Tag Archive | chromosomal abnormality

It’s Simple… “Love”

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It is hard to believe that Sephora would have been 1 1/2 years old already.  As I sit and write today, I’m currently watching Miles play with his toys on the floor and crawl around the room to pull himself up using anything he can hold onto.  It makes me wonder what Sephora and Miles would be doing together.  Would she nicely share all of her toys?  Would she be chasing the dog around the house?  Would I be chasing her while she chases the dog around the house?  I’d imagine she’d be dressed in something frilly with little curly pigtails in her hair.

The holiday season wasn’t as challenging as I’d imagined it would have been.  We had our moments when we wished she were here to open presents, to giggle with excitement, and to make holiday crafts together.  We spent the days as a family, enjoying our time while playing with our little rainbow baby boy.  …and then I’d heard the ignorant comment through the grape vine, that someone couldn’t believe we were still talking about her.  How could we still be grieving for her?  Why haven’t they moved on?  My answer is simple.  Losing a child is completely different than losing a parent or other family member.  It is unnatural for any mammal to bury a baby.  Elephants, whales, monkeys, chimpanzees, dolphins…they all grieve for babies that have passed away.  We all grieve for as long as we live.  You should thank God that you’ve never had to experience as loss like ours.  Hold your kids a little tighter tonight knowing they are safe in your arms and not in the ground or in a tiny urn on the shelf.

Some days I still wonder why our baby had to be the one to leave earth after 4 1/2 hours of life to be made an angel in Heaven.  Why did she have to have Trisomy 13, a chromosomal abnormality that 1:16,000 babies get?  She looked so perfect on the outside.  Why did every cell inside her body have to be “abnormal?”  For what purpose was she given to us, only to say goodbye so soon after her birth?  The only reason I have come up with…she was made with love and born to show the world that something beautiful and perfect could be born and pass on into a better life.  She taught us the real meaning of “love.”  All Sephora ever knew was love.  She knew love from her family, friends, and people who never met her.  I had no problem telling anyone who asked when her due date was, that she wasn’t going to live very long.  The amount of belly touching, with permission, was phenomenal!  People asked us why we chose to carry and give birth to a baby who likely wouldn’t survive.  My answer…She was my daughter.  She was my first born.  I sang to her every day.  We worked out together.  I loved her.

It’s Simple…  “Love.”

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Amazing Grace

Our Beautiful Angel, Sephora Angeline, has changed our lives as well as the lives of many others through her very short life’s story.  At the middle of her story, when we received the Trisomy 13 diagnosis, our world was turned upside down.  We cried.  We screamed.  I was a complete wreck and didn’t leave the house that entire weekend except to go to church.  Sephora has helped to stretch me.  I feel like I have more compassion for other people around me.  My patience could still use some work, however.

When we went to see “The Centurion The Musical,” a bagpiper played Amazing Grace in Act 2.  I remember sitting in my seat listening to the music and singing the words in my head.  It was there, that the comprehension and understanding of “Amazing Grace” hit me.  Up until that day, I’d never tried to figure out its meaning.  Finally, I understand.  Amazing Grace, in it’s very simple form, is about more than just grace.

Amazing Grace, how sweet the sound that saved a wretch like me.  I once was lost, but now I’m found.  Was blind but now I see.  –Who am I, that this verse brings me back to God’s eternal upper story versus our human lower story we have been examining at our church recently.  How does my husband, Chris, my angel baby, Sephora, and my life fit into God’s unchanging upper story? Maybe, part of the answer is found in that old Hymn I heard last week at that powerful biblical musical my husband and I saw.

Through many dangers toils and snares I have already come.  Tis grace hath brought me safe thus far, and grace will lead me home!  –Our journey with Sephora has taken us through many emotions.  Those who hear her story and have graciously contacted us through visits, emails, blog responses, etc.–some have shared that they have been inspired by our courage and strength to overcome the loss of our precious baby.  “Grace” has kept us safe.  Grace has certainly kept us sane.  Through grace, we have been able to understand Sephora’s purpose.  Grace let us love our precious baby unconditionally.  Grace has shaped our life’s story by putting Sephora in it.  My husband and my faith assures us that God’s grace will lead us home to Heaven to finally be with our Sephora.  As the bagpiper played, and this verse sang in my head, I remember crying, however, a feeling of relief came over me.  Through meeting my husband 7 years ago, finishing college, getting married last year, finding out we were expecting, learning our first baby had a severe chromosomal abnormality, carrying her to the end of pregnancy, getting extremely sick because of high blood pressure, preeclampsia, and HELLP Syndrome, having an emergency c-section to save my life, giving birth to our beautiful little Sephora, and having her transition home to be with Jesus and all of the Saints who have preceded her in Heaven while she was in my arms, we certainly have been through a lot.  However, through His grace, we came through it all in one piece. This, I believe is the best answer I can offer those friends and family members who have asked…”How have you and your husband been able to make it through?”

Ephesians 2:8  For it is by grace you have been saved, through faith–and this not from yourselves, it is the gift of God (NIV 1984)