Hope Writes Its Own Story

Oh, I've got it bad....today is an absolutely gorgeous day.

Well, we did not win the van.  That's okay, God always has a plan.  We ended up with about 5,700 votes which was phenomenal.  One girl had 122,000! If we try this again next year, we need to have a campaign and a strategy. 

Simon had a neuro appt last week. He's just doing so wonderfully well. I don't want to say too much    We don't go back for 6 months!  

School is nearly out for some of us.  Emily came home on the 6th and is working at Cornwell's.  Simon and the girls get done June 6.  Simon will attend school over the summer 3 days a week with a few weeks off here and there.  I am done the end of May.  I am so ready!  I will be working a few hours a week though. 

Simon is still working on sitting, chewing and bearing weight.  He's much easier to work with now that he's staying alert, but still doesn't want to do a whole lot    Why sit when you can lie down?  Wonder where he gets that from, ahem.  I'd love to see a big improvement in something this summer, but again, he's in God's hands.

http://www.mobilityawarenessmonth.com/entrant/gretchen-peters-marshall-mi/#.UWLxxLv3tX0.facebook

Can you vote each day for Simon?  Even though it's in my name (big oops on my part), Simon is the real hero!   If we get in the top 5% of the votes, we may be able to do this!  Please Vote EACH DAY!

xoxoxoxooxox

From the FAQ:

Making it into the top 5% of votes is the first step. The next step is where a panel of independent judges review all of the top 5% of stories with the most votes and from there pick the winners. The stories are judged on a number of criteria such, as is your story positive and uplifting? Are you inspirational to others? Can you travel to accept the prize?

It's like having a new boy!  He is doing so so so so much better.  He's eating and drinking well.  Talking, laughing and giggling!  I'm so happy and relieved. 

One side effect of the new seizure med is insominia and he's had that---awake until 2-4 am, but finally that seems to be turning around too.  All this week he hasn't awakened until noon, but this morning he was awake, by himself before 8:00am!  YAY!

He developed a rash that is likely from the amoxicillin.  It hasn't gotten worse so we're keeping our fingers crossed that's what it is.

Thank you immensely for your prayers and love. XOXO

If you are on facebook, you know we've been in the hospital since Sunday afternoon.  Simon was having a lot of zoning out/comatose type episodes, increasingly over the last 3 weeks.  Also, more breakthrough seizures.  We had done increases on two meds that didn't seem to help at all and we were scheduled for a 48 hour eeg to monitor today, but Sunday I couldn't stand it any longer and asked if we could/should bring him in earlier. 

So here we are, still.  I'm so glad we are here.  Simon has had a number of the same type of episodes since then as well as some other seizures.  When we got to the ED, the first thing they wanted to do was rule out infection, so he had a chest x-ray and a cath.  Turns out he had/has a urinary tract infection and a possible aspiration.  So, he's on an antibiotic for the UTI.  Just talked to the doc and they aren't concerned about the lungs...there are 3 possible reasons it looked like it did and 2 are benign and the third would be handled by the antibiotic he's on for the UTI.  They still seem a bit befuddled by WHY he's going into these episodes, but feel it may be because of the UTI.  Today for the first time, he's had breakfast AND lunch!  He's on an iv for fluids, which is good, since he doesn't really want to drink still.  Although this morning I got 6 oz in him!   

Soooo, there is still a mystery to why this is all happening, but maybe because of the UTI and where to go from here.  Oh, but they did switch out a med.  From Clonapin to Clobazam.    I do believe Dr. Hoban was leaning toward starting him on Clobazam anyway.    We have so many praying for him and I thank you for that!

What I Would Tell You....written by Julie Keon

I sensed someone watching me as I comforted my daughter after a particularly traumatizing dentist appointment at the Children’s Hospital. I looked up and saw you staring at us from across the waiting lounge. I didn’t pay much attention, as I have grown accustomed to the curious eyes of onlookers. Our daughter was born 7 ½ years ago and after an abrupt lack of oxygen at birth, she changed the course of our lives forever. Perhaps, our lives unfolded exactly as they were meant to — they just didn’t unfold in the way we had imagined or planned.

I talked to my daughter, kissed her and hugged her. I was giving her a brief break before putting her through the next traumatic experience of the day ~ the car ride home. Having cerebral palsy is the least of her worries but this condition can turn a car seat into a torture chamber.

I stood up to gather our things, my daughter in my arms, and it was then that I noticed you were holding an infant. It was difficult to know for certain how old she was. I knew immediately, though, that you were one of us. I knew that only recently your life had changed drastically and you sat here in this Children’s Hospital wondering, “How did we get here?” I should have recognized that shocked stare because I once had it, too. And I assume that the man sitting next to you, looking equally tired and shocked, was your husband.

I made my way toward the doors and as I passed you, our eyes met and I smiled at you. You smiled back and for a moment I knew that you knew that I understood.

If I could, I would tell you although you might not believe it right now, you will be okay. I would tell you to dig deep within yourself because you will find the strength and resilience somehow and it will surprise you. I would tell you to honour your feelings and let the tears flow when they need to. You will need the energy for more important things than holding in emotions.

I would tell you that the man sitting next to you might cope differently and he might even want to run the other way. But I would tell you to hang on because he is scared and he really doesn’t want to leave you. I would tell you to look after yourself so that you can care for your daughter. Don’t underestimate the power of good nutrition, exercise, sleep, supplements and an empathetic therapist.

I would tell you that grief will come and it will confuse you because how can something that brings such joy also bring such sadness? I would tell you to let people into your lives to help you. Our children really do require a village to raise them. Access all of the services and resources available. Find someone who can learn how to care for your child so that you can have breaks and so you and your partner can go on dates… even little ones like a twenty minute stroll outside holding hands, sharing wine on the deck or even catching a movie.

I would tell you that you know your child best of all and no matter what you are told by the doctors and other professionals who will be a part of your life, YOU know the answers. You will teach them about your child. At times you will question the validity of your intuition but after a while you will become profoundly aware of how accurate your gut feelings are when it comes to your child.

I would tell you not to be a martyr. Caring for your child will require tremendous focus and unimaginable energy and it can burn you out and make you sick when you least expect it. I would tell you to let your guard down along the way so that you can stay healthy in your mind and spirit.

I would tell you to seek out other mothers like yourself. This is, indeed, the road less travelled and you will feel very alone along the way especially in the company of healthy children and their parents. Yes, you will feel very isolated but know that we are here. Sometimes you have to look a little harder but we are here. You can find us online, in support groups and wandering the halls of the Children’s Hospital.

I would tell you that you will know far too much about the human anatomy, neurology, gastro-enterology, feeding tubes, pharmaceuticals, and so on, than a mother should ever have to know. I would also tell you to do some research to inform yourself but be very careful not to be overwhelmed by the internet and all of the information available to you. Having some trust in what your child’s specialists tell you can be very grounding. Other mothers and fathers of children like ours can be a wealth of information.

I would tell you that this isn’t an easy life. It is tough: there is no doubt about it but you are very capable and the rewards are great. You may never see your child graduate from university, walk down the aisle or give birth to your grandchildren but you will feel pure joy when your child laughs for the first time at the age of 3 years and 8 months. You will celebrate the moment when you connect with your non-verbal child. You will call your spouse at work to tell him that she has gained 4oz. because weight gain is always a struggle with our children.

I would tell you that you will have to witness procedures and surgeries and suffering well beyond what any parent should ever have to bear. But, I would tell you that you will be courageous and comforting because your child will be experiencing far more suffering than any child should ever have to endure.

I would tell you that your life will not resemble the life you had planned. It will be as though you landed in Holland instead of Italy but after some time, you will adjust the dreams you had and this reality will be normal to you. You will dream new dreams.

I would tell you that you might find yourself staring death in the face during close calls. You will be asked to fill out DNR (Do Not Resuscitate) forms and although you might make decisions to not resuscitate in the event of a cardiac arrest, when the moment arises, you will panic to think that it could all come to an end. And I would tell you to not feel guilty in the darkest moments when you pray to God to take your child if it would mean the suffering would end. This might horrify you but know that your love for your child is so great that at times you will believe that death would be a blessing.

I would tell you that others will not get it. They can’t. This is a very unique and complex journey on all levels. We cannot expect anyone to get it. And I would tell you that people — the cashier at the grocery store or your insurance broker or even your hair stylist — will say stupid things like, “God only gives these special kids to special mothers” and “God will only give you what you can handle.” You will nod and smile but eventually you will look them right in the face and tell them that those simple maxims are a bunch of bullshit.

I would tell you that imagining your future will be bittersweet and may involve a Plan A and a Plan B. Plan A will be what you will do if your child outlives the predicted life expectancy set forth by the experts and Plan B will come into play if they do not. You will catch yourself casually discussing your future with the code phrases of Plan A and Plan B.

I would tell you that grief will creep up on you after years have passed and you least expect it like at a wedding when the father and bride have their first dance or when you hear a birth announcement. It will also creep up on you when you see yourself in a new mother who is just beginning this journey.

I would tell you that you will recognize her because she is you from 7 ½ years ago. And you will want to run to her and hug her and tell her that everything will be okay. You will want to save her from the pain and the hardship and the unknown.

But I would tell you that when you find yourself sitting at the Children’s Hospital and you see a new mom and dad who are just starting this journey, you smile at them and walk by as they have their own path to travel and it will be different than yours. It may be longer or shorter. It may be more or less complicated.

I would tell you that her searching eyes are looking for some sign that she will survive this. And you, smiling as you pass, with your child arching all over your shoulder, will let her know that yes, she will survive this and may even thrive.

Julie Keon

June 29th 2011

If you liked this article, please consider sharing it with others.

I'm not sure we have anyone out there reading anymore, not that I can blame them.  For those loyal readers, thanks! 

Simon is 8 and getting so big.  He had his IEP yesterday and is doing well at school.  We adore his new classroom and teacher, Chris.  All the staff are amazing and love Simon.  Si swims 2x a week, does OT and PT.  They have a sensory room and an active learning room (think ball pits, big swings, etc).  His teachers and therapists have such belief in him and they work hard with him.  We're very lucky. 

Simon is staying healthy as well and growing like a weed.  He's almost always happy-go-lucky and is a smiler.

We have some fundraisers going on if you're interested.

First, our "Hope writes its own story" shirt fundraiser:

T-shirts:  $20.00

L/S t-shirts: $23.00

crewneck sweatshirts: $25.00

Hoodies: $32.00

Tell me what color you want, and I'll find it for you. (gertyp44@yahoo.com) Available in youth xs to 3xl  (limited toddler sizes and colors available as well)

Sales will close at the end of January.  Shipping will be an additional $5.00.  PAYMENT MUST BE MADE UP FRONT, PLEASE!

Hope writes its own story is a perfect motto for our journey since Simon was born. I wrote it when he was about two years old.

~~~~~~~  Also, I have a Superbowl pool going on.  $10.00 a square with half the proceeds going to quarterly winners and half to Simon's "Get Mobile" fund.

Funds raised will assist with home modifications which are looming and in the near future, an accessible van.  Both these will help Simon to live with us, in our home. He is growing so long and heavy, that already he's becoming hard for me to handle.  To participate in either, email me at gertyp44@yahoo.com

Thank you for looking.  PLEASE share as well!  God bless, and thanks.

I have been simply terrible about posting, haven't I?

Today Simon is 8 years old!  Eight years since those links up there began.  Eight years of learning about this world of special needs.  Eight years of meeting new people and having new experiences (some not so welcome!)

Simon has gained almost 4 lbs in the last few months and is about 43 lbs now and quite long.  He's getting harder and harder for me to lift and manueuver.  We have some hopeful news from the state about home modifications and hope and pray that something will happen in the next 6-12 months.

Seizures continue to be a nuisance for all of us.  Him having them and us dealing with them.  They aren't severe, but they are annoying.  Good health continues, thank God!

We are so blessed to have this little boy in our lives. I get plenty frustrated and upset with him at times, or at the situation, but the blessings, joy and love he brings is more than worth it.

Happy 8th birthday, little love!

I meant to post this months ago when Juliet wrote it.

We were so lucky to meet Juliet, Jason and Lucia at our conference in DC in June.  Juliet posted this on her blog right after and it is so wonderfully said that I must share it.

Imagine going on a trip where you are going to meet over 150 people that you have never met- people that have come from all over the world to spend just 3 days together.  People that come from every background, ethnicity, age, and walk of life.  

Imagine seeing these people for the first time and being greeted with a hug. A hug that is long and sincere and loving, like a long lost friend. Imagine coming face to face with these strangers and immediately having a connection, an ease at conversation, no ice to break, no awkward silent moments. 

Imagine over forty severely disabled children, most in wheelchairs, nonverbal, unable to feed, bath, toilet or even hold their heads up themselves. Imagine introducing your disabled child to these people you have just met, and they immediately want to get close and love your child, unconditionally.

 Imagine these people wanting to know about your lives, your child's life, the good and the bad, without any sugar coating.  Imagine these children surrounded by ordinary parents, ordinary siblings, in an ordinary hotel setting. Imagine love, light, and happiness to just be. To just be with each other, to feel safe, and proud and happy.

That moment happened over and over again in the middle of a hotel lobby, in a dull conference hotel room, in hallways or rooms of a hotel...it was not the hotel it was the people, it was the kids.  Going to the PKS Kids Face2Face Conference this past weekend was all of those things and more.   We loved on other children with PKS, Lucia was overly loved, we talked, we learned, we laughed, and we were lifted up and given an outlook on how our little Lubird may grow.

Continue reading....

Yep, Simon's back in school...it's so good for him!  We're having troubles with his drinking lately--the only thing he'll drink is pediasure.  Kind of confused as to why and think he may be having a "toddler" moment, where he'll only eat/like one thing.   His seizures continue even though we just upped the dose of Lamictal. 

Oh, stay tuned!  In October I'm doing a fundraiser for Simon and you're going to LOVE IT!

Please take a few minutes and watch this beautiful video.  Thank you   (I tried to embed it and it didn't work, sorry)

http://youtu.be/iZ78gHne0LM ;

Well, we have been busier here than I've shown.  Let's go from most recent.

Right after I posted about the iPad contest, while a fundraiser was set up by a friend of mine, we learned that an anonymous angel had purchased an iPad for Simon.  It was absolutely amazing!  He is having a blast with it too.  We've downloaded several free and lite apps for him--mostly ones that engage his vision.  A few times As I've been working with him--I've felt him put pressure on the screen with his hand/fingers to make the colors change on the screen.  I know it will only be good for him and I am enormously grateful for Anonymous and their blessing to us.

  Simon, Natalie and caregiver-Katie playing with it.

In May Simon got a new wheelchair.  It was his first one since his original KidKart he got when he was 18 months!    His new one is snazzy red and black and it's a Freedom NXT.  We like it a lot so far, except 1) it's heavier than the old one and I can barely lift it into the van and 2) when the seat is tilted back, the handles are quite low to push.  They gave us some longer canes, but they didn't really do the trick.

Simon also has a new caregiver.  Mara moved to another city at the end of May, so we had to let her go    Katie has been with Simon since then and is a great fit for us.  She really works hard with Simon and we're so glad to have her.

Face2Face 2012 is going to have to be a seperate entry.  TOO much to say!  Just know it was a wonderful time and well worth all the work we did!

I don't think I mentioned Simon's Make-A-Wish hot tub!  We got it last November and holy moley is it great for him!  HE LOVES floating around in the water.  He was in again last night and Maddy said: "He was so cute he started laughing and then started kicking so he kinda swam around the hot tub :)"   We are so thankful for Make-A-Wish and all they do.  If you want an amazing charity to donate too, consider them.