Sunday, February 27, 2011

Michala in Marlee Anne's desk chair

I caught Michala in Marlee Anne's desk chair. She climbed up there all by herself. She was so proud & even looked me off when I told her to get down. Such a teenager attitude going on. Love it!!!


Monday, February 21, 2011

Peter Pan

I cannot seem to shut my mind off tonight. I am standing, well ok sitting vigil over Michala tonight. She has been having some very strange going ons for several hours. Right now she is sleeping beside me. We are praying it's a migraine & will be much better in the morning. So while I am sitting here with her I thought I would share our day. Sometimes in the midst of our seizure & medical filled days we are taken away & experience something that brings all of us joy together as a family. Today thanks to wonderful Camp Sunshine & amazing Peter Pan we did just that.

I have a feeling my words will not convey the amazement of this show. It's in the white tent beside World of Coke. If you have the opportunity to go in Atlanta or anywhere please do. You will not be sorry!

We were seated on the front row in the wheelchair section. Even for Mike & I those seats were really below the stage so don't sit on the front row! Marlee Anne has the opportunity to move to the second row during the second act & that was much better she said. However she did say that dad's lap worked really well too.

The screen is 360 & the view is spectacular. As the narration started I began to cry. I have always loved this story. Well when Peter Pan, Tink (oh my!) & the Darling children flew through the air I wish I could have taken pictures of my children's expressions on their faces. No words!

Ok all the cast was amazing. Tinkerbell had an attitude that was priceless. At one point Tink is hurt. Peter tells us all to whisper we believe in fairies. As I look around to see people whispering my eyes lock on this precious little girl. She is seriously into making Tink fly again. When Tink flies this little girl is amazed! This little girl could have very well fought cancer or is fighting it now but at that moment that didn't matter because in her sweet little mind she just single handily gave Tinkerbell the power to fly. Priceless!!! Then when Peter Pan & Captain Hook were right beside her fighting she was in awe one minute & laughing the next.

No way Camp Sunshine or Peter Pan the show could have known that it would impact so many lives on those few hours today. Maybe they hope they would. Well they succeeded. At least with our family I know they did.

So again if you have the chance to go see it please do.

Afterwards we had big plans to go to the Cheesecake Factory. However some of our Camp Sunshine friends wanted us to go eat at Baha Fresh with them. It was a great way to end the day spending time with them. So wonderful to see everyone!!!

Ok if you made it this far & it's still Monday please say a special prayer for Michala. Well even if it's Tuesday but hopefully by then all will be well.

Wednesday, February 16, 2011

3 years ago

3 years ago the nurse had just come to get Abe to give him a bath so we could go home that morning. Within minutes I heard them call a code blue. I knew right away it was Abe. I waited a few minutes & no one came. I walked down to the nursery & was told to go back to my room. In a little while the doctor came to tell me Egleston was on the way to get him but she didn't think he would make there. 

When Mike got to the hospital we took the walk into the nursery to say our good-byes. Very similar to the journey with Mary Elizabeth years before. Once again family & friends came to journey with us. 

I would have much rather taken him home & played house. However looking back I know had that not happen in the nursery he wouldn't be with us today. 

Those 5 weeks in the NiCU were so hard. However I know the dear friendship that was renewed in Marvel Anne, the new friendship made with Nancy, Kim, sweet little Bridget, our dear Terri's, our forever friend Rebekah who spoiled him & of course our ever faithful Mo. Can't forget the NICU knitters that taught me how to knit. None of that would have happened. Even though I hated the suffering I am thankful for what came from it. 

As I hold him now helplessly as he struggles with seizures I am thankful God had other plans. Not the seizures of course but his life. I have learned so much in the 3 difficult years of his life. So thankful to be reminded that this is only a blink of an eye. 

I have had trouble today just being able to breathe. I so hope that this is behind me & there are better days ahead. For some reason I wasn't prepared for this to hit me so hard this year. 

Monday, February 14, 2011

From Abe's daddy

If I ever question God's plan for my life I have just been reminded that He knew all along what He was doing by bringing this man into my life. Mike wrote this letter for Abe & I asked him if I could share it. Many of you don't get to see what an incredible man he truly is. I am blessed that God created such an incredible person that along with juggling the stresses of our family's medical needs, his job that provides all our needs, my wonderful (ha) female self & he still has the patience & love to share with us. He could have easily walked away. Blessed beyond measure in so many ways! The other day when I came home crying from a shopping trip to help find a gift for Abe & he said I understand - he truly does!

Happy Birthday Abe,


One thousand and ninety five days longer than I expected. Yes I remember it well, sometimes too well.  The day you came into this world and the horror that followed. The mere thought of having to give you back right after you came was heartbreaking. Can't say that I blame you, if I saw what you were getting into, well  I might have asked to be recalled if I had a choice. After Marlee Anne was born I thought your Mom and I had gotten it right. Turned out to be  just more pain and suffering for an innocent child. You see Abe, Marlee Anne was not suppose to be the only one who would gain a playmate. Now mind you, I have never been partial to a child's gender. I would have been just as happy and proud to have raised four girls, but even so I had hopes and dreams of what the two of us could have done. The world would have not been able to contain us. Sadly I get to stand by and watch you suffer through another difficult day. I wish I could fix you and make things right. However, I am just a simple  man, incapable  of healing you, but forever able to love you. Your recent smiles and giggles have been such blessings and I believe that better things are to come. I can't  help it Abe I am just that way. I believe in the glass half full. I just know that God has a purpose for everything, not just for your life or my life, but in everything. Abe I look forward to the days ahead. There will be challenges and difficult times for sure, but we can make it. Even in the valley of the shadow of death the Lord will be with us. You see Abe I know how  the story ends. There will be an eternity of time for the realization of all of our hopes and dreams, but just not here on this Earth…… just not here.


Happy Birthday My Son!

I love you,

Happy Birthday Abe

Three years ago I was at the hospital waiting to be induced to have our precious baby boy. I think Marlee Anne was the most excited of us all. She had dreamed of this day & all they would do together right along with us. She always said for his 3rd birthday she was going to take him to Toys R Us & let him pick out whichever ride-on toy he would like. Instead she struggles just like us to find something besides diapers or an outfit that will work for him. Mike said everywhere he & Marlee Anne turned this weekend there was a 3 year old little boy running around. While we are rejoicing that Abe is 3 we continue to grieve the little boy we lost. 

We are so thankful to have friends & family that understand how very hard this is. His birthday party is not about the gifts but about celebrating the gift of his life. 

Even though I struggle & don't understand it I am thankful. My prayer today is that satan would flea so that I can fully receive the blessings God has in store for me. Also that the water works would stop before Marlee Anne sees them. I don't want her memory of her mom to be she cried all the time. 

We would like to thank ya'll for being there for us & praying us through the first 3 years of this rollercoaster ride. We would like to thank God for carrying us through and showing us what matters most in life.