The Curse That Cannot Be Reversed
I never intended to be a parent of a special needs child. And though I had hopes of the fairy tale family where everyone breathed on their own, milestones were met with ease; I soon realized that I was just not meant to live in a perfect castle, high on a hill, while those below thought my life was something more “perfect” than it was.
Wednesday I introduced you all to an organization by the name of Hope's Seed. If you missed that post you can catch it here: https://worthyheart.squarespace.com/blog/2018/neighbors-friends-hope What I did not tell you was the back story to how Hope's Seed came about. It is a pretty powerful story, one that I am so glad I responded to the founder's request and learned more about why she started this organization. I asked Shelley, the founder, if she would like to share her story and she was so gracious and wrote her story as to why she does what she does. Take a minute and read it. You might see how blessed you are or you might see you are not alone. Whichever shoe you are wearing, you are loved!
A mother's love is instinctual, unconditional, and forever.
“Shelley and Zoe’s story”
I never intended to be a parent of a special needs child. And though I had hopes of the fairy tale family where everyone breathed on their own, milestones were met with ease; I soon realized that I was just not meant to live in a perfect castle, high on a hill, while those below thought my life was something more “perfect” than it was.
I know that this typical world that looks at the differently abled as broken may try to tell you they pity you, but I want you to know that our life is beautifully chaotic—there isn’t anything damaged about this road that we, us the special needs parents have been asked to walk.
Perhaps we are nontraditional, at times scary, and possibly sometimes, it feels as if we are alone, but there is nothing about our life that is broken.
I see now that this was the journey that some of us were meant to walk.
I would never have thought my children would grow up thinking that trauma was a routine, instead of something you read about in a magazine,
Perhaps if I can show you through my words that sometimes this special needs road isn’t easy—and that the first step is always to learn how to cope—then maybe you will know more than I did and make choices that are founded in greater awareness and courage.
I didn’t know how little I knew about life and myself when I began my journey of special needs parenting, but time did a beautiful job of teaching me.
I know that sometimes it’s hard just being confined at home, only going out to doctor appointments, because your child is too medically fragile to just go out for ice cream, There is hope, and there is always a way to learn the joy of this new normal way of life. Yes, I say new normal, because this life that you are being asked to walk will turn into a normal life, a different one then you are used to, but you're new normal.
You are enough; you are doing the best you can, I know that you still want to do more. However, you have to realize your good enough, is good enough.
When you tell me that you can't-do this it is too much, I understand, I have driven on the highway, many times with tears sliding down my cheek because I honestly thought I couldn't do this, just as much as you have. I can’t say that it is easy, I am saying you can do this.
But I do know that I was given this child who does not breathe for a reason, and you were given your differently abled child for a purpose.
For now, all I can do is love you, and give you hope to know you are not alone and you are strong enough to do this.
To say that your new normal is beautifully chaotic and messy implies that your life is hard, but it is has created flowers where there were dry and barren fields.
The reality of this journey is we don't know the outcome. Will, your child live, will your child be able to have some semblance of a normal life, will your child have someone other than you to want them, to love them, or will you be able to do it alone. The answer is I just don't know. I have found that staying in the present and dealing with the day to day and not dwelling on the what-ifs or maybes of what the future brings is the way to help to take some of the anxiety of what the future holds away. It is hard dear hearts, not to worry about what is coming around the next corner, staying grounded in the present is key to calming the storm inside of our hearts.
I know that what I say doesn’t mean anything if I am not willing to do the hard work to back it up with action. I struggle with what the future holds, when I know what the future will bring, more ICU stays, more people not understanding, more people wanting to pity the journey that we walk.
What good would I be to you if write you these love notes about finding, loving yourself, following your heart and all of the magic that this life of parenting a special needs child is if I wasn’t willing to follow my advice?
The truth is, my loves, we stumble over this road, we make mistakes, we learn lessons, and we get up the next day and do it all again.
If I hadn’t followed my heart and decided that I wanted my child not just to live, but have a life worth living to be the greatest example to both of my children, to show grace and fortitude, to advocate for them, to pave away, to tell them it doesn't matter if you can't breathe on your own, cannot talk, walk, eat by mouth, you were put on this earth to teach us what life is really about, then I also wouldn’t be the mother that they truly needed me to be.
Without this road that I have been asked to walk, I wouldn’t be the type of women who would have amazing children who were differently able that will one day change this world.
My goal from the start has been to raise amazing children; this did not change because one of them was born not knowing how to breathe. I never intended to keep watch over them teaching them, their ABCs while they learn how to best blend into society so that one day they might get a mortgage, and an IRA and find themselves settled down but empty.
I intended for them to grow up to be people with soul and depth.
People who have vision and ambition who know they will have to work through blood and sweat to get the life they want and deserve, breathing on their own or not.
People who follow their hearts no matter where it leads and who possess the courage to help others who are differently abled to do the same.
I wanted my children to be game-changers and status quo destroyers. This is what our special children were born to do. No, they might not be in the boardroom, behind a desk or political office they were born for greater things.
I first had to become this type of woman because of walking this journey.
So, no my darlings we do not have broken children, it was us who were broken before we had them and were able to learn what truly mattered.
Brokenness begets gratitude for the little things, the first step of a legally blind child, the first food a tube fed child eats by mouth, the first word a trached child forms, the first day you drive alone with your vent dependent child, all these things that unbroken parents never think of. You just feel the rush of gratitude for the ordinary, the new normal, the only normal you now experience. It makes you who you are, strong, yet bendable, because you know the wind will blow hard again, but you bounce back. Every time.
My story like all good stories is a story of hope, failure, brokenness, elation, beauty, and life.
My darling Zoe was born just like every other perfect child. She came out kicking and screaming, the nurses beamed, the father overjoyed, and I laid on my birthing bed glistening with the dew of a hard-won victory.
Even Shakespeare could not have foreshadowed the events that began to unravel like a ball of un-kept yarn as soon as Zoe's head was placed in the nursery.
You always hear the greatest stories of milky laced trauma that start with a dramatic birth but alas Zoe had a perfect peaceful birth, yet like all good suspense novels, it is not what is obvious that stirs the plot but the silent nuances that sneak in like a thief in the night.
Zoe just simply stopped breathing, there was no struggle she just closed her perfectly made doe eyes pursed out her bow like lips, went to sleep in the nursery of the hospital and stopped breathing.
There was no fanfare, no blue to tinge her lips, not even a tear.
The nurse noticed something off and went to pick her up, and Zoe took a deep cleansing breath opened her eyes yawned, stretched and wiggled like any other newborn. The nurse shook her head laid Zoe back down and walked off. This seemed to be the beat of Scottish tattoo Zoe played.
Stop breathing, the nurse picks her up Zoe takes a breath, and the snowflake pattern begins a new.
The doctors moved her up to the Neonatal Intensive Care Unit all confused why this perfectly perfect newborn would stop breathing with not even a struggle.
Zoe played this game of cat and mouse for 6 months, 6 months of Zoe not breathing when she slept, a tube was placed in the small of her neck so a machine could whirl and whistle air into Zoe's while we all held our breath watching and waiting for Zoe to take a breath on her own. For six months we waited winter turned into spring and spring into summer.
At last the doctors had found a name for why Zoe would not breathe, like all good fairy tales one needs just a simple curse to make the story come to completion.
A curse is what she had, to be precise Zoe had " Ondine's Curse" the curse of forgetting to breathe.
Hearing words that your daughter has a curse upon her, and you not knowing what that curse could be, you sit there in that ICU holding your cursed baby and weaved steadily within her, and I a resolve to weave a web of a life with little fear and only beautiful joy. The doctors gave us no hope; the nurses gave me a pearl garland to wind her head, to lay her on a velvety bed and let her fly back to heaven like a fairy princess. The curse can never be reversed but I did know you could live with a curse I had read about all kinds of fairy tales when I was small. You should always believe in fairy tales not because curses can be reversed, but because curses can turn your scars into threads of silvery beauty. The Doctors gave me one year with Zoe, Zoe has given me 17 years.
Shelley
To learn more about Shelley's organization go to www.hopesseed.com
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Every mom could use an Apple Watch
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Have you gotten your mom that special something for mother's day yet? If not click the link above! You might find something she will love!
Neighbors, Friends, and Hope
Have you ever heard the saying, "A bad neighbor is a misfortune, as much as a good one is a great blessing?"
Have you ever heard the saying, "A bad neighbor is a misfortune, as much as a good one is a great blessing?" It is so true! I am happy to report I have amazing neighbors and our little block is one of pure love and joy. Once a month the moms on my block all get together and do a mom's night. Every once in a while we will change it up and include the family, but for the most part it is about 12 women and we get together and eat, talk, and just share life. It has been so good for our souls and so good for our street. Twelve or so mom's getting together and finding out that we are all the same, but yet so different. Some work, some do not. Some exercise, some do not. Some like wine, some just drink water. Some have multiple kids, some just have one. Some have kids out of colleges, while others still have kids in the womb- the list goes on and on of differences, but what we do have in common are the same fears and dreams for our families and we all understand the joy of doing for others.
Last month after our last get together I started putting ideas out there of what we could do for April. Oddly about the same time, I read a post on the book of face (facebook) from a lady who was collecting bags for mom's in the hospital on Mom's day with their sick kiddos:
Many mothers are going to spend their first and last mothers day sitting at the bedside of their children who are medically fragile and terminally ill.
Help Hope's Seed to bring mothers day to these mother's at children medical center Dallas.
We need gift bags full of items like lotion, toothbrush, dry shampoo, chapstick, pens, notepads, anything at all that a mom would need while in the hospital with their child. Let's all bring some sunshine into these mothers lives on Mothers day this year.
I will PPU all you have to do is get your friends together, church groups, girls scouts, mothers day out or just on your own. I will pick up and deliver to children's medical center on your behalf.
Deadline for PPU is May 10th
I had never heard of Hope's Seed, but I had done enough work with my "Cancer Mom's" in the past to know that this was an amazing idea. I immediately sent out the text to the group asking if they would like to do this. You guys, my friends/neighbors went above and beyond! EVERYONE jumped in and everyone contributed; even if they could not be there the night I had chosen to build the gift bags. My amazing sister in-law, Erin, donated gift bags, ribbon, and adorable stickers from her stationary business at: https://www.etsy.com/shop/erinshelby
I made my neighbor, Amy's tortilla soup! If you missed that post you can find the recipe here: https://worthyheart.com/blog/2018/4/28/amys-tortilla-soup-modified-for-this-amys-tastebuds Some of the mom's bought other nibbles and wine and together we built 50 adorable bags of love. We had fellowship, we had laughs, we had food, we had wine, and we all counted our blessings because God willing we will be home on mother's day with our healthy kiddos. It was such a great night, so easy, and we all felt so good inside! We were all happy and full! Full of love, full of joy, and full of hope for these mommies!
Grandpa joined in on the food and fellowship! #luckyguy
“I began learning long ago that those who are the happiest are those who do the most for others.”
We enjoyed this evening so much that one of the mom's came up with the idea of "Cause a Quarter"! I love that! Once a quarter Milton Mama's will be giving back! How fun is that and how blessed am I to have such amazing neighbors! Not only neighbors, but friends! Each one of these ladies has a story and beautiful story and each one of these ladies has a heart a beautiful heart! To top it off each one of these ladies I can personally call my friend!
“A sweet friendship refreshes the soul”
So as Mother's Day approaches I want to take a moment to thank my neighbors/friends for being who they are! I want to tell each one of them you are Amazing! You are Strong! You are Loving! You are Happy! You are Selfless! You are Graceful! And you are Special! Happy Mother's Day to 12 amazing ladies and Happy Mother's day to all Moms! Because after all, Mom's are like buttons, they hold everything together!
If you want to learn more about Hope's Seed go to: http://hopesseed.com/ and later this week, Shelley, the founder of Hope's Seed will be sharing her story as to why she started Hope's Seed. Stay tuned because it is a story you will not want to miss!
Bags of love produced by some amazing women! Women I call my friends! #luckygirl
Until next time!
XO,
Amy
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Mother's day is fast approaching! Here are some beauty gift ideas!
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Don't forget your moms! Click the link above and find her something to make her day EXTRA special!