Friday, February 24, 2012

A New Version of Motherhood

I have asked some of my friends to share a little about their worlds with you all.  Today's post was written by my friend, Cheryl Romanoski, who is mom to 3-year-old Louie and 8-year-old Katrina:

Cheryl, Katrina and Louie

I have always been a fan of Oprah Magazine's “This much I know column”. Guest writers talk about their a-ha moment in life. To me, the past few years have been full of a-ha moments, full of oh no moments and full of Thank God moments. Our little boy Louie was born with an underdeveloped brain, collapsing spine and no reflexes. He could not suck, therefore he could not feed on his own. He slept. He slept. And he slept. They told us he was blind and deaf and was having subclinical seizures constantly. 

What was this new version of motherhood? My daughter was 5 when our Louie was born. When Katrina was a baby, we had a huge scare. We found out in my 38th week of pregnancy she had an absent corpus collosum. Prognosis could be normal or could be a child that never walked or talked. So we were told—“Wait and see”. She starting meeting milestones right away and at age three was discharged from neurology as a healthy little girl. Then Louie came along: Wait and see. I waited. He slept. I hugged him, he couldn’t hug back. I smiled at him and cooed. He didn’t make a sound. He slept. We just heard more wait and sees from doctors. 

While he slept, we tried medicines. Medicines that had potentially lethal side effects. While he slept, he got a tracheostomy and went on a ventilator so his lungs could stay healthy and he could grow. While he slept, a doctor performed lifesaving operations on him to stabilize his spine.

But still a piece was missing. A piece that made me guilty and sad. Had I neglected my son?  While getting him the best care, he still couldn’t bond to me. Was he there? Did he know how much I wanted to love him? And yet it wasn’t the same experience as I had with my crucial moments with my daughter. Did I love him enough?

Handsome Louie

During Louie’s sickest days early this year, when he was near death, with what we would find to be adrenal failure, I cried and held him tight in “our” rocking chair. I prayed to God and any angels that he might have to please take care of us. I sobbed and begged to God. Just then I felt hand on my shoulders gently rocking me from behind. An unbelievable warmth. I didn’t want my husband to see my tears and couldn’t speak but was grateful to have him there. But it was not him. He was asleep in the other room. He had a similar experience later that night before I could even tell him about mine. He woke up from watching the hockey game and saw a figure that looked like his father above him. I think on that day, I woke up. I always believed in God so much, but that Louie was so special and pure that I (truly) believe angels were sent to touch and comfort us in our biggest time of need was our wake up moment.

Louie is still sick. He still has problems. But sometime around his third birthday he began tracking…noticing sounds. A few months ago at the age of three and a half he had his first real big laugh. He started to put together some sounds. He is starting to be able to play on the ipad little games and has favorite toys. He is the happiest, purest thing I ever met. I read Kate’s post yesterday, how she feels similarly about Anabelle. How we are so lucky on earth to be touch by little angels every day. And that each sound, word or smile they give us is a piece of wisdom that is something so much more perfect that any medical milestone chart could ever describe.

Louie and big sister, Katrina

Wednesday, February 22, 2012

Anabelle's Reach

We have noticed from the very beginning the overwhelming attraction Anabelle has to everyone who meets her.  However, with the occurrence of some recent events that put Anabelle in a more public spotlight, we have found that this pull does not require a face-to-face meeting to find yourself under her spell.

In December, some friends held a holiday gift sale benefit for Anabelle.  Countless attendees who I had never met came up to me and said they were there because they saw the picture of Anabelle in the paper, or on the fliers, and were touched by her story.  One of the women was even carrying the photo from the newspaper around with her!

When Anabelle's struggle with the state Medicaid office was published in the Philadelphia Inquirer's series on Medicaid issues, we met many new friends in the area, many of whom had special needs kids themselves, but some of whom simply fell in love with the sissies.  While it was a little surprising to have all of these people contacting us, I decided pretty quickly that it was not my place to stand in the way of Anabelle spreading her own joy to the world.  If she has found a way for her little light to shine, I can only be the lightkeeper.  The more people who hold her in their hearts, the greater the blessing to her, to our family, and to her friends.  And so, when one of our new friends (who is not a special needs parent, himself) felt moved to send the girls a gift, we were overjoyed to receive it:

Oh, that's right: it's a super big fish pillow!  And, I might add, that Elyse is currently asleep on it right now!

It came with friends!

Even "Teddy" had to get in on the action

By the way, these adorable friends were made by artist Jelene Morris, you can see her work here if you want to get some of your own:

Tuesday, February 14, 2012

What is love?

One of the most difficult things about having a child who cannot communicate is that you can never be certain what they are feeling.  When are they happy?  When are they sad?  Do they get angry?  The one emotion that I think I can safely say any special needs parent would feel confident in attributing to their child, no matter what the level of ability, is LOVE.  Even if your child will never function beyond a newborn level (as is the case with Anabelle), the ability to love is an ingrained instinct that cannot be denied.

“Before you were conceived I wanted you. Before you were born I loved you. Before you were here an hour I would die for you.” – Hawkins

The same passion that binds a new parent to their child works the other way, as well.  Anabelle spends almost as much time with her day nurse as she does with me, yet she still turns her head and smiles wide when she hears me start to talk to her.  She is my child and I am her mother, and it is nothing she has to learn.  She extends that love to everyone and everything around her that makes her happy.  It is nothing but pure, good, real LOVE, and it is why it is so easy for EVERYONE to love her in return...

Listening to the baby doll sing

Sissy Love

Late night with Mommy

Sissy + beanbag chair = Heaven for Anabelle

Family sing-a-long

I love my glowworm!

V-Day love

One word frees us of all the weight and pain of life. That word is love. —