Jeff and I started dating in June of 1992.  I had wanted another child for a long time, but my circumstances didn't permit it. When I found out I was pregnant in November of 1994 I was thrilled, even though Jeff and I were not yet married.  When I found out I was having a little girl, I was ecstatic!

My pregnancy was a normal one, uneventful except for some spotting in the beginning that scared us, but an ultrasound told us everything was OK.  Shania was born August 18, 1995 weighing in at 8 lbs. 6 oz. and 20 inches long.  She had a FULL head of blonde hair, which was commented on often because you usually see dark hair when there is a lot.  She was a beautiful, content little girl with a quiet cry.

The first few weeks passed, and we marveled at how good she was.  Then the worries surfaced.  I provide day care in my home, and so I had the opportunity to hold a little girl the same age as Shania when they came to meet with me.  Immediately I could tell the difference between them.  This little girl had some suction on her and felt stiff, for lack of a better word.  All of a sudden Shania felt like a sack of potatoes.

I waited though, until Shania's 2 month check-up to voice my fears, as our families kept trying to reassure me saying she was just a lazy baby because she was so chubby. But at that checkup, everything changed.  Now I wasn't worried, I was scared!

The pediatrician sent us to another hospital where the endless tests began.  They first told us that Shania would be in a wheelchair for the rest of her life.  She would not be able to sit up, crawl, walk, etc.  We were crushed but came to grips with it, thinking, there are worse things right?  Well, 10 days later, when we returned to the hospital to have Shania's stitches removed from her muscle biopsy, we were to find out just what worse was.  They told us the devastating news that Shania had Spinal Muscular Atrophy, type 1, also known as Werdnig Hoffman disease.  Then they proceeded to tell us to take her home and love her, because her life was to be short.  80% don't make it to a year old they told us, and the other 20% don't see 2.  NO!!! This can't be happening to us!!
 
We found out that time doesn't stop just because your whole world feels like it has been blown apart.  Somehow we made it through.  Looking back, it is such a blur.  We went from anger to denial and even grieving so many times.  But Shania did really well for a long time.  She never lost her ability to suck, but was primarily only formula fed because solids caused her to get real "gunky", as we called it anyway.

Shania's first hospitalization was in March of 1996. We spent 5 days in the hospital due to a collapsed lung. Talk about scared!  Right away we thought it was the end.  We had planned on having her baptized in April at our church, but we called the pastor and had her baptized in the
hospital.  That little hospital room was overflowing with friends, family, and love.  But Shania was a fighter, and she came home.  We had her baptized again then in April at the church, seeing as the hospital gown wasn't exactly what I'd had in mind for her baptismal gown! 

The end of April Shania was again hospitalized for a collapsed lung, this time worse.  She ended up in ICU this time.  Her doctor, after a few days of no improvement, decided it was time we take her to Madison, a much bigger hospital, more equipped to handle her condition.  They took Shania by ambulance, and Jeff and I had to follow in our own car.  It was the longest 2 hour ride of my life!  Upon arriving we had to make arrangements to stay at the Ronald McDonald house, and it seemed like forever before I was able to see my baby girl again.  We stayed with her at the hospital until quite late that night, and it was very hard to leave her.  Needless to say, I didn't get much sleep. 

The next morning we got up and rushed back to be with her, but found out that the doctors do the rounds in the morning and you aren't allowed into ICU until they are finished.  When we finally got to see her we could tell there had been no improvement.  Everything they tried to do to help her, she fought.  She would actually do worse!  Her O2 sats would drop, her heart rate would go sky high, it was awful to see her suffer this way. We decided that if it was her time, than we wanted her home, not in a strange city without all of her family and friends around her.  We told the Dr.'s we wanted to take her home, and they immediately made arrangements to have us brought back by ambulance.  The amazing thing was that as soon as they unhooked all the contraptions that were supposed to be helping her, she started to improve!  I saw the first smile we had seen in weeks!  I knew right then and there we had made the right decision.

So we left our car in Madison, and road back in the ambulance with our daughter.  We arrived home around midnight, to a house full of love.  We brought our daughter home to die, but she chose to live. Within a week, she was off the oxygen, and back to her old self!  We ended up having the best summer with our little angel, taking her to the Milwaukee Zoo, sitting around campfires, oh, how she loved to watch the fire!  Visits to the park, and lots and lots of love.  We threw her a 1st Birthday party, with a Dreamsicle angel cake.  And then it all came to an end....2 weeks after her birthday she fell ill again.  Collapsed lung and another hospital stay.  After 4 days, with no improvement, I begged to take her home.  And that is where we spent our last weeks together.

And that is where she left us.  September 20th 1996, Shania was dozing on the couch when her oximeter went off.  I went to suction her, and never got the chance.  She gave me one last look, and left this awful disease behind her for a better life.  It was the hardest thing I've ever had to do, letting my baby girl go.  But I thank God for giving me 13 precious months with her, and opening my eyes to what is really important in our lives. 

To my Precious Angel Baby....
You will never be forgotten, that I can promise you.
Until we meet again....