November 12, 2002  Ok here is a rough day...Nathan's 4th angel birthday.  Lily and I really didn't do anything special except that I did tell her things about her big brother who is watching us from heaven.  I miss him so much but am thankful that he is in heaven running, jumping, and playing with all the other little SMA angels that have gone there with him.

November 14, 2002  Lily and I did make it up to the cemetery to visit Nathan's grave...it sounds morbid but really it wasn't and it was beautiful.  It is a peaceful place really and he is right beside a little chapel that is beautiful.  I talked to Lily about Nathan and let her know what a special big brother that she has. 

November 19, 2002  Ok, here we go with the first cold of the year...yeah.  It was a rough day but Lily is handling it great.  I gave her extra bipap time and kept her up on her Motrin and Tylenol.  Bless her heart she just wanted to be held and rocked.  She is definitely a mommy's girl today.  She has lots of snot but seems to be handling it fine.  She was up and down last night through out the night and seems to be in a bad mood today but I know how I feel with a cold too uggggg....hopefully this will be a small and short cold.

November 20, 2002  Well, she seems to be better today and is handling the extra secretions fine with lots of cough machine (yeah for that machine...) and extra bipap time too.  My girl never takes a nap but ended up taking a 4 hour nap today so I know she doesn't feel very good.  Our sleeping schedule seems to be all out of sorts but oh well..we can get back to normal when she feels better.  She slept better last night and ended up sleeping for a total of 12 hours without waking up but of course we had a lot of extra coughing with the machine this morning but all in all she is doing great BUT I certainly want this cold to be over with.  One positive thing is that my independent daughter seems to really need me and wants to be held A LOT which is nice.  We snuggled on the couch all day long for the most part.  That was nice.

November 21, 2002  Well, we had a rougher night last night having to get up a few times and use the cough machine but she certainly feels better today.  Hope this is over with soon. 

November 23, 2002  I have been trying to catch up on things but when you fall behind....you know how it goes. 

I know there are a lot of people who start off here so let me briefly say a few thing that have been on my heart and I hope it touches someone who is hurting as well.  As you read in our story I have had 2 children with SMA, my first son Nathan who passed away 4 years ago this month on the 12th and a daughter who was born on May 30, 2001.  Why this has happened to me I don't know and I cannot imagine and for many people this would be to much to take BUT I have to say that having both of my beautiful children has taught me so much in this life.  I have been a christian for a very long time but when I look back at my life I haven't lived the way that I should and I have not been a light for Christ at all.  I was raised in church pretty much my whole life yet I am still an infant because I do not let God in my life and I do not change.  The last 4 years have been horrible, for many of the choices I made and because of the loss of my son and the diagnosis of my daughter BUT guess what?  God is still there, he has sustained me.  This past year has been a roller coaster and when I look back at a year ago I am amazed at how much I have grown and how much God has given to me.  In May my husband left me and my daughter for reasons I won't go into on the journal BUT it was not because of the stress of SMA or any of that, he left to follow his selfish ambitions and I would say that was a very dark time but God has been here for me.  Not everyday is a picnic and I struggle with the anger I have against him but still when it is all said and done, God has not forsaken me and has used all of this to teach me and help me to grow in him.  I am not perfect or always a receptive student, and I am very selfish and shallow and sometimes like to wallow in self pity but when I look at everything that God has given me and has done for me I have to step back and just go WOW.  I had one of those moments a while ago and that is what prompted me to write hoping to share this with someone who needs to hear it.  As I sit here and type this I am listening to the even breathing of my sweet beautiful daughter on her bipap, knowing that she is safe and sound.  God has given me the ability to take care of this precious angel that he has placed in my care on this earth and of course it is not always easy, I struggle with the "why me" a lot of the time...who knows why?  Certainly God thinks I am a lot stronger than I sometimes feel I am but I do thank God that I have been entrusted with such a sweet gift in this life.  When I look into her eyes so soft and sweet I am overcome with pride, love, protectiveness, and to many other feelings to write down.  When she smiles at me all the cares of this world and this life seem to fade away.....just when she smiles.  I cannot imagine how I could love something any more than I love her then I am overcome with thankfulness that God loves me even more than that...wow.  God, my father, my protector, my fortress, loves me even more then I love my baby girl.  Many times I feel sad and depressed thinking about things that have happened but in the end I can feel God's arms wrap around me, comforting me when there is no comfort left. Many times I feel alone in this battle but God never leaves my side and gives me the strength to fight even when I feel I can't go on anymore.  Thank you God for all of that...because without you I don't think I could go on somedays.  I know that God has a purpose in my life and in Lily's life and who knows how many lives she can and will touch.  A friend whom I have "met" through the internet, which has brought so many of us SMA families together, uses a quote at the end of her emails which says "God does not promise us a safe passage but a safe landing" and how true is that?  So much on being brief with this huh?  Well, I think I will close this for now BUT thank you all so much for reading and keeping up with us through the journal...it has been quite a journey but Praise God he has kept us through this all and that I can still be called a child of God even when I know that I don't deserve it. 

Forgot to update on Lily which is the reason for the journal huh?  She is feeling a lot better but of course the coughing has set in now which isn't fun with her weak little cough.  She coughed a lot tonight so I ended up putting her on bipap really early tonight after she had a high heart rate and her O2 level was down some.  Her lungs are clear (thank God) and it just seems to be the annoying cough going on.  She is doing fine other than that and is almost back to her normal little mean butt self.  elf. 

November 26, 2002  Well, another day of coughing for us.  She did fine with it yesterday until the evening but she woke up this morning coughing so she is back on bipap resting right now.  I hate to see her cough...uggggg
Something very exciting happened to us last night....Wave 3 news came out and interviewed us for the news program today.  The interviewed us and another family in Louisville with an 11 week old baby who has SMA type 1 as well.  They came out last evening and asked me all sorts of questions and filmed me with Lily.  Lily looked WAY TO CUTE of course but she was so funny, she didn't crack a smile the whole time.  My little face girl never even made a face, not even a mean one.  She just looked very serious the whole time....ha ha.  Well,  I am not sure who great the interview was or what they will use of what I said but I do hope it raises awareness for SMA at least.   They didn't really want me to talk about what we do for Lily so much as quote statistics about SMA and stuff and of course Lily and I ignore the statistics for the most part.  She asked me a question about Lily's quality of life and it was stated like this "I know this is a tough question for you but there would be people who would look at Lily and say she has no quality of life, what would you say to them?".   I think I said a pretty good response BUT I am not sure how much of it will be aired.  I hate that question really...who on the outside of our home knows what Lily's quality of life is?  I mean come on, unless you are with us 24 hours a day for 7 days a week you have no idea how Lily's quality of life really is.  I told her basically that...I said "well, I would say that most people do not see what I see, they do not see her smile, make noises, make faces, watch her face light up when I walk in the room, see her watch her video's, see her face when we go shopping, etc.  I mean ask Christopher Reeves the same question...he would tell you he has a good quality of life.  Ask any one in a wheelchair etc.....not this is not an easy life, no this is not the life that I wanted but this is MY life and Lily's life so what right does someone else have to question Lily's quality of life?  Certainly the doctors feel they KNOW what her quality of life is but of course they really don't.  Well, hopefully I will be able to make someone of an impact of someone....
Well, I need to get to my little bipap princess....