally was one of the greatest blessings.
Ok, so I’m going to fast forward again because I never planned on writing this much but . . .it’s now been 5 weeks since Mae was born and the shock has worn off and I have totally fallen in love with my daughter. I can honestly say that I don’t know how or when it happened – – it’s kind of like watching your children grow up – – you never actually see them getting taller but you look at them one morning and think “when did this happen?” I guess I was afraid that I couldn’t love her like I did the others (kind of like how when you have your 2nd child you wonder if they’ll ever match up to your 1st). It kind of seems like such a crazy thought now because I absolutely do love her! I don’t know when but all I know is I found myself running to her bassinet in the middle of the night after she had an unexpected long stretch of sleep just to make sure she was still breathing (just like I did with the others!)- – I find myself staring into her huge brown eyes and telling her that I love her with my whole heart – – I have totally fallen head over heals in love with this precious innocent baby and will love her and give her the absolute best life possible. I actually already have my eyes on a college she can attend!
People far more wise than I am have told us that “we are not here for her – but rather she is here for us”. I fiercely hold onto that sentiment and I can honestly say that I don’t know exactly why Mae was given to us but I am absolutely looking forward to finding out. I have started to think that maybe God wants me to show the world how beautiful all of his children are. Even before I had Mae I was starting to get really frustrated that there is such great focus in the photography world (and everywhere else) around stereotypical beauty and “perfect” families . . . that’s all you read about in blog posts of moms that weigh 90 pounds and dads that look like they strolled out of J Crew ads and kids who look like “photoshopped” barbie dolls. Maybe that’s real for some families but I know that is not reality for most. When I got home from the hospital after having Mae I actually couldn’t stand the look of a lot of my photography props and put them right on the curb for the garbage collectors . . . everything felt so fake, so staged – – all to give an appearance of perfection – – that’s not real. I don’t know how exactly but I think my photography may start to have a new focus. I want to be able to show all children’s beauty and real family perfection . . . perfection that comes from happiness and love with/for each other. So, with that I present to you my perfect Mae.
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So I bawled through the whole entire post… what a statement her life has made already! She is absolutely perfect in every way…. congratulations again Julie! I foresee many more blessings coming your way! 🙂
What a touching post Julie! I’ll stop crying in a few hours :). The pictures are beautiful. She’s absolutely precious and perfect indeed!
Julie,
I admit when I saw the length of this post I wasn’t going to spend time reading it. BUT I did, and I am so glad I did. Your story brought a tear to my eye. Amazing how God uses our trials in life to bring us far greater blessings than we could have ever “dreamed” up. As a mother and aspiring photographer I can really relate to you with the worldly view of perfection and beauty. I have myself been wanting to capture the REAL beauty of any family and any person. The true beauty just as God created them, making them feel special and wonderful just the way they are. As photographers, we can make or break someones confidence, there is nothing I love more than helping an insecure woman come out of her shell and feel beautiful on a shoot even though she thinks she is a house. Or to make a shy and scared little child belly laugh like they are playing at home. Your story has encouraged me as a mother and a photographer to keep it REAL and to remember all of His creation is beautiful, no prop or Photoshop tool can top His masterpieces. That being said, I found myself crying with joy for you as I gazed upon your MOST BEAUTIFUL baby girl! I smiled and laughed at her cute little smile! She is PERFECT! 🙂 Your family is right I think she is here for You, and her life and story as your daughter will inspire others for years to come. Keep focusing on God and teaching her all about Him, soak her preciousness up! You are blessed 🙂
Julie,
We have been waiting patiently to see Mae. You are meant to tell your story and to take Mae’s pictures through life. What a beauty! Thank you for sharing your sweet baby girl with your number #1 fans!
Lots of love,
Lauren and Bob Kopicko
Oh, Julie… this is beautiful. Tears are in my eyes, but they are happy tears for you. I am so looking forward to watching Mae grow up!
I am sobbing…this is the most heart felt thing I have ever read in my life! I hope you send this to some parenting magazines because their are so many moms that need to read this!!! You are so blessed to be able to see God working in your life!!!! Your sweet Mae is perfect and will bless so many lives!! I just can’t wait to watch her grow and read your blogs (and I do not follow blogs ever)!!! I had a kindergarten student tell me one time that angels are all around you! Something about the look in her eyes as she looked past me, I knew it was true! When you believe like that, you start to see the beauty of God’s work everywhere you look! I am so blessed to know you and to get to read your story!! I am sending you a HUGE hug today and lots of prayers! God picked you for a reason to be Mae’s mommy, enjoy every single moment!
Julie,
Mae is a beauty! She will bring you more happiness than you can imagine. She may bring more struggles along the way than a “typical” child, but she will be able to show you the true joy and blessings in life. You and your family are truly blessed and I wish you nothing but the best!
Shannan
Beautifully honest post and honestly beautiful photos! My favorite is the one with Mae’s open, she looks like a viking baby.
Mae is gorgeous! Thank you for sharing such candid honesty. A lot of people do not understand when things are different then predicted, you do mourn for what you thought would be. My oldest has autism and while finally having a diagnosis was a relief, I did a lot of crying. Her ‘symptoms’ sometimes are the best part of her <3
Julie, I have never been more moved and/or touched by your words…. your words of an emotional roller coaster and how you have gotten the internal strength to overcome being scared and “why me”. I commend you for your spirit and God will guide you as you have delivered a beautiful baby girl, “Mae”. She is a wonderful gift in that you will share with the whole world through pictures. I will keep you and your family in my prayers. Many blessings to you and your family near and far. Today, tomorrow and forever, Connie Richard
P.S. I will have to keep your website in mind and let others know about your beautiful photography.
Your daughter is one of the most gorgeous babies I have ever seen. I had a miscarriage recently because my baby had down syndrome, and it’s so great to see a baby that has down syndrome look so Pretty and peaceful. Congratulations!
Awe that was very heart touching hearing your journey of your birth of Mae. She is so precious and I pray for you and your family for strength and continued passion. We need more photographers like you.
Your Mae is absolutely perfect! I was SO touched by your story and wish you love and many, many years of happiness for your entire family. I need to go get another tissue and wipe the rest of the tears from my eyes. You are a beautiful person and God has certainly blessed you!
When you were doing this photography shoot I had no idea what treasures you had captured. Mae looks absolutely adorable, you have caught her innocence and beauty. I do believe that God has found a way of getting the word out that downs syndrome children are as beautiful as those who are not through you. Love, Rita
Julie- What a gorgeous baby girl….she is just perfect! I have been thinking about you lots. You know I have a special needs child and while not diagnosed at birth, I too have gone through that death of dreams. But believe that this will be your greatest blessing. At times when you think you can’t do it- it’s too tough- or your not cut out for this- or why me…you will know. You were chosen. You for her and her for you. It is all in His plan. I have become something inside that I never even knew was possible because of my little guy. Embrace this gift- you guys will be great and I do mean GREAT. Call me if you ever need to chat <3 Welcome to the world Mae!!!! We all love you already!
Of course, these pictures are beautiful (as your photos always are). What is even more beautiful is the wisdom of the words and the vision in your blog post. Choosing to see, and think, and feel about Mae through God’s perspective is so inspiring- and clarifies the truth of the experinece of life. Not the “staged perfection” that we pursue so hard; rather the reality of the life that God has created and invites us into. We are honored to share Mae’s life with you for each step of her journey. God Bless!
This beautiful tiny angel is God’s masterpiece! Thanks you for letting me meet her at the Emmaus celebration yesterday!! I am so proud to share a birthday with this tiny princess. John and I would like you to know that we will be honorary babysitters from this day forward for any and all of your children. We are so very proud to know you and will keep your blessed family close in our hearts!!!
Wow! She is such a beautiful and precious baby! I pray the Lord will use her to help you (and countless others!) have fresh eyes and attitudes at the gift He gives us through our children! Beautiful images of a perfectly beautiful girl.
Clowns of God
“I know what you are thinking.(a little girl with Down’s Syndrome).
You need a sign. What better one could I give than to make this little one whole and new? I could do it;but I will not. I am the Lord and not a conjurer. I gave this child a gift I denied to all of you…eternal innocence. To you she looks imperfect-but to Me she is flawless, like a bud that dies unopened or the fledgling that falls from the nest to be devoured by ants.
She will never offend Me, as all of you have done. She will never pervert or destroy the work of My Father’s hands. She is necessary to you. She will evoke the kindness that will keep you human. Her infirmity will prompt you to gratitude for your own good fortune…More! She will remind you every day that I am who I am…that my ways are not yours…and that the smallest dust mole whirled in the darkest space does not fall out of My hand…I have chosen you. You have not chosen Me. This little one is My sign to you. Treasure her!” By Morris West
Julie, your little one is so beautiful! As i read the post i was in tears. I know you absolutely love your precious baby girl and it is such a great way to show the whole world that children with Down Syndrome are perfect like they are. A gift from God!
Julie, your words are beautiful and your baby girl is precious. Life is never perfect… and neither are we…. but I know you will be the perfect mother to Mae (and the other 3 gremlins too!). Your family is so lucky to have you. Whatever direction you take your photography and your family, I have no doubt you will be blessed beyond measure. xo
She. Is. Beautiful. My heart is touched…and I’ll never forget yours and Mae’s story. She will be an amazing woman…
What a wonderful story, as I read this I have a 5 day old and I just cried threw the whole thing, Mae is so beautiful and such a perfect little girl who will teach us all something! The photos are amazing!
God Bless
Just completely beautiful! Your honesty, the baby, the photos…absolutely great! Congratulations on your sweet little girl!
What a beautiful post. Your daughter is so beautiful and you have a beautiful heart. God bless you and your family!
God will bless you a million times over. Thank you so much for sharing your story publicly. It’s so neat to already see him using you and her for His glory! She is absolutely beautiful! Congratulations, Julie!
~Dana
Thank you so much for sharing your story and the photos of your beautiful little girl. . .
That was an absolutely amazing and heartfelt story. Mae is an adorably beautiful little baby! I could never feel what you felt when you heard those words but be thankful because those wise people were right, she is here for you not you for her! Enjoy your lives together! 🙂
Hello beautiful Mae, You are such a lucky little one, god placed you in a wonderful loving family. Your mommy has introduced you to us in a very beautiful way. Her story pulled my heartstrings and her photos of you are beautiful! Your beauty, both in and out shines through. I cannot wait to meet you in person, hold you in my arms and say hello sweet Mae!!
what a beauty 🙂 …..Glad to see another Blessing into this world !
Congratulations! She is beautiful! My children and I just looked at all the pictures of your sweet Mae, and my 5.5yo DD who has down syndrome got so excited and cried out “bebe!” and kissed each pic! Thanks for sharing the pictures and your story! Look forward to meeting you in the burgh one day!
Gina & Sean, Maeve & Michael
Pgh
Until I became the grandmother to a beautiful boy with Down Syndrome I had never experienced innocense or joy. God gave us a special gift when he sent us Peter and we are privileged to live in his world. No hiddened agendas, only the purest love, like Christ loves us.