[guestpost]Today’s guest post is by my friend, Courtney Westlake. Like so many of us, Courtney has quite a story, and is the author of newly released book A Different Beautiful. She lives in Illinois with her husband Evan and two children, Connor and Brenna. After Brenna was born with a severe skin disorder, Courtney began chronicling family life and experiences raising a child with physical differences and special needs on her blog. You can follow her on Facebook and Instagram.[/guestpost]
When my husband, Evan, and I found out we were expecting a little girl, joining her big brother Connor in our family, we had a vision of pigtails.
We pictured a little girl toddling around the house chasing her brother with blond pigtails bouncing on the sides of her head.
But on the afternoon of Brenna’s birth, four weeks early, that image of pigtails was torn from our minds. There was complete shock in the delivery room when Brenna was born; Evan almost fainted at the sight of her, and the medical staff frantically called for a neonatologist.
Brenna was covered in plaques so thick they almost looked like armor, which were split by deep fissures. Her eyelids were flipped inside out, her fingers and toes were short and clenched, and we could barely see her ears. Brenna was rushed to the nearby NICU and diagnosed with a very rare, very severe genetic skin condition called Harlequin ichthyosis.
What her condition essentially means is that her skin has trouble doing the jobs for her body that skin typically does: it doesn’t hold in moisture, it doesn’t keep germs out of her body – so she can get skin infections very easily – and her skin has a difficult time regulating her body temperature. She can’t physically sweat, so high temperatures are dangerous for her, and she gets cold very easily.
Brenna’s body recognizes this error in her genetics, so it tries to make up for that error – by making more and more skin. She produces skin around 10 times faster than we do, and she can’t shed it quickly enough, leaving her with an appearance of a severe sunburn all over her body.
Interestingly enough, another effect of making too much skin is that this kills off her hair follicles. When she was born, we could see clumps of dark hair grown into her thick plates of skin, but as those original plaques of skin began to peel off, they took her hair with them.
However, as Brenna got older, little strands of white-blond hair began to emerge from her scalp around the back of her head. And her hair has continued to grow in, little by little, with small tufts on top and longer around the back.
One evening when Brenna was nearly three years old, I prepared as usual for her post-bath routine while Evan completed his scalp care. He was taking longer than usual to finish up bath time, and just as I was about to ask if he was almost done, he called out to me from the bathroom with a laugh: “Look at this!”
As I entered the bathroom, I peered into the tub to see him gently twisting tiny curly hairs near the base of Brenna’s neck.
And there they were: our blond pigtails.
We laughed, and we took pictures, and we exclaimed to Brenna how beautiful her hair looked as she proudly patted her head. Suddenly, fashioning pigtails into our daughter’s hair became so much more special than we ever imagined.
We often have expectations about what our lives will be like, what our families will look like, and who our children will be.
Sometimes, when something is different than we anticipated or hoped for, it leaves us disappointed, confused or even grieving a kind of loss. Too often, we see things for what they aren’t – how something doesn’t look, how something didn’t happen.
When Evan and I first thought about our daughter’s pigtails, the thought certainly didn’t cross our mind that she may not be able to grow much hair. And there was a time that we mourned the loss of her hair, along with the loss of many other things we expected about adding a little girl to our family that were changed with her lifelong diagnosis.
Yet, that one evening, when two tiny twists of hair emerged on her head to form pigtails, it wasn’t the kind of pigtails we imagined…. It was so much more beautiful.
Through these challenging years of raising Brenna and Connor, motherhood for me has become a journey of letting go of my own expectations so that I can truly understand and accept who my children are as God created them. Motherhood means the privilege and joy of discovering the child that has been gifted to me and getting to encourage and bring out the best version of who that child is, rather than pushing them to become the person I might have envisioned them to be.
What an incredible opportunity we have to get to know our children as they grow up, to learn who they are as God created them – with such unique talents, abilities, and purpose – and help guide them toward Him.
Sometimes, pieces of our lives look so different than what we expected that we don’t even notice how remarkable they actually are or how much they have actually changed us for the better. Motherhood doesn’t often end up like what we had planned, but when we can see the beautiful in the unexpected and in the different, we can start to celebrate the joy of what is, instead of mourning what isn’t.
I found that when I began letting go of the loss of my own expectations and plans, it was then that I was able to begin more fully living in the extraordinary life that God has planned for me… like the incredible beauty of tiny twisty pigtails.
[reminder]Does your life look differently than you imagined? If so, what ‘different beautiful’ has this made possible? Answer this question in the comments below to be entered to win 1 of 5 copies of Courtney’s new book, A Different Beautiful! [/reminder]
Great food for thought and very inspiring, as I find myself in a very despondent and lonely time in life.
My life has turned out very different to how I expected when I came to Christ over twenty years ago……my husband is still a non believer, my children who had been believers have both walked away and become very antagonistic towards Christians, and my closest friends who are believers have moved far away and I feel quite alone and like a lone ranger Christian.
I know that Christ is always with me, but I think we all need closeness with other believers who can encourage us……
Very encouraging to read of how you are handling the disappointments and challenges that have been given to you, and your children are adorable!
Thank you for your honesty and sharing your story, it has encouraged me…..
We have a granddaughter who is developmentally delayed. She has to be taught everything even holding a sippy cup. She is truly a gift to our family. Blessing to you as you love and care for your beautiful daughter.
I will give this book to my son and daughter – in – law if I should be the lucky person but if not I will definitely buy the book.
I married my Pastor’s son, and we were always told there was a calling on his life. We didn’t have a clue the twisted path that we’d walk to find that calling, and indeed, still haven’t fully. But it had many low, dark valleys, betrayal, loss and loneliness I couldn’t have imagined all while raising our 6 beautiful children.
But, what I have found, is that there is a Friend who will never leave nor forsake me, is faithful when I’m faithless, and pursues my heart relentlessly. So I’m learning to find Him every day, in all the hard things, and find the joy and peace He’s promised those who walk WITH Him.
Love this story, thank you for sharing so we can be spurred on in Christ by each other!
Such a beautiful example of God’s grace on your family! What beautiful smiles. I can’t wait to read the book.
What a beautiful picture painted.
My life is different than what I picture for myself. But I’m constantly asking the Lord to show me the beautiful. And I’m so thankful for the daily reminders and the slower paced life that has allowed me to see so many beautiful blessings.
I was told I couldn’t have children without fertility drugs and that it was because of my hormones. I was picturing a future that would include traveling, working, enjoying life with just a husband. 20 years later I have 4 kids and a wonderful hubby. Not at all what I had pictured for us!
Wow! Congratulations! What a beautiful miracle.
In April 2015 my beautiful 27 year old daughter had a sudden cardiac arrest. She was revived then diagnosed with a rare genetic heart defect called Long QT Syndrome. She had a defibrillator implanted in May 2015. However in January 2016 after a traumatic night by her side in the critical care unit, she passed away of a fatal arythmia. Since January our family has been walking our grief journey. I can see beauty emerging from the pain. Relationships are deeper. We have deeper levels of compassion & empathy. Our hearts our joined with Heaven in a new and tangible way. God is nearer and we desire to share His comfort with others who grieve by making ourselves available within our community.
Thank you for sharing your family and your truths. Real faith at work is so inspiring.
After my first child was born I wanted nothing more than to be a full time mother and homemaker. Over time my husband and I were blessed with two more children. I wanted nothing more than to give up my career and love on my family. After 18 years of prayer, serious financial difficulties that lasted 7 years, a serious health diagnosis and 4 moves God answered that prayer. In my oldest son’s senior year God blessed us with the ability to move to an area where we could afford a home on one salary. At times I look back and grieve over the stress my family faced but then I remember the Lord always brings beauty out of our pain. My children are very humble children and have become very close. Those years of having to lean on one another through our moves and mom and dad changing jobs and working long hours has made them more compassionate and independent people. When guilt overcomes me from years lost to stress and depression I have
to remind myself frequently that not only was God shaping who I was but this journey was meant to shape my children’s past as well. God is good all of the time 🙂
Ah, yes … learning to trust the sovereignty of God. So hard. So worthy.
Oh my goodness, what a story! More and more I realize how so much of life depends on our expectations. In my case, it wasn’t an expectation so much as a desire, for a “normal” family of origin. We got off to a bad start. It got better. Then it went bad again. I am constantly reminded of something I heard Beth Moore say: “When God says NO, it’s because he has a better YES.”
God bless you and your precious family, Courtney:)
I, too, had a burning desire for “normal” family. Took me a long time to let that unrealistic expectation go! What a relief for everyone around me when I finally did. 🙂
I’m so glad that I read this! Our grandson has apraxia, and is finally talking, although he is high-pitched and sometimes really hard to understand. But he has made such great strides, at a time when it was thought he might never talk. And he is the happiest little fellow that he always has us smiling with him! He is precious like he is!
Wow, what an inspiration you are to all moms! THANK YOU for sharing this. I believe we all struggle with trying to control how things turn out, even small things, and your story is a wonderful depiction of letting go, and letting God! A new goal to strive for as a mom….thank you!
You said that so well, Bobbie. We ALL struggle with control, in the big and little things.
I’m right where you and your husband are Courtney, learning the meaning of beautiful from a daughter who is different from who I expected her to be, but yet so much more! Thank you for this sweet and powerful message. I hope to read more about your story soon. God bless you and your precious family.
My life is different than I thought it would be. Asking God for peace. Nothing like this couple have experienced.Would love to read this book !!
In March of this year, my daughter and son-in-law were expecting their first child, my first grandchild. She experienced complications, which landed her in the hospital for almost 5 weeks before her son was born. Based on a family history of ichthyosis and numerous ultrasounds demonstrating abnormalities, the doctors suspected harlequin ichthyosis. While we awaited his birth, we spent considerable time searching out all we could about the skin disease. And it didn’t look good. Then we came across Brenna’s story. Words cannot express how grateful I am to Courtney for sharing their journey thus far. She helped me to see, even a skin disease as serious as harlequin ichthyosis is “doable”, and yes, even beautiful! Born 7 weeks early, my daughter’s little guy does have ichthyosis but a much milder form than expected. Thank you, Courtney, for sharing your story! You helped us have hope during a very difficult time.
Beautiful. I love it when God orchestrates the intersecting of stories. Thank you for lending us a bit of your courage, Laura.
I always thought that I had a normal family life growing up. Hoping to become a nurse or teacher, however,
as I grew older I experimented with drugs, alcohol and sex. Not realizing at the time that I did this to numb myself from the sexual abuse I experienced at 8 years old.
It still affects me, still haunts me 53 years later.
So no, my life didn’t turn as I dreamed it would.
I’m so sorry, Mary. So very sorry. No child should have to endure such. <3
I always dreamed of being a mom. The only kids God blessed me with biologically never took a breath here on earth. He did bless me with 4 step children and 4 grandkids so far. I’m so thankful that the Lord’s plans included the blessing of these kids!
I always thought I’d have a house full of biological children too, Rayna. Instead, I have one biological, two step, and three foster/adopted. Took me a long time to grieve the family I’d once dreamed of. Like you, reality looked far different than I imagined. And yet, still beautiful.
Does my life look any different than I has imagined; looking back twenty years, I would have say, yes. Twenty years ago, I was driving courier and was in a very bad place. Spending long days on the road and long nights on friends’ couches. Fast forward ten years, I was finally in a good place; married with the prospects of adopting a special needs child which didn’t work out as we had hoped. Fast foward to today my husband and I have two biological daughters, both perfect…the youngest has special needs..born with hydrocephalus, low vision, is verbally delayed and has epilesy
The co-mingling of suffering and joy, gains and losses. Thanks for sharing a piece of your story, Marilou.
What a timely post. Your story centers on your daughter’s condition and what the Father is teaching you. I am in my late 50’s and suffice it to say, I imagined a mile long driveway and loads of cash in the bank. Nada on both accounts!
However, the process has made me sensitive to many in my age group and my identity has been formed in who He is in my life and not what I don’t have. Thanks for sharing !!
It’s all about expectations, unrealized dreams and what we choose to do with both, yes? I love your outlook, Bruce. Your positivity is inspiring.
Beautiful. Thank you.
I always wanted to be a wife and mother and while I didn’t realize it, I wanted to to be a mother to girls. But, in fact, I have four precious boys. The Lord is teaching me that while it may not be what I would have chosen, it is good.
My son was born with a hole in his diaphragm. Thankful to the Lord for a successful surgery 10 days after birth. But this trauma continues to cause long-term health and behavioral issues. I am not the mom I imagined I would be. With his extreme allergy issues there are no hot chocolate treats on wintery days or buckets of halloween candy and bing eating them. But Kavin’s sickness has taught me the depth of God’s love in ways I never saw. It has taught me compassion, endurance, and sympathy. He will always be “different” but I am learning different is a gift. Because as believers we are all called to be different. Kavin never has to learn that. It is who he is—and what his sickness has made me.