Not sure if my absence has been noticed much here....
The plain and simple truth is much of life has been tough.
Many struggles, many emotions...sometimes playing them all out here feels like reliving
it all...all over again. Staying quiet, keeping it all in my head, is sometimes easier.
I am willing to share about Hudson....and this is his stage....
The last 2 weeks his seizures have been relentless. It has been such a vicious cycle of riddled seizure days.
That in itself can rip a mothers heart out....it does this mom.
I feel like I am constantly running to his side, holding his hand, through seizure after seizure all day long.
His worst seizure is the tonic. It has gotten stronger...the strongest I have ever seen it. It packs such a punch,
that as it grips him he is doing this gasp/cry, gasp/cry, several times... before the monster lets go of him..
and what was tigthened arms and fists, tightened legs and feet, become limp as noodle.His whole body becomes a rag doll. It is so extreme and so intense it sickens me. Then his breathing pattern change and he sounds horrible. In between those tonics, which he is having 6-8 a day (yesterday 3 in 1 hour!), he is jerking, and having tons of single myclonic jerks and spasms. Our days are filled with seizing, trying to recover, passing out, waking .....only to seize again...all day.
I took him too Children's last Friday, to pick up a Rx...I have emailed our Nero, I have talked to his nurse....on Friday she told me to come to the clinic....she hung out with Hudson and I for 2 hours and watched it all go down.....with each seizure and as more time passed she would call Dr. S and tell him what she was seeing. The end result was increasing his Zonegram to where we were before December and increasing the Vimpat 25mg more. So far...no change. I am suppose to call Fri. and let them know.
The next drug we may try is clobazam...I am sick of them all. Sometimes I wonder what Hudson would be like with out all 4 seizure meds....he is seizure riddled with them....but then he also has to deal with the effects of the drugs....dizziness, sleepiness, loss of vision, headaches....the list goes on....it's all a guessing game and it soooo sucks!!!!!!
In spite of the many grey clouds overhead....there are many rays of sunshine in my life....certainly the quiet, still moments with Hudson when there is a moment of peace, and I know that he knows his mommy is holding him.
There's the fun and pure joy Hunter and Hailey shower me with daily, the letter that came in the mail that said Hudson's denied PT would be paid...THIS time!!!
There are so many moments in my day where I know God is with me...guiding me....walking with me.....
I am trying hard in the midst of the hurt and struggles of life, to recognize that He will work it all out for good. I have to hold on to that.
I had a very hopeful conversation regarding Hudson....God is working on situations in my life....and the lives of the people I love.
Rays of happiness surround me through my friends and family....you all know who you are....and if I haven't been good about telling you....I adore and love each and everyone of you!
I have seen so many of my dear friends and family struggling too....with life.....it breaks my heart....
The truth is life is hard...really, really hard....I believe that those who know Jesus....this time here, living this earthly life... separated from him....this is our hell....this is the worst we will have it.....I am also learning I need to grow through all these struggles, I need to need Him and His comfort, I have to allow these hardships to deepen my faith and my relationship with the only one who knows and has the master plan for my life.
Living those words can be such a challenge....I fail so much.....
In spite of it all....I do feel joy....not always, but I love to laugh and have a good time....I don't ever want to stop living because of this disease and seizures. I refuse to let it rob me or my children....I try and take the sadness and hurts....work through it....find purpose and some kind of lesson through it....then find and feel the joy again. Some days it's harder to do than others.....but I always feel very blessed and grateful for the love of God and the love of friends and family in my life!
7 comments:
You know you are not alone and you are not failing. I think we all walk that fine line with our faith at times but you know we cannot stop believing because its who we are.
I hope that the meds will make a difference there is nothing worse than watching your child seize and it in a way sucker punches you because there is nothing you can do to make them stop.
There is a lot of our kids not doing the best with the seizure control these days. Finnian is sucking back oxygen like its going out of style and his seizures are all over the place I guess its time to do a medication overhaul well maybe it might work
Hang in there love and give all 3 of your H's hugs from us.
i have noticed you haven't been on lately. i'm sorry for all you are going through. life is hard... we just have to cling to Jesus! my prayers are with you and Hudson!
Yes, I noticed you hadn't been around. In fact, if it had gone another day or so I was going to email you.
I know what it is like to watch a child suffer. My baby suffers in a completely different manner than Hudson. I so pray somehow that God intervenes and gives him some relief.
No, you aren't a failure. You have so much on your plate. I have been concerned about your husband, too.
You're always in my prayers.
Thinking of you and praying for a seizure break for Hudson!
Jen
Great post!! Always praying for you guys.
(((hugs))) so sorry Debbie. I cant even imagine watching him go through all this, heartbreaking. I keep thinking one day they will nd the right meds, he will get some relief but he continues to suffer thru these seizure daily. Know Im thinking about you and I still want to get together AND Im not just saying that either! But I know its hard with our schedules. Ive been dealing with so much with my dad as well. BUT I do want to come and visit with you. Sundays work well for me, Jeff is home that day to take care of Jack. Let me know when its a good time for you. email me-
jhpierce3@comcast.net
BIGGEST hugs and always prayers for your precious boy.
Heidi & Jack.
I've missed you and I've thought about commenting, to see how you were doing.
Sorry life has been such a struggle! I hate that you are having to deal with such horrible seizures with Hudson! And, I wish that life would give you both a break from them...and all the other struggles of this world!
You are doing a fabulous job and you definitely deserve a break! Thinking of you and praying! Big Hugs!!!
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