Transitioning into a Young Lady

Wednesday, May 1, 2013

This is the stage in Lily's life that I never wanted to get too,  Puberty!  Her body is changing and so are her moods.  She has become boy crazy overnight!  She is constantly wearing a brides veil and telling me she is getting married to a little boy in her classroom.  I catch her playing with her stuffed animals like they are her boyfriend.  I cant find the right words to tell her about the way she is changing.  I don't want her to feel shameful or embarrassed about her changes. And truthfully, I don't know how much she can really understand.  She has showed off her body changes so proudly, and to everyone!   I know the start of her menstraul cycle is just around her next mood swing.  I always hoped this day would come after she has stopped wearing diapers to bed.  But she is not ready to stop wearing the diaper.   I got her a book about her changing body.  We started reading it together.  But there are things that can't be explained in a book.   How do I explain to her about her sexual urges in a way she can understand?

It seems like I just got use to one stage in her life, only to be pushed into the next.  She might be ready but I am not!


The Birth Story

Tuesday, April 16, 2013

There is no better story than the story of ones beginning.  This is Lily's story

34 weeks

 The big question is; did I know Lily had Down Syndrome?  Did her Drs know?  Technically, there was no certainty.  But, mentally I had a feeling.  And there is no better test out there than a mothers intuition!  Lily was born at 38 weeks pregnancy by C-section.  The C-section was planned after a stress tests was done and there was a fetal heart rate drop.  Previous to the stress test we had had numerous Non Stress tests that showed little reaction with her movement.  In my heart I felt like maybe something was different with her.  I kept hearing a voice telling me she had Down Syndrome.  And I had heard this voice since the beginning of my pregnancy.

during a Non Stress Test

I will start in the beginning of my pregnancy.  It was not a planned pregnancy.  I had just had some major life changes and the last thing I needed was another child.  But she became a wanted blessing.  At 8 weeks, we heard her heartbeat and seen her in a sonogram.  The Dr told me at that appointment  that at my age (34) he would recommended a amniocentesis.  That was scheduled for my 16th week of pregnancy.  In the meantime, my pregnancy became very real.  I had found out the sex in another sonogram.  I felt my little girl moving in me. And I had already popped out!  So when the time came for the amniocentesis I was getting cold feet.  I had had a dream the previous night that I had the test and had to go to work and I was so busy at work I couldn't even sit down and I started to miscarry.  To me it was a premonition of what would happen if I took the test.  As I was laying on the table before the test I told her I couldn't  go thru with it.  It didn't matter if she had Down Syndrome or anything for that matter, because I had already felt her move and I was inlove with her.  I could not even conceive to have an abortion.  And that is what the test is all about, ABORTION,  If there was abnormalities.  At 16 weeks she was so alive in my heart and in my body that there was no way that an abortion could ever be an option.   Instead of getting the amniocentesis they gave me an ultrasound and during the ultrasound they said her neck was measuring wide which is a sign of Down Syndrome.  It was not an accurate test but they wanted us to know.  They also had us talk to a geneticist.  All I can remember from that whole ordeal was being there for hours being asked 1000 questions each and being told the same thing.  There was a chance she had Down Syndrome.  I wish I could remember the percentage rate they gave us.  But after hours of being there and all the information that was spewed at us I don't remember anything!

The thought of her having Down Syndrome never left my consciousness.  The next test was the quad blood work test.  And that came back negative.  So we were only left with the neck measurement pointing to Down Syndrome and......... my gut feeling.

My pregnancy was different in a way I can only explain as she hardly ever kicked hard and wasn't as active as my other 4 children were.  And at 34 weeks they started giving me NST and each time there was never reactions to her movement.  Meaning her heart rate never rose with her movements and stimulation from the buzzer never phased her.  And after each test I wondered if her non reaction was because she might have Down Syndrome.

When Lily came into this world she didn't cry right away.  I remember them trying and trying to get her to cry and she just didn't want to.  She was breathing, just not crying.  They wrapped her up and put her on my chest.  I looked at her and was relieved because she looked perfect.  There was no sign of Down Syndrome or anything else.  After a minute on my chest they took her away to clean her up dad followed but was told to stay out of the room while they tested her.  The next thing I can remember was being woken up in a room and being told that they were pretty sure Lily had Down Syndrome and she was not able to breathe on her own.  They sent her to the NICU for oxygen and monitors due to heart problems.  I asked why was she born ok.  I told them they were wrong that she looked perfect.  They said there were certain markers they looked for and she had them. One of them being her hand and thumb.  I can still remember trying to convince them she had just inherited my hands and being so mad that they didn't want to look at my hand and see what I was trying to show them.  Lily's dad was accusing them of switching babies after he was made to leave the room and leave her.  And he was serious!  And mad!  I can still remember the nurse telling him he was being ridiculous and he better face the facts!  That she had been a nurse for 25 years and, "she knew 'one' when she seen one".  Her words were like a slap on my face.  And to this day I can still hear her bitchy tone.  The next few days to follow were so blurry.  There was so much literature being brought to us.  And I hung on to every word in every pamphlet.  I wonder if I was looking for an explanation or just comfort.  The one thing that I really reread and remember was the essay, Welcome to Holland.  It was so true and so comforting.  It all seemed so surreal.  And her dad just kept saying they switched the babies, she was ok when she was born, and now she isn't.  They did something to her.  He was in denial.  And I chose to face the truth. Because deep down inside I was ready and prepared for this outcome.  As ready as anyone can be!  I started to grieve anyway.  Not for me, but, for her.  For the fact that she would always be classified and looked at differently.  I mourned, and I cried, for what wouldn't ever be.  I could not get pass the sadness of loss.   I wonder to this day what was more healthy, my reaction, or her dads reaction.

Lily had ASD and PDA.  She also had PPHN (persistent pulmonary hypertension of a newborn).  And to add some more guilt to my heart they said she had Thrombocytopenia due to maternal Lupus.  The good news was her two heart problems were so minor she probably wouldn't need heart surgery, which is so common to our Down Syndrome infants.  My poor baby couldn't breathe on her own, suckle or make platelets.  She had to have one blood transfusion after another.  It was so hard seeing her with an IV in her head and tubes and monitors attached to her.  I tried  hard to breast feed her but she could never remember how to latch on or suck.  But I tried for weeks before I gave up and just gave her my pumped milk.  I figured I could at least make milk right.  Yes, I was starting to have a pity party.  But I was all alone at my party.

I remember the first time I went to the NICU to try and feed her and all I could do is hold her.  She had no interest in eating.  I stared at her perfect face. and I put my finger to her little hand and there was never that reflex grip of her wrapping her hand around my finger.  Right than I knew for sure that what they were telling me was true.  She had Down Syndrome, she was different. And for months I grieved that simple little loss of her not being able to grip my finger.  Looking back I wonder why I took that loss as one of the greatest losses of them all.

Lily stayed in the hospital until she was 3 weeks.  We were so blessed that her health issues were never life threatening.  And at 6mo, on 9-11-11 she was released from the cardiologist care!  She has only a slight murmur but nothing to concern the Dr with.  We knew from birth that she had no hearing in her left ear.

I stared at Lily a lot in the beginning trying to figure out what about her looked like she had Down Syndrome.  I just couldn't see it.  I don't think it was denial.  I don't think I have ever been in denial.  And I think I was the first to notice when she did start looking very different.  I don't think I will ever stop mourning what she wont have in life.  But, now I also notice what we were given by her being born with an extra chromosome.  She is truly a shining light!


Gym Clothes

Wednesday, February 13, 2013

I was reminded this week that Lily is in Middle School!  She is not a baby anymore.  This was shocking and devastating news to me, since I see her as a 2nd grader still.  Okay, I am ashamed to say I see her as my baby!  The starting of her 6th grade school year Lily had sent home a notice saying they would be participating with the Middle schoolers in Gym.  And dressing out would be optional.  I know most mothers are all for inclusion. And I am probably incorrect in my thinking, but I truly believe in seclusion.  Mainly becuase I have seen how horrible children get teased by the so called "regular" kids.  And sure every year Lily gets a buddy who protects and plays with her when they join the "regular" kids class.  I know how strong peer pressure is.  5 months went by and all was good at P.E.  And than I get a letter saying Lily is the only one in the class that isn't changing out her clothes for P.E.  I let a week or two pass.  I just cant fathom  her changing her clothes with the big kids.  And yes she is a big kid too.  But to me she is my baby!  I don't want to cheat lily out of feeling like the other kids so I called the teacher to hopefully get a piece of mind about her changing.  Teacher said, she is with them when they change.  And since her P.E is the last class of the day she would go home with the P.E clothes on.  She reassured me that Lily will not be alone in the changing room.  So how could I say no to this logic.  It would be totaly unfair of me and selfish to keep Lily as my baby!  The next day the teacher helped Lily buy her clothes.  When Lily came home she was soooo excited about the gym clothes!  I was so proud of her that I got choked up.  My baby girl is in Middle school!  Dressing out for P.E!  

look at how happy she is!