What a Child Wishes For When They Have a Sick Parent

What a child wishes for when they have a sick parent

When I was a little girl, I looked up at the sky every night to search for the brightest star. When I found it, I closed my eyes tight and made the same wish in my head, “Find a cure for my mom.”

I vividly remember repeating it as fast as I could when there was a shooting star, as I believed they had more power in granting wishes.

I never wished for a Barbie doll, a pet or a trip to Disneyland. I just wanted Behcet’s Disease to leave my mom’s body and our family.

This rare, incurable, autoimmune illness had incredible power over us and I wanted to destroy it with my wishful thinking.

As you can guess, it never came true.

However, other unexpected wishes did.

Resiliency, Empathy and Hope.

These aren’t your typical wishes, but they serve a purpose in my life. They guided me through my childhood into adulthood, viewing things with a different perspective.

I remember how angry I would get when I heard peers making fun of someone due to their appearance or struggle with a task. I could feel the pain from the insults and I would speak up. They needed to be aware of an invisible disease.

I wanted people to feel included and accepted as they are.

Often times, I played a care-taking role, retrieving ice packs, medication and a thermometer for my mom. The flare-ups were harsh and restricted her to a dark bedroom while waiting in agony for the pain to diminish.

Those were nights that I searched for a shooting star.

I became very comfortable in a hospital setting and I loved to rummage through their storage cabinets and take whatever I was allowed to, ID bracelets, basins, gauze, tape and of course a gown. I would bring it home and play doctor, foreshadow to my career.

These unexpected wishes have fueled my passion in working with others. I understand how an illness impacts the whole family, as it is never an individualized disease. I know there are always setbacks with an additional diagnosis, complications, and waiting for an FDA approved treatment. I know that people living with chronic illness don’t want to have a pity party or talk about their health, they just want to live a normal life, even though their normal is a bit different. I have a genuine admiration for my mom and other’s that struggle with life’s challenges and still find the courage to push forward.

I’m now 35 and still making wishes.

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Drowning in Grief

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It has been an awful week. Both my beloved grandparents died on Saturday just hours apart from each other. The loss has devastated our family and their community.

We were preparing for my grandpa’s passing the last few weeks and I even took a trip to say my final goodbyes in person. I spent a few days with my family helping them get through the anticipatory grief and creating legacy building activities. We made several canvases with his handprints, so that everyone could have a little piece of him in their home. We also made a beautiful clay mold of both my grandparent’s hands side by side. I thought this would be something my grandma could always treasure, now the family is.

Drowning in Grief

As my grandpa’s condition worsened and my grandma suddenly became very ill, I had to say my final goodbyes through FaceTime. It was incredibly difficult to compose my thoughts and actually speak on them, as I knew that by saying it, I was accepting the fact that they would no longer be with us.

It was one the hardest things that I have ever faced, but I did it.

The grief struck instantly and I was drowning in the sea of emotions.

I was alone in my home and wailing uncontrollably. I frantically called my husband and close friends to help me get through this critical time.

They were my life boats.

As the next several days have passed, I found myself still stuck in the ocean waters. The waves roll in unexpectedly and I am flooded with memories and emotions. Sometimes the tide is low and I feel incredibly isolated and numb or I am caught in a rip current bringing me back to the depths of the ocean with feelings of pain, anger and guilt.

I am incredibly grateful for my friends, family and colleagues. They have been throwing me life preservers to help me feel safe in such a critical time.

Thank you all for the phone calls, text messages, cards and emails.

As a person who usually takes the lead to help others through grief, this is the first time I am on both the giving and receiving end. It is a bizarre experience.

I have found strength knowing that my skills are helping my family to cope and also understand one another’s grief experience. We are becoming more united and will face this devastation together as a strong force.

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Butterflies, Hope and My Rainbow Baby

It has been nearly four years since I had my miscarriages. It was such a difficult point in my life and I can remember the feelings of enormous pain, loss and guilt that it brought me. I recently found this photo and it explains exactly how I felt.

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I tried to stay optimistic about having another child and a sibling for my son. I put all my energy into parenting, taking care of myself and hanging on for the roller coaster ride of grief.

Some people tried to comfort me by saying, “at least it happened in the first trimester” or “it would have been much harder if you were further along.”

I understood where they were coming from, but what they didn’t realize, was the magnitude of loss was still enormous for me. This was a pregnancy. I did have a little life growing inside of me, even for a short, 5, 6 1/2 and 8 weeks.

I grieved for each loss.

I remember looking around and trying to have some connection to my losses. The only tangible items I had were a baby book and positive pregnancy stick.

When I would take my son out, I noticed many white butterflies always fluttering by. I began to tell him, “Those are mommy’s butterflies. They are always following me.”

I feel like those butterflies represented my losses. They always put a smile on my face when I saw them and they began to give me hope.

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After the third consecutive miscarriage, I became pregnant with my son, Blake. He was my rainbow baby.

He has brought so much love to our family. I feel that our family unit is complete now. I have my two adoring sons, loving husband and protective french bulldog.

What more could I ask for?

Nothing. I am good. I don’t need a baby girl. I don’t need to try for number three. Actually, I already had number three and four and five.

There is a very special bond that Blake and I have. He is known as a “mama’s boy”. In fact I joke that he is still attached to the invisible umbilical cord.

He is constantly following me around, holding my hand, sitting on my lap, hugging and kissing on me, while saying “Oh, mommy!” He is just special.

Maybe he knows that he is a rainbow baby. He has a special bond with each of us and has filled the void.

As I reflect on where we were four years ago and where we are today, it is just amazing. I feel so lucky to be part of this family.

I still see my butterflies, but now I have two little boys pointing them out.

RainbowBaby

I knew from being a child life specialist, that support and healthy coping strategies would help my husband and I get through this. If you find yourself in a similar situation, reach out for help, it can make a huge difference.

Miscarriage is common, but still incredibly solitary

Honoring our lost loved ones on Mother’s Day