My cousin’s baby has Smith-Lemli-Opitz Syndrome (SLOS). It’s a genetic disorder that affects the development of children both before and after birth.
Children with SLOS are unable to make cholesterol, an essential nutrient. Feeding problems and “failure-to-thrive” occur in most children with SLOS and they have trouble with development and general health after birth.
I was very saddened to hear this news because this innocent baby girl is helpless. She is seven months old and weighs only seven pounds. She is not thriving quickly enough, even with cholesterol treatment.
News like this makes you very grateful for having a healthy child. You feel silly thinking about the time you worried when your baby was only in the 50% percentile for weight and height when she worries that her baby hasn’t grown an inch or pound – yet. Or that your baby wouldn’t finish all her veggies when her baby has never tasted them before since she can only be fed through a tube.
My cousin lives in Greece and is getting the best care possible for her baby. She is so optimistic and has high hopes that her daughter will go on to live a healthy and fulfilling life. Her strength is unwavering.
It’s amazing how a person, under the most difficult circumstances, can rise above anything in the name of love. It’s her baby – she will do everything in her power, move mountains and part seas, to help her daughter.
In the face of such a harsh reality, I find it remarkable and truly inspiring to see a woman as hopeful and determined. She is a mother, after all. A mother’s love is the greatest of all.
A Mother’s Love
by Helen Steiner Rice
A Mother’s love is something that no on can explain,
It is made of deep devotion and of sacrifice and pain,
It is endless and unselfis hand enduring come what may
For nothing can destroy it or take that love away . . .
It is patient and forgiving when all others are forsaking,
And it never fails or falters even though the heart is breaking . . .
It believes beyond believing when the world around condemns,
And it glows with all the beauty of the rarest, brightest gems . . .
It is far beyond defining,it defies all explanation,
And it still remains a secret like the mysteries of creation . . .
A many splendoured miracle man cannot understand
And another wondrous evidence of God’s tender guiding hand.
2 Comments
The struggle of a parent is that we never stop feeling like a parent, and a little responsible for their behavior. These are complex and textured relationships; we want them to grow, we want them to stay, and they want the same impossible things.Emotions are an intangible stirring of feelings within each and everyone that occasionally take physical form to ensure that everything is not always kept to ourselves.We feel as humans because true life is the weakest numbing agent in the world.
“Mother love is the fuel that enables a normal human being to do the impossible and Mother is the bank where we deposit all our hurts and worries”.
——————
Gillberk
WHITE HAT
Thanks for reading 🙂