Little Loners

So these are my kids and although I have moments where I wonder how I am going to get through- most of the time I am just in awe of what remarkable people they have become.

I am 5'10"
Jerra is at least 5'11"
Josh on the left is 6'1"
Jake is leaning in on the right - he is 6'31/2" as of this week

I love this picture because the boys seem to dwarf Jerra- which is so weird because she had been taller than them forever - and now a few hormones and viola!

AMAZING- BREAK THE RECORD DAY!!!

It is with a humble heart that I tell you that today is BREAK THE RECORD DAY!!!!

We went to Cleveland Clinic 6 weeks ago, and as of TODAY Jake has gone over 6 weeks without a seizure-breaking our previous record which was 1 day short of 6 weeks. His medication is working! We are well on our way to the 52 weeks that he needs to get his learner's permit - which in his view as a nearly 16-year old, is probably the most important thing ever.

Cannot begin to express how very thankful I am. Honestly, I can tell you that this is not my best literary work because I am just to darn elated to worry much about how it sounds. The happiness feels like it is pouring out of my fingers and the grin on my face like a Roman Candle on the Fourth of July!!! Lord help the souls I see today, I am giddy as a schoolgirl and will be intolerably happy ALL DAY.

I am eternally thankful that the Lord has kept His promise when He said He had plans for us,plans to prosper and not to harm us. I am thankful that He still loved us when I lost it there in the hospital room and said some choice words to Him. Forgiveness is a powerful entity. I am soooo thankful to those who have prayed for us- complete strangers who lifted Jake up to Our Father in prayer, asking for healing. Thankful for the man, whose name I don't even know, who told his Rosary Group that he was praying for a total healing for Jake-his prayers are being answered. Thankful for those people who thought of us, sent us notes, gave us hope and something to believe in when it didn't seem like there was much to be thankful for.

I am thankful that He has seen fit to allow us to start back to a normal life again- a life without the fear that totally without warning, Jake will plummet to the floor and start seizing. We have lived with almost 2 years of unpredictable seizures, having the confidence that he can make it more than half an hour without us checking on him has been so liberating for everyone in my household. I cannot express the joy and hope that come along with seeing him thrive and actively work on getting his life back to a NORMAL teenager's life.

In celebration, we are headed to the Golden Corrall for dinner- for those of you NOT hosting teenaged boys in your house, it is an all you can eat buffett with tons of good food - and lots of desserts that I just don't keep here in the house- so Jake will be in Heaven.

It was that nagging voice in the back of my head, which is the Holy Spirit at work, which prompted me to take him to Cleveland, spending money we didn't have to get there. And as usual, the Holy Spirit provided understanding of the situation and a clarity that I didn't posess.

I am so extraordinarily blessed to have Jake as my son. His gentle spirit and willingness to help just astounds me. Sure he has normal teenaged moments, but overall, he is just a joy.

He has decided that he would like to go back to High school now, a big shift in plans as we have been preparing him to take his GED in a couple of months. He wants to play football- The Replacements, The Blind Side and about a dozen other football movies have occupied his attention of late- and at 6'3" 260# it seems like a great outlet for him.

However this whole epilepsy situation plays out long-term, I for one am thankful that for today, we are seizure free for 6 weeks! Thank you, Lord from that place in my heart that You know is true.

I know the plans I have for you

It has been over a month now since I took Jake to Cleveland Clinic to evaluate his epilepsy. Surgery was denied, my heart was broken for him, and yet in the midst of that there is always hope.

Last Saturday, while watching Notre Dame play he looked over at me and said " I really miss playing football".

and my heart fluttered a little bit.

and I thought about what it would be like to re-enroll him in high school
and what a royal pain all that was for me
but how very much he loved it.

And the answer just came out of my mouth: well, if you want to go back and play, we could make that happen.

Jake is in the midst of his growth spurt- at his last visit with the neurologist two weeks ago he was 6'3" and 260#. He is a massive human being - perfect size, though, for a lineman or any other Paul Bunyan sized job you might need done.

Back in June, he was in the pool and had a seizure as he was coming out of the pool. Our friends, Nick and Jim Auby happened to be at pool right as it happened. Jake, being a substantial person who was now dead weight, needed to be pushed and pulled out of the water. Thank God that Jim and Nick were there to help Brady and I get him out of the water.

The beauty of this possibility is that if Jake were to go back to school and play ball, he would be an offensive lineman responsible for protecting Nick Auby, who will be the quarterback in the same age-group. Seems only fair, doesn't it.

So then there is the question of letting someone with epilepsy play football- I googled it- there are about a dozen pro players who have well controlled epilepsy- and tons more who play high school and college ball successfully.

We have had a month without a seizure- and he feels good - and he is sleeping well- and for right now, he has the potential to get a normal ( thought well medicated) life back. Makes sense that he would want one.

There is a passage in Jeremiah that I have thought of often during these days of uncertainty: I know the plans I have for you, plans to prosper you, and not to harm you, plans to give you a bountiful life and a future. Those words give me comfort - and in the -past couple of days as I am thinking about sending him back to school, I wonder if this was perhaps the plan all along. We shall see.

Michael Finnegan

Do you remember the song about Michael Finnegan - he had whiskers on his chin again??

The chorus always said: Poor Old Michael Finnegan. Begin Again!

While I cannot take credit for this piece of literary genius, I certainly get the sentiment.  The same thing keeps happening over and over again - and you have to begin again over and over again. A bit monotonous, really.

Beginning Plan B all over again.  This includes training the seizure dog to get Jake more independence, applying for Disability and Medicare, joining the local epilepsy foundatoin, coaching for GED testing in November and most importantly, trimming the dead wood from my life so that I can get focused on Jake and getting his life launched in the right direction.

New meds were started on Thursday afternoon- and despite missing a dose this morning and an erratic sleep schedule, there have been no seizures.  Miracle of miracles.  This medication just might do the trick.  Ask me how I like it 6 weeks from now.

Again this weekend I talked to the adults in my household about getting gainefully employed.  This was followed by my promise to have EVERYONE up and moving before 9am and with the admonition that by the end of the month, I needed fiscal responsibility.

I need to get some things listed on Craigslist to get more positive cash flow - and tomorrow, before heading to the pool for sun and fellowship, I have to spray the yard for fleas again. 

Tuesday I will speak with the lady at our new church and help to coordinate an education program for people with chronic illnesses as a part of the health ministry. Looking forward to doing this in a local setting with the same people I see in the grocery store.

We have resolved the house cleaning issue satisfactorily - so the woman with the full-time job does not do all the housework as well - much better.

And finally, I concluded this week that ever since I decided in 2000 that I could raise kids and have a romantic life, things have gone awry.    I have been praying for God to bring me a man who loves Him and who has a good spirit and a good heart. Haven't gotten a man like that who loves me back - though I know it is possible - just had a couple like that who have left just like everyone else.   I am not feeling sorry for myself, only wistful for the longing of my heart: to share my overflowing heart with someone who won't cheat on me - won't lie to me about the important stuff - won't be afraid of accepting love in return.

And so, this last item on my list, is to drop out of the miasma of dating and thinking about love- and drop back into just being someone's mama.  Begin again the path of focusing on my calling. After all, that is what I am really good at anyway.

Peace Descends Again

Sometime while I wasn't paying attention, peace has settled back in. I missed it. We used to be such friends, but over the past month, we haven't been talking much because worrying and anxiety were taking up all my time. But I have asked God to escort them out the door - and now peace has descended again.

I worked on the Confirmation Retreat and even got the situation at my former parish resolved- or rather I resolved that being upset with the way people behaved wasn't helping anyone, so I went back to being involved in the Confirmation Ministry. I dreamed about it and realized that I was saying "no" out of pride. So told the Youth minister that I am all in - and it felt really GOOD.

After Mass, Father had offered to give Jake the annointing of the sick - where the holy oil is used to bless the hands and head and heart - and special prayers are said asking God to grant healing as well as asking Him to forgive sins and give Jake a clean soul. I know, that is a LOT of work for a little bit of annointing oil! After Father was finished, Jake rubbed it over his scar and into his hair, using the green oil on his palms to coat those places that need the healing the most.

The amazing thing about the oils is the way it smells - like heaven- like purity - like love - I don't know how to describe it. It is like the scent of something holy and lovely and it catches me by surprise even these hours after the annointing. I am still open to the "poof" miracle - anytime now Lord that you want to do that would be fine.  But I am confident in our future - and confident that He is watching over us- and everything will be just fine.

Epilepsy and August 30th

That is the day we start our journey toward curing this epilepsy.  Cleveland Clinic set the appointment yesterday for brain mapping, a PET scan, neuropsychological testing, and a video EEG which will induce seizures and carefully map where they originate from.  Most of me is very excited about the possibilities, I have the disadvantage of having gone through this once before. There is a part of me which is really scared for selfish reasons.

When Jake was 18 months old, he started having seizures.  He would get this look of terror on his face, then turning blue, drop to the floor and stop breathing.  Sometimes he would start breathing again on his own, sometimes I would have to start rescue breathing after 3 minutes.

 The first couple of times I called the paramedics.  By the time they got to the scene 10 minutes after the seizure had started, he was sleepy but his vital signs were good.  I remember after a particularly long seizure where he planted his little face into my hardwood floors that I took him into the ER myself, flanked by Jerra and Josh.  The ER physician looked me straight in the face and said that maybe I was just overreacting and that he didn't look like a child who had seizures. ( apparently, those children have a big red "I have seizures sign on their foreheads" which we were lacking). I felt dejected and silly- but at the same time angry.

Then began a year and a half of trying to take time off from the job that was paying all of the bills to go down to Riley and get testing done and see the Neurologists. I cannot figure out, short of divine providence, how I was able to afford all those trips on the meager salary I was earning as a public health nurse.  I think I have blocked out the number of sedated tests that were done after an IV was started and we had endured his pitiful cries for us to stop.  It was horrific.

A miracle happened after one of the dozen CT Scans of his head: a radiologist stopped me in the hallway and said that after we got the seizures under control, we should see an ENT  get his nasal polyps removed. 

It was another 6 months before Dr Berner, who I had worked with in the ER, looked at Jake's nose.  Pardon the language, but "Holy shit" was his first response to what he saw.  There was a huge mass of tissue in the left sinuses.  He sent us for a CT of the sinuses and said he'd call me on Tuesday.  Late in the day, in the middle of our immunization clinic, he called, saying that he had just gotten off the phone with the neurosurgeon and that we would be sending Jake to surgery to have the tissue put back in place and have the hole repaired.   My work-partner made me sit down as I repeated the words.

I struggled with whether to even call his dad, since he hadn't seen him in over a year.  My father's advice to be Christlike in my decision overtook my anger and I called him, bringing him up to speed.  His father and his new wife accompanied us on the day of surgery. He has been diligent in seeing his son ever since then.

As it was explained to me later, there was a part of the brain which had formed outside the protection of the normal cavity.  Should Jake get hit in the nose, this mass would open, and he would lose consciousness and die.  For the following weeks as we got ready and donated blood  I was scared to death that something would happen to him.  I can only say that his Guardian Angel was very tired trying to keep him safe.

The worst part, and the part I hate to go through again was the waiting.  My folks kept the other two kids, and my friend Skjeie sat with me throughout the surgery.  It cannot have been an easy task and my fear came in waves and I counted the minutes that he was in surgery.  It lasted more than 6 hours.  That is a long time to sit with a mother who is a little panicked about the state of her child.  Skjeie will always hold a special place in my heart for the kindness he showed me that day.

In the days that followed there was pain that I couldn't explain to him, swelling all over his head and face and the stares of everyone who passed us as the 56 stitches looked like a black tiara across his head.

Can I just say that I would probably feel better about this if it was me, instead of him?  I remember thinking about the fact that God gave up His son- that He understood my pain and my fear  - even though my scenerio paled in comparison to that of the Crucifixion.

We went for 8 years without seizures until one night, about 3 months before we left Indiana, Jake had another seizure and it started all over again.  He was 11 - so for 3 years a single medication taken daily eradicated his seizures. We think it was all the growth hormones which triggered the seizures and made the medication ineffective.  He has put on close to 100 pounds and almost 9 inches in the past year.

Then last August, he started having them without provocation, when he was studying, when he was walking in the woods, swimming, waiting for icecream at the restaurant,cleaning his room,  while riding in the car, at a funeral just sitting, and even playing cards.  There has been no rhyme or reason.  I know that God only gives me what I can handle, but the unpredictable nature of these made me feel entirely powerless.   It has been the most awful experience. Jake is under constant supervision and is subjected to Jerra and I checking in with him all the time.  He cannot get his driver's license, he cannot just head off to the movies, he cannot go for a bike ride. I had resigned myself to staying single the rest of my life as someone would need to live with Jake.  It is a tough existance for him. He takes medication every 4 hours during the day to maintain high blood levels, but on the two occasions that his meds were a couple of hours late, he had a breakthrough seizure. 

I was worried about going through this alone.  I think for some reason I believed that I needed someone to love and comfort me through this.  I was reminded this morning that while having someone with broad shoulders would be great, it is a want and not a need.  The real truth is that the Holy Spirit will bring me comfort, my friends will be there for me, my family will stand shoulder to shoulder with me as we wait upon the Lord to heal Jake.

God has blessed him with a sturdy body - which he has needed since the seizures cause all of his muscles to contract and leave him exhausted.  He will be healthy before the surgery and there is the great possibility that he will be totally seizure free after the surgery.  How could I say no to hope?