Friday, April 23, 2010
In such an agitated state how could I tell my hurting son to be quiet and rest when I couldn't be still myself? How could my restless presence be his comfort?
Somehow, however I sensed God whispering those same words to me while I rocked my son. "Shhh...Jolene. Be quiet. Lie still. I'm here" In those moments, I wanted to crawl into His lap, feel His gentle arms around me, and be comforted while I grieved my son's loss of another day of good health and my loss of another day of normal life: trick-or -treating on his first Halloween, pushing his stroller around the block, playing peek-a-boo in the evening.
At the time I didn't know I was grieving. Grief, I thought, was reserved for parents who lost their children. As the parent of a child who would someday be healthy again, this was ground I thought I was not allowed to tread. But I was wrong.
..."At some point, you do have to grieve and you do have to face what's happened, weather its your child living, but not healthy the way you dreamed...or if you actually lost your child. Weather you admit it or not, you are grieving, and you have to be able to reach out and talk to people".
I am grieving. I do grieve. I grieve for what could have been. What should have been. My dreams I had for my perfect little family of 6. My dreams I had on Sept 5th. The day before Tara was born. How I would hop right back into being a mom, cooking and cleaning, packing up to move into our dream house in just 2 short weeks after she was scheduled to be born. I was ready, I was excited, I was anxious. Then on September 14th I felt as though my dreams had been shattered. Not just dropped, but shattered like a precious crystal vase dropping on the tile and not being able to be pieced together. I couldn't even find all the pieces. They had shattered into a million pieces. The morning the nurse told me to go in and say goodbye to my daughter, was the day I started to grieve. Not grieving as some may think, as she is here with me still, but grieving what could have been, what should have been. She sits on my couch right next to me. Amazing me daily. But I grieve what could have been. I long for the days when a common cold didn't send me into over drive (more on colds a different day...). 19 admissions. My sweet little girl who deserves "normal" has had 19 admissions in her 2 1/2 years of life. That's not normal. But its normal for us...now. Its our new normal. Every day I am learning how to have a different dream for my child. 1 day at a time. Thru Gods grace and his love, I am learning to enjoy my new normal, and smile for all He has done for me.
"Shhh...be quiet, lie still. Listen to Him whisper. I'm here". (more from Jolenes book)
Dear Father, quiet my soul. Whisper to my heart, touch me with your hand and be present with me as I grieve for the small things lost today. Hush me. Hug me. Be here with me.
I've kept my feet on the ground, I've cultivated a quiet heart. Like a baby content in its mothers arms, my soul is a baby content.
Wednesday, April 21, 2010
And doing fantastic I might add!! She amazes and inspires me...daily!!! We started the process on Monday. I did the same "method" I used with Jake (only about a year ago). Its Laura Jensons 3 day potty training. There is some "prep work" that you have to do, and I have been doing that, but the 3 days EASY!!!! (horrible for Jake on Day 1) Tara had 2 accidents on day 1, 1 accident on day 2, and ZERO accidents day 3 (today)!!!! Seriously this little girl is amazing!!! I am keeping a diaper on her at night (I did the other 3 cold turkey), but really we are still working with the new lasix schedule. I Talked to her cardiologist Dr. Fagen yesterday, he totally "gets it", he agreed to let us move her lasix schedule up to 4pm instead of 8pm for the next few weeks while she is working this potty training thing. But even with giving her lasix at 4 is it fair to put her to bed at 8 while her meds are still working to direase her? So we will wear diapers at night for a bit. She is only 2 1/2... So all in all, I am so proud of her and her ability to amaze me!!!! Not bad for a girl with brain damage huh?!?!?!
So now what you ask will I do with all the extra money we will be saving? Adding another date night into the mix? Vacation? A new car? New pair of shoes for mommy? A new purse for mommy to ditch the diaper bag purse? Proubably just paying medical bills.
p.s I just found the spell check button...your welcome mom.
Thursday, April 15, 2010
Wednesday, April 14, 2010
So while this was happening at my house...
This is what was happening on a cruise to the Carribean as a family of 6+1.
(Jims Aunt Tami "TT" was kind enough to stow along with us to help with the munchkins.)