The Peanut Gallery

Thursday, January 6, 2011

Fear

Thursday, January 6, 2011
Would it be safe to say that the last several months of my life I have spent crippled in fear? YES! Kennedy's condition is progressively getting worse and thoughts of her eminent death are always in the back of my mind. Yes, I fear my daughter and our families circumstances.......
  • I fear the uncertainty of her life
  • I fear that while I sleep my baby will leave us for heaven and I will not have been there for her last minutes
  • I fear that Kennedy will not be here for the birth of her brother
  • I fear that Kennedy's death will forever change who I am - to the point where myself or people around me will no longer recognize who I am anymore
  • I fear that I will not know how to function without my daughter
  • I fear that Kennedy' death will destroy my husband and my father
  • I fear that I have gotten in over my head with the upcoming arrival of our son - can I do it?
  • I just overall fear my future..
You may wonder what is with all this talk of death. The death of my daughter is eminent. I do not know when or where it will occur (oh the proverbial grey area I so love - not) but it will happen and unfortunately for us, it is sooner rather then later. Kennedy has not been the same since October. We are witnessing a heinous disease destroy our daughter before our very eyes. It has taken away so much - it has wreaked havoc on her tiny body and it is just getting worse and worse.

We met with our amazing Neurologist this week and I think we have come up with a solid plan to lesson Kennedy's agitation and keep her more comfortable. Kennedy has been battling with increased seizure activity the last couple weeks (as a good reference point she has not had any seizure activity that we were aware of in over 6-9 months) and has become increasingly more irritable on a daily basis. We brought another seizure medication onboard (she is now taking a combination of Keppra and Lamictal) and so far the two seem to be working together cohesively and Kennedy has been seizure free since the week prior to Christmas. Treating the agitation becomes a little more tricky. Due to Kennedy's low muscle tone and decreased respiratory drive we have to tread lightly when trying to prescribe sedatives. As of now Kennedy is starting an extremely low dose of Ativan which is meant to try and relax and relieve her agitation. With such a low dose, it leaves us room to adjust the dosage if necessary.

Well enough with this depressing medical mumbo jumbo. Below I put the rest of our 2010 Family Pictures. It will probably be one of the last photo shoots we have before our newest addition arrives at the beginning of May. To see more of our amazing photographers work check out her website here.



12 comments:

Jenn said...

Hi, I heard about your blog from Jenn Bagwell. I am reading your posts and am so moved. You sound like a truly amazing mother and woman. Kennedy is a gift to you, just as you are a gift to her, and to your baby boy. I wish you the best as you face the fear and unknown in front of you. More challenges will arrive, but with them, more joy as well. I am sure you will handle it all with grace. All my best,

Twins & a Toddler said...

Steph. I am so sorry that you guys have to travel this road. Baby K. Waht a girl, an amazing one at that. She has surprised us all and touched lives in an unimaginable way. She has touched my heart & taught me a lesson or two. I love you guys so much & will keep you in my prayers. i think of you guys often. i am so proud of you. i cannot wait to hear where you are going to nursing school. It is so hard not to be afraid, i have no advice to offer, Only thing i can say is i love you guys and baby boy so much! Hope Dr. G is taking good care of you:) She is awesome too!

J'aime said...

Steph... I can't begin to imagine what goes through your mind on a daily basis. I hate that you and your family have to experience this.

I believe that Kennedy is an angel here on earth. She may not be here for as long as we'd like but she is such a blessing to this world! When you look into her eyes, you can see her sweet spirit and you can tell that she is so full of love.

I know that you don't take one moment with her for granted. You are the best mom in the world and as much as you are blessed to have Kennedy, she is equally blessed in having you.

We pray for you always. Love you all so so much!

Brief Encounters Grants Pass said...

Steph you and your husband are such awesome parents your living every parents nightmare and handeling it with such love and grace your children are lucky to have you as parents you will change but it will be a change for the good from all you have had to endour I am not talking bout the everyday stuff that's So hard but all the mess ups with tests and losing the blood and urine how frustrating for you guys And you are still able to handle it with grace...my heart crys for you and the road your on so incredibly hard please know you have some one in oregon who keeps all of you in my prayers congrats on your pregnancy I hope Kennedy is able to meet her brother...hugs take care Ladawn PS I love the pictures your all beautiful

Deanna said...

I've been following your story for a while through Deanna Knott. I heard that Kennedy went to be with God last night. I just wanted to express my condolances and tell you that there are people you haven't even met that are praying for you and your family. My heart aches for you. Kennedy was a beautiful girl that touched hearts that she didn't even know.

HL said...

I just found your blog through Stefanie Wilder. I'm so so sorry to hear that Kennedy's story has ended. It's heartbreaking. I hope that your heart heals with time.

Brief Encounters Grants Pass said...

I am so very sorry my deepest condolences your all in my prayer Kennedy is so very blessed to have you for a Mom my heart just breaks for you All !!!LaDawn

Melinda said...

I also found your blog via Stefanie Wilder. My deepest sympathy to you and your family on your unimaginable loss. My thoughts are with you and I send you strength to get through the days to come.

tripleZmom said...

I'm another sent here by Stefanie Wilder. My heart goes out to you and your family. I am so sorry.

mrsbuckster said...

I, too, heard about your blog through Stefanie Wilder.

And I cannot even imagine what you are going through. My deepest sympathies to you and your family. Prayers and love and hugs to you.

Veronica said...

I'm so sorry to hear of the loss of your precious Kennedy. My prayers are with you and your family.

Gipson said...

Hi Stephanie -
I just saw in the comments that Kennedy has gone to be with the Lord. My heart aches for you! The knowledge that it is coming does little to dull the pain of reality.

I pray that, now that it is closed, God gives you the strength and perseverance to look back on this chapter of your life and process it.

You did a wonderful job with Kennedy, and summoned incredible strength to do it - it is only going to make you better parents to your new little one.

I'll be keeping you in my prayers.
God bless you both.
- Caitlin