To the mom seeking a diagnosis for her child

You stand on the edge of an ocean of uncertainty. The hot sun of anxiety and fear beating down on you. The cold water is refreshing but a shock to your system. As you look out at the water you can’t be sure if the next wave coming in will wash over you like a breath of fresh air, a welcomed relief from the heat or will it knock you down? Will it pull you under and break you? Or just toss you around and spit you back out as a stronger more confident and knowledgeable swimmer? Will it wash up the shore to consume your child? Or will it be just enough to alert help and send reinforcements?

Of course, the type of diagnosis you are seeking will play a roll in the size and intensity of the wave. But no matter what is happening with your child, the unknown of the wave is there. My son has taught me what a strong swimmer I am. I’m a fighter. An advocate. We have had scary diagnoses placed on the table as possibilities. We have seen many doctors and specialists. I’ve held him through countless blood draws, x-rays and testing. So many unknowns remain for our little man and there is sure to be more testing in his future.

I remember the day he received his FPIES (food protein-induced enterocolitis syndrome) diagnosis. I will never forget the details right down to what I was wearing. At first, it was refreshing. Thank God I wasn’t crazy! His bizarre symptoms had an explanation! We finally have a label. I could research and plan. Then the wave pulled me under. Sucked into the pits of Google researching and researching; driving myself crazy to try to make myself the new FPIES expert. Finally, I was spat out. My head broke the surface and I gasped for air. One step led to another and then onto another, and soon I was able to find specialists for his rare disease. The pieces came together. I was able to better formulate a plan for moving forward and take peace in the fact that the scarier diagnoses had been ruled out for the time being.

Not everything goes according to plan. Unfortunately, this process is a cycle. My own demons of anxiety and postpartum depression ally themselves with normal mom fear and create a terrifying all-consuming monster. Each time a new diagnosis is brought up as a potential culprit I have to fight not to be consumed by the undercurrent. I do my best to swim parallel to the shore….toeing the fine line of being prepared for anything and paranoid of everything.  I’m sure you know how researching medical conditions can be online, try mixing in some medical anomalies and it can feel like being sucked into the undertow.

Sound familiar momma? Just know this: it will be OKAY.

YOU know your child best.

YOU will always be their best advocate.

ALWAYS trust your gut.

Document everything and don’t stop until you have answers. Feeling crazy? Wondering if you are good enough? I can tell you, if you are worried about being good enough and capable enough to manage your child’s care, then you are already doing an amazing job.

Keep your head above that water. Take care of yourself even when it feels like there is no time left in the day. But most of all, enjoy your child. Whatever their diagnosis is, don’t let it consume them. Don’t let it become their identity. It may be a large part of their life but it is not WHO they are. This is harder than it seems when you are constantly documenting, scheduling and traveling to specialists. But momma…

Notice their unique personality.

Notice their talents, strengths, fears and what makes them let out those irresistible belly laughs.

Notice THEM.

When the world wants that diagnosis to put them in a box and define them, fight to make the world see them for who they are as the incredible tiny human you know them to be.

YOU are their advocate.

YOU are their life jacket, warrior, peace, strength and joy all rolled into one rock-star mom.

You can’t support them if you don’t support you.

Ask for help.

VENT.

Find your tribe, your village, your people and lean on them. Online support groups can be absolutely incredible!

VENT.

VENT some more.

You will get through this wave. There may be more coming but they won’t pull you under. You’ve got this!

To follow our little man’s story check out his Facebook page https://www.facebook.com/Living-La-Vida-Lucca-2369903016563479/

I don’t want a fighter.

I don’t want a fighter. 

I don’t want a warrior. 

I don’t want him to be strong. 

I don’t want him to be brave. 

I don’t want him to be tough. 

I just want him to be little. 

Despite the best of intentions, and my own FREQUENT use of these words…I don’t want my medically fragile child described as any of them. 

I just want him to be little, and to enjoy that littleness. 

I want him to grow up with the innocence that comes from a healthy, carefree, unrestricted childhood. 

I don’t want that childhood spent inside the walls of hospitals, doctors offices, and therapies. 

I don’t want that childhood spent getting tests done, blood drawn and IVs placed. 

I don’t want his memory of my arms to be as restraints for testing and needles. A restraint he tries desperately to escape from. 

I want him to remember the comfort and love he felt when I held him. I want him to seek out my arms to embrace him and take the pain and fears away. I want to be his safe place. 

I want him to laugh and run at playgroup without fear of foods or germs that will land him in the hospital.

I want to enjoy the highs without feeling like the lows are coming with fury to knock us off course. 

I want to enjoy each season as it comes without anxiously awaiting to see what the next one will bring. 

Yes, I know.

He IS tough. He IS a little warrior. He IS brave. I know that I describe him as such…but I’ve come to hate these words. 

Maybe it’s the week spent in and out of hospitals watching our sweet boy so sick that he couldn’t hold his head up. Watching him so drained of strength that he could no longer fight the blood draws and IVs. Maybe it’s this new perspective or maybe it’s bitterness. 

But when I heard these adjectives by well meaning loved ones and nurses, I started to cringe. Each time I began to feel like I was being punched in the gut by an unseen enemy. 

You see, when we saw those two lines come up on that test, when we saw blue at our gender reveal, when we heard that first cry…this was not the life we envisioned. 

When we describe him as tough or a warrior or a fighter…we are feeding into letting his diagnosis define him. I’m making a vow now to change that. 

Instead, I want the focus to be on just how funny, silly, bright, caring, mischievous, loving, curious, outgoing, determined, social, beautiful, talented, cautious, sweet, empathetic, strong willed, sensitive, happy, persistent, observant and absolutely perfect he is. 

And if we must use those words, let it be just one, in the long list of other adjectives we use.

Follow our amazing little man’s journey on his Facebook page: https://www.facebook.com/Living-La-Vida-Lucca-2369903016563479/

Cracks Filled With Gold

I recently came across a Japanese tradition in which cracks in broken pottery are filled with gold to repair them. Instead of tossing aside broken dishes, they are celebrated for their unique cracks, a representation of their individual journeys. Instead of discarding them for being different, they are embraced and seen as beautiful. Wouldn’t the world be a much better place if we took this view with our neighbors? Not just those who were adopted, but all of our children. Wouldn’t the world be a better place if they were accepted, flaws and all? If they were appreciated for their differences and their journeys.

Over the past seven years of raising our oldest daughter, we have worked incredibly hard to help her celebrate her differences and embrace the uniqueness of her adoption. The glistening gold that fills those cracks is made up of hours of research and thousands of dollars on specialty therapists to help our daughter process the loss and joy that is her story.

While we celebrate the fact that we found our missing piece, and we try our hardest to instill that mentality in our daughter, the immense loss of losing her birth family isn’t lost on us. Despite being only 10 years old she has had to learn how to come to peace with inner turmoil and conflicting emotions that even I, as an adult, have difficulty processing. She has cried on my lap countless times as she tells me she wishes her birth mom “didn’t have a sad heart” and could keep her. How she wishes she didn’t have to be adopted. In those moments my heart aches for her. As much as I couldn’t fathom a world where she isn’t part of our family, I wish she didn’t have to experience any of the trauma from her past.

Each time she tells me these things, in a complete state of devastation and grief, she feels bad. She feels like she is hurting me, betraying me. She apologizes and says she doesn’t want to go back to her birth family and she wants to stay with us and she loves us and we are her family. Those cracks run deep, almost causing her to shatter into a million pieces.

How could she possibly feel all of these opposing emotions? We tell her that all of these feelings are okay. We tell her not to apologize, we are here to talk openly about everything. We put on a brave face and rock her, soothe her, comfort her, reassure her….and then when we get a few seconds to ourselves, we fall apart.

We grieve for the life she lost.

We grieve for the scars abandonment has left on her.

We grieve for her having to face a world where “different” isn’t always seen as equal.

We grieve for the questions that only grow as she matures.

We grieve for the hurt in her eyes as she watches others say how much her younger siblings look alike.

We grieve as she searches desperately to find some piece of herself in her father and me.

We grieve that she has had to experience cracks at all, and lost some childhood innocence in the process.

Despite all of the turmoil going on in her head, she manages to show pride in her differences. She shows strength. She shows immense empathy. She shows compassion for others. She shows maturity beyond her years, after all, she has had to conquer mature topics at such a young age. Despite how well she seems to grasp her history, with each stage of mental development she needs to reprocess her story on a new, deeper level.

Recently, this has meant identifying with songs that focus on being a “misfit” or “outcast”. She says that the songs describe her because she is the one who is different from the family. With her long golden hair and bright blue eyes, her features don’t match the rest of our family’s brown eyes and dark hair. We focus on the similarities between her and her siblings, how much she has a fire in her like her father. We focus on how advanced she is in math and science just like her dad and how she has the same taste in music as me. She says that she is Panamanian, French Canadian and Italian just like her siblings are. She takes pride in family history, culture, food, music and traditions.

Then she heads to school.

She is told that she isn’t those nationalities because she doesn’t share our DNA.

She is told that we aren’t her “real parents” and her siblings aren’t her “real siblings”.

She is told that she wasn’t wanted by her birth family and that is why we took her.

She is told that she doesn’t belong.

You see, I don’t think that *most* of these kids are trying to be hurtful. I don’t expect them to understand. I think, that they have been taught that so much of who they are is based on DNA, that DNA and blood defines them and their family. I don’t think most of their parents would encourage this thought process if they knew the potential it had to hurt others like my sweet girl. However, most families don’t realize the important conversations they should be having with their kids that they are missing.

Many families don’t teach their kids that families come in all different types. From two dads or moms. Single parents. Living with grandparents. Adoption. Foster Care. Divorced. Separated. Half siblings. Full siblings. Or siblings that share no blood at all. Families come in infinite configurations and it is time to have those open conversations.

Let’s teach our children that not every child grows in their mommy’s bellies. Some grow in their mommy’s hearts.

Let’s teach our children that different does not mean less.

Let’s teach our children that not understanding a family unit does not mean they should look down on it.

Let’s teach our children that adopted children were wanted. They were chosen. They were the missing piece a family was desperately searching for.

Let’s teach our children that adopted children are with their “real family”. They may have a birth family, but the family who loves them, provides for them, fights for them, cheers for them every day…that is their REAL family.

Let’s teach our children that not every adopted family looks the same. There are open adoptions on great terms, closed adoptions and so many more. No single type is better than others and all of them present unique benefits and challenges.

Let’s teach our children that it is okay to ask questions, but take no for an answer if the subject is too personal. I know our girl LOVES educating others on adoption. She loves sharing how unique and special it is that her family is different. However, she doesn’t like to go into details of why her situation is the way it is. She doesn’t like to share the trauma and that is why I won’t share those details here either; it is her story to tell.

She will gladly explain that her siblings are her “real siblings”. They fight with and for each other. They love each other deeply. They play together and know every little detail about each other. They share cherished memories of childhood.

She will explain how we are her “real parents”. We love her unconditionally. We cheer her on. We are always honest. We discipline her. We give her chores. We provide financially, physically and emotionally.

She will explain how yes, she doesn’t share our nationalities by blood but she shares the love of the culture. She listens to stories from our family histories, her family histories. She dances to Spanish music with her dad. She is learning the family meatball and sauce recipe from me that has been passed down for generations. She knows our traditions like our Sicilian seafood feast on Christmas Eve. She appreciates the languages, the foods, the music, the history. She is as much a muddled mix of cultures as our other children.

When I look at her face, I don’t see myself as a child. I don’t see dark hair and dark eyes, but I see so much more. I see her soul. I see the strength, determination, intelligence, curiosity, passion, fire, empathy, compassion, morals, sass, work ethic, sense of humor, strong will, thick-hardheadedness, and quick wit that is very much a mixture of her father and me.

So I beg you, have these conversations with your children. I can promise you they won’t be as difficult as you may think. In fact, I can promise you they will be far easier than it is for parents like me, who must attempt to put the pieces back together after their child has been shattered by hurtful comments. As we attempt to use gold to mend their broken hearts and help them see their unique beauty.

We seek to raise our daughter with peace and acceptance from her past, and my biggest wish for her is that she is able to hold onto that when the world tries to take it away. I pray that she is able to remember each and every crack and appreciate the beauty and journey that they represent.

“Not flesh of my flesh, nor bone of my bone, but still miraculously my own. Never forget for a single minute, you didn’t grow under my heart but in it.”
– Fleur Conkling Heyliger

Mama, You Are Enough.

As I step into the sunshine in what feels like forever I can finally feel the rays on my face again.

I can hear the birds again.

I can feel the wind again.

The world has color back with blue skies and green grass. I feel as if I took off the glasses that had been clouding my life and mind for the past year.

Under the dark cloud of postpartum depression I lost all sense of self.

All motivation.

All joy.

What a lonely and terrifying place to be. Creeping in slowly like a lone rain cloud on a sunny day, I didn’t see it coming and barely noticed it had arrived. I couldn’t tell you when it hit me, but I can certainly tell you when I first felt it lifting.

When I noticed I was singing along to the radio again.

Having dance parties in the kitchen again.

Enjoying walks with my Oslings on a sunny day again.

I remember feeling hopeless. With depression came no motivation or energy.

No motivation to make a change.

No energy to keep up with the house or kids.

No energy to move from the couch most days.

I still have those days, but I have more good days in between; more good moments.

The cycle sucked me in like a tornado. Spinning me around and consuming every ounce of my being until I didn’t know how to escape. Every insecurity beating into me like debris in a storm.

The smallest tasks felt impossible. As the dishes piled up and the laundry mountain grew taller the tasks seemed even more daunting.

Each day that passed without checking a single item off my to do list caused me to spiral more. If I couldn’t even run the laundry how was I good enough?

My family deserved so much better.

My kids deserved better.

My husband deserved better.

The intrusive thoughts grew so loud I couldn’t hear reason anymore; and then, with the help and support of my husband and family I sought treatment.

It wasn’t quick.

It wasn’t easy.

It wasn’t a straight path to emotional well being. But with the support of my loved ones, an understanding and capable therapist, and yes…even medication, I finally have the color back in my life.

Some days aren’t great.

Some days are tough.

Some days I feel myself slipping and sliding and getting sucked right back into that tornado as the rain clouds roll in; but I’m so much better.

I’m stronger.

I’m finding myself.

In my writing and in sharing our stories and struggles openly I’m finding peace, strength and confidence.

So mama, if you feel those rain clouds creeping in, if you feel that tornado spinning and sneaking closer, remember:

You are worthy.

You are strong.

You are loved.

You have irreplaceable value.

Treat yourself the way you would treat your best friend, your sister, your daughter, your niece. Give yourself grace and see your worth.

It will pass., the worst storms always do.

There will be sunshine again.

You will hear the birds singing again.

You will sing along to your favorite songs again.

Get the help you deserve, surround yourself with a village that feeds your soul and always remember….

YOU ARE ENOUGH.

May is maternal mental health month. Check on the Mamas in your life and start conversations about anxiety and depression.

The first step is reaching out to your doctor and having an honest conversation. They can help you to seek appropriate services and support promptly.

If you think you or someone you love is suffering here are some other resources available:

The Postpartum Health Alliance offers information on PPD as well as a warm line and crisis hotline: https://postpartumhealthalliance.org/?fbclid=IwAR2uMvUCL0wSGhUs-IL2K7_ZjNh2VpkkIKJ1Oa9M2H5wAkijc1kinGrYLW8

Postpartum Support International offers text and phone call support as well as help finding local resources and PPD information: https://www.postpartum.net/?fbclid=IwAR31-kwY4I99ufgErrz2qdN5RE-NEla8T-vOIGRD07wnCnEoMRxklM-l1yU