March 2017 – Kelsey's Kaleidoscope

Constant

There is one constant strength that I do not speak of enough.

In many ways, he is the unsung hero of the day, every day.

He rarely seeks affirmation or praise.

He is strong, confident, and focused.

He is sensitive, thoughtful, and decisive.

Deliberate, sweet, and silly all at once.

He internalizes the world and carefully watches more than he realizes.

The world is tricky for him at times. It is tricky for me to navigate with him.

He carefully approaches tasks and meticulously works.

Except when an electronic device distracts him…

Otherwise he is solid.

He is eight and he overflowing with great.

At times I cannot thank him enough for the happiness he brings me.

The joy, the content feeling of a snuggle, or just his presence beside me.

He made me a mom.

He can never fully understand what that means to me.

We discuss how he should “enjoy every moment.”

We reflect on our days.

Life with him in it is full of promise.

He offers our family so much and asks so little.

He sits beside his sister and holds her hand.

He gently kisses her cheek when she needs it.

He gives in occasionally to appease.

He is stubborn at times to keep it real.

We are so grateful that he is him.

There is no one else in the world quite like him.

My boy.

Thank you to my one and only boy.

Luck of the Irish

“May your troubles be less

And your blessings be more.

And nothing but happiness

Come through your door” Irish Proverb

Luck of the Irish proudly shines on St. Patrick’s Day. It seems to have held much promise personally. The offer to sell my first home came in the late evening on March 17, my sister in law received her marriage proposal on March 17, and blessings seem aplenty on such a festive day.

It seemed like a perfect day to raise a glass and share a toast for my baby girl.

The day started off with happiness and many green accessories on the children. Kelsey was full of joy and laughter. She enjoyed a visit from a leprechaun at school, who even left a questionable green liquid in the potty! Her day continued with a book “switcheroo” from a friend’s desk, and she came home with a beautiful drawing and writing that stated, “I feel lucky when I have my friends and my family with me.”

Lucky with friends and family, indeed we are.

Our collective efforts over the past few weeks and the generosity of our friends and family helped us raise $4,000 on St. Paddy’s Day.

May the luck of the Irish be with you if you shared a sentiment, donation, or gathered with us Friday evening.

My family continues to be overwhelmed by the love and support of our friends and family.

As we walked to the car following the party, I must admit I was overcome with emotion. I said to my husband, “Doesn’t all of this leave you numb? It is hard to be in these moments and accept that this is our reality sometimes.”

“It isn’t real to you when you inject our child every morning? That’s when it is real for me.”

My Irish husband sure put it into perspective. We offer our sincere appreciation and thanks to those who know our reality and supported our cause.

Our village is growing, and we are extremely grateful that it is. Sláinte!

Comfort

There are few moments when you break down with strength, belief, and hope simultaneously. Today, I broke down with all three. It was quite the trifecta.

Recently, Kelsey has been curious about selecting the location for her shot. She “picks the spot” and seems to feel a bit more at ease by having a say in the process. She takes her clean, tiny finger and touches various areas. She tries to find just the right one. Unfortunately, the spots have been difficult to locate anymore as her skin texture feels rough and more difficult to pierce. The mornings have been a little bit more difficult (as one may imagine) for her to bear as a result.

Tuesday evening, I walked into Kelsey’s room to find her fast asleep, snuggling with her prayer shawl instead of her typical rotating stuffed doll. She took it upon herself to find comfort with it. It was a bit overwhelming to see. I wondered if she prayed for an easy Wednesday because it is a day she fears all week long.

So I asked her about it in the morning and wondered if she remembered taking the shawl before she fell asleep.

Her response was so matter-of-fact, “Yes. I have been praying for my needle to stop every night. I really want them to stop, Mom.”

As do I…

This Wednesday’s injections were among the most challenging we have faced in a long time. Kelsey shrieked and then she wept. Her Daddy’s arms gave little comfort as she screamed at an ear piercing level. In true Kelsey form, she wailed an apology for selecting such a “bad spot” two times in a row.

I screamed my own thoughts silently, but they were certainly not directed at my baby girl.

Tonight, I walked into Kelsey’s room to find her sleeping on top of the shawl. This time, she was not holding it. Rather, she carefully and neatly placed it over her pillow and slept soundly atop it.

The sweet image of her dreaming upon the shawl gave me a certain sense of calm, a certain renewal of belief.

I can only hope that her dreams were as serene as she appeared and that her prayers will be answered.

Join us for a St. Paddy’s Day Happy Hour on Friday, March 17 from 5-9 P.M. at Phily Sports Bar. The night will feature games, contests, and fun. Win some liquor, share a toast, and help us raise money for our cause. $35.00 will get you an open bar from 6-8, food, and festivities.

Finding Solace Together

The perfect storm of few positive changes, new marks, less sanity, more daily or double injections, little sleep, and an uncertainty of when those medications will end has not been easy on my marriage.

Sometimes, I want to be calm when I cannot. Other times, I want to cry when I cannot find tears. I often hide behind a book or try to sleep because I am out of energy and out of words. We both do this at times even though we try our best to stand together. Sometimes it is exhausting.

We try our best to communicate naturally and normally. Most days, it happens with ease.

Other days are not so good. We both find our own ways to cope and sometimes it is not in unison.

For a few weeks, it felt like we were more out of sync than ever. It was troublesome and created new stress for us. I’m sure many who have been married for a long period of time have had similar glitches over other reasons. Not us. Brendan and I have always found a way to be in sync. Our secret has been to somehow be exactly what the other needed at precisely the right time. So this was scary and strange, uncharted territory that I did not want to travel. We were our sadness instead of our solace.

Sometimes, finding time to say the words that are difficult to speak is all you need.

This weekend, we were given the gift of laughter and time together to celebrate Brendan’s birthday. Though the weather was fiercely cold, our puppy grew ill, and our restaurant choice turned out to be a comedy of errors, it was precisely what we needed.

I realize that every day moments are full of surprises for everyone. No one ever said marriage was easy.

Happily, this week, I celebrated the happiness and health of my husband who grew another year more handsome and wise. I fondly sat beside him and we laughed like we have not laughed in a long time.

It was just what I needed, and I thank the village that helped us manage to sneak away. We remembered to take time to love one another and laugh together, in unison. I am grateful for the patience and the strength of our marriage and all that it helps me accomplish day in and day out.

“I cannot go on like this”

We arrive home on the last gorgeous afternoon of February. Kelsey and I walk the dog, get the mail, and enjoy the weather for a few minutes.

When we finished homework, Kelsey hid between pillows and pouted. She was sulking in a way I have not seen in a while. Immediately, alarms flash and trigger.

“What is it Kels?” I ask shaking.

“Mom, I just cannot go on like this.”

“Like what?”

“I cannot go on with a daily needle, Mom. How long is this supposed to go on? I just want it to stop!”

With that, tears streamed down her face and mine.

Though she inherited my dramatic gene, this one was honest and raw.

I was at a loss.

I am at a loss.

Help us this St. Paddy’s Day day by joining us for a St. Paddy’s Day Happy Hour on Friday, March 17 from 5-9 P.M. at Phily Sports Bar. The night will feature games, contests, and fun. Win some liquor, share a toast, and help us raise money for our cause. $35.00 will get you an open bar, food, and festivities.