Today has been bad. No not Dawson. He's doing OK for the most part. Yesterday was a good seizure day ( if there is such a thing) but as of 7:00 am he had already had three clusters through out the night which is totally not cool.
But besides that, my brain has been in total lock down mode today. Thoughts of all these kids have crowded my thoughts to the point that I could no longer think of anything else. ( I'm hoping blogging about it will help some.)
My mind today has been filled with thoughts of Trevor and his upcoming brain surgery. Thoughts about what do you do when your faced with such a thing....
Thoughts about Bennett who is fresh out of brain surgery and how in the world do you find the strength to let strangers, for the most part, open your son's skull and take out part of his brain.
Thoughts about Reagan and how much longer does she have to suffer these horrible seizures accompanied with stomach pains so bad she screams for hours. And as parents, how in the world do you cope with a child who's seizures are so bad, and have been for so long ,that developmentally she is at a stand still.
Thoughts about Connor and how his parents are at their witts end as to what to try next to stop their sons seizures. And how miserable it must be to have to hang your hat on what I call the
" Medicine guessing game"
Thoughts about Kendall who recently became seizure free on the Ketogenic diet only to end up in the hospital weeks later with not only seizures, but a diagnosis of Diabetes. And how in the world do you ever get over watching your daughter have a seizure that lasted an hour and 15 minutes.
Thoughts about Zoey who was born with Down Syndrome. Then had heart repair surgery while an infant. Then was diagnosed with Infantile Spasms. Then diagnosed with Acute Myelogenous Leukemia and beat them all back with a stick. Thoughts about how hard it must have been to have to watch all the surgeries, all the meds, chemo treatments, long hospital stays and how in the world her parents lived daily with the thought in the back of their head that their daughter could possibly die from this...
Thoughts about Jackson and his brain surgery from months ago how do you cope with having seizures after going through all of that...
I dont know why my mind is bogged down with all this at one time. I guess the truth is, is that I am really sad that these kids, whom we have come to love, have to go through this kind of struggle. Each one different. Each one with a different fight. But in a way, they are all the same.
Tonight at dinner, I said the words " Trevor" and " brain surgery" and thats all it took to bring Allison to instant tears. We talked about all these kids andven more that aren't listed here and I can't help but come to one conclusion. Even though today, the thoughts of all of you have been like dragging around an emotional anchor......... I am such a better person for knowing you. I have gained so much from your fight.
I am so proud to be able to say I know the Bennetts of the world. The Trevors, and the Reagans, and the Zoeys, and the Connors, the Kendalls and the Jacksons of the world.
These kids, though small, are Mighty Warriors and Fearsome Fighters in my mind.
Maybe the thoughts of all of you have been with me today because I dont think I have ever stopped and told you " Thank you" for what your kids mean to us. Their courage is amazing and we will be praying for each of you.
Our love to all
Jeff and Allison
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6 comments:
Our love for you spans the distance that separates us and well beyond even that.You were one of our first friends when we entered this nasty world of IS.I came here to garner strength to get to the next moment.I looked at pictures and learned as I watched Allison injecting Dawson with ACTH,in the car,in his car seat because that's what we do as parents ... we just do it.We may scream and cry and kick along the way but we just do it.Back in the day,when we were still battling this beast,I came here daily to renew my faith,literally.When I questioned God,cuz I did,I came here and I saw your unwavering faith in Him and His unwavering faith in us and I was able to pull it together and get to the next moment.That was medicine for my soul and my broken spirit.We love you and we love your son and one day I hope to stand before you and your beautiful family and thank you in person and wrap my arms around you and say see,out of the darkness came this,a bond and a friendship that has no price and can't be replaced.Ever.We send our love right back at you and our prayers continue to be focused on seizure freedom for not only Dawson but all these other amazing,resilient,courageous warriors.
Thank you for your continued prayers! Such a sweet and sad post at the same time. I know how you feel. I think about these kids and often times I'm moved to tears. It just doesn't seem fair, all that they have to go through day in and day out. But it reminds me of something a neighbor once told me (she's a nurse in the GI clinic at TX Children's). She asked me how Reagan was doing and I told her not great and went on with a long list all of her problems and then she said something that at the time I took as rude. She said "Everyone has problems". At the time, I thought how insensitive! She has no clue what we go through on a daily basis. But I've grown wiser since and realize that everyone is touched by some sort of medical issue or drama in their life. Even if it's not you or your child, it's someone in your family, or your friends. Everyone goes through difficult times and sometimes you need to just give people a break. Even if they are rude to you in the supermarket line or they cut you off while driving. Maybe they are going through some sort of trauma in their life as well. Realizations like this help me to see that I have changed from this whole experience...for the better.
I feel the same way.....lucky......at least in that I have gotten to know some really fabulous people, who are so brave when faced with so much. I also some days feel the weight of all the children's struggles, but at the same time they inspire me.
Oh sheesh...are you on a making the girls cry streak or what?! Beautiful. Thank-you. Because you said so many things that I have been feeling...and a large part of the reason I have been funky lately...but just couldn't spit out. And thank-you because I needed a good old fashioned snot fest! I couldn't agree more...in many ways the people that have found their way into my heart through this journey...are quality. Keeper friends. And that is a huge chunk of the where I keep find the courage to keep moving.
xoxo
...danielle
not much time to comment...baby in my arms and typing one handed. just know your prayers and support mean so much to us. thank you.
Ok, way too early in the AM for me to be crying!! i thank you so much for this post. I too have had a heavy heart thinking of all of these kids lately. Maybe that is why I haven't been quite so eager to be in the blog world as of late. It's just so sad to think of what all of these warriors are going through, and will face in the years to come. I remember when I first came to your blog I was filled with such hope from reading about Dawson. Even to this day, and despite the IS monster returning, I have never once detected anger in your writing. Sadness maybe, but never anger. I often wish I had your faith in things turning out ok. Dawson is very lucky to have you and Allison as his parents, and I'm very lucky to be able to count you 2 among my treasured friends!! Love you all! {{{hugs}}
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