Eighteen years ago today I became a mom for the 4th time to a beautiful 5 lb 7 oz baby girl.  My 3rd girl to be exact and we have 1 boy.  As an expecting parents, rather it be 1st or 7th we ask   the same questions.

Will I be a good mom?  How will I do this?  Will my child like me?  Will they be smart?  Will they be president some day?  Will they be healthy? Who will they look like?  What color eyes and hair?  You know the basics.

We never ask that our child have something wrong with them, or ask that everyday be a challenge, nor do we say let them struggle.  Unfortunately many of them do, we can not control  this.  If so we would have a lot of presidents, lawyers, doctors and beauty queens in the world.

Our daughter was born with exposure to Acutane, a medicine prescribed for acne.  My doctor never did a pregnancy test, didn’t explain the harshness of the side effects, and well failed me as her patient along with our daughter.  I only took the medicine for a month and I am thankful that it was not any longer.  I stopped because well I don’t really remember why, I just did.

I have seen pictures of babies born with this exposure whose mothers had taken the drug longer those results are why I am thankful I only took it for a month.  I was off the medication for about 3 months when I found out I was pregnant.  I was getting ready to have a breast reduction surgery  they did a blood test and called me with the results.  I called my ob went to an appointment and discovered I was 5 months pregnant.  Yes i was one of those women that didn’t know.  That is a story for another time.

At 7:20 am on this day in 2000 our lives changed.  Imagine, if you will, a dimly lit room,  the only sounds are that of you breathing , your husband and doctor coaching you on.  Within seconds of your final push you begin to hear yelling , doors slamming, carts being pushed and  equipment roaring to life you are suddenly aware that people are rushing towards you from doors you assumed were closets. Suddenly you baby is raised for a split second for you to see a then as quickly as the excitement began it is gone and so is your baby. The brief sight of our new baby that we received left us nothing.  It would be hours before we would see her again.

Our first real look at her came almost three hours after her birth.  We were escorted to the NICU, were our little girl laid hookup to all kinds of machines, tubes sticking everywhere.  This is where the nurse let us know that her bed had ready for two weeks.

She informed us that doctors had been put on standby and one by one they were making their way to see her and would then come visit with us and discuss their findings.  Of them all we only kept with one and that was her cardiologist.  Dr. Butto, he was to me a God-send.

Anyway back to the NICU unit.

We were told that she wore patches on her eyes because they were not sure if she had anything in her sockets (she did).  She remained on ventilators and other equipment for only 24 hours.  Surprising everyone, including her neurologist, who claimed she had no brain activity and was surprised she could breath on her own (we got rid of him  QUICK).

When I went for my 2 week follow-up the nurse asked me if she survived.  I was happy to report yes, yes she did.


As you can see she was born with some deformities.

She was born with three holes in her heart, two of which were repaired at the age of 3 months old. She had no ear canals, until the age of 9, they drilled one for her. Her eyes are sunken and she has facial deformations.  She was in a wheel chair for over half her life – I am happy to say she is walking today.

With the help of many people and a great support group she is here.  That is what matters.  There are many days that are a challenge for her and us.  There are days when I just don’t think I can do anymore, I just want to give up.


Raising a handicapped child teaches you that you are strong.  Even when you do not believe it, you know you have to be.  Therefore you continue.  This child will teach you just how unconditional love is.  They will show you joy can be obtained from the smallest of thing.  They will show you that no matter the obstacle, if you are willing to work at it, it too, will be conquered.

We all need to take a lesson from these babies.

As a parent of a handicapped child I can also relate to the stress it can bring.  I also understand it can be hard to find a good support group.  You cannot give up, it is there look for it and ask for it.  Taking a little extra time for yourself is not a crime if the parent of a normal child needs it then we need it too.

Is it just me or does the word “normal” really bother you at times?  After all my child is “normal” for her.

Fast forward many surgeries and obstacles,  years later and we have a beautiful 18 year old that keeps us challenged as well as challenging herself. She enjoys being with her family and friends; she enjoys balloons, plastic bags, bugs and TOODLES (yes from Mickey Mouse).  For her birthday this year we are taking her to Disney.



Over the course of the last 18 years we have had a lot of help.  A big part of our support is our families.  It surprises me the number of our family members that accept our “normal” and are always understanding.  Another  big part of our support is the  many doctors that God blessed with the knowledge and skills to help keep her in our lives.  Many teachers and therapist that are always their to help in finding a solution for any new challenge that may arise.  We thank them all.

If you find yourself in need of some support, check with your local intermediate school, your local community health department and even your doctor.

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