Tonight I had a really sweet conversation with my six year old son. He was waiting for me to read him stories. As I was giving Parker his meds, Devin said "I wish Parker didn't fall."

I asked him if it was because he misses his playmate or if it's because bedtime take so long, or both. He said both. He said he wishes he could hear Parker speak and hear his voice, like his cousin that is the same age. He wants to hear his voice.

We talked for quite a while, and we cried together. I told him about the little girl that fell the same week that Parker did that did not survive, and how grateful I am that we got to keep Parker. And that I would rather have Parker with us any day, even if that means lots of therapies and longer bedtimes because of meds. Parker is sweet and happy and he loves his brother and sisters. Even if he can't ride his trike at the park.

I also talked to him about when he (Devin) was 2 years old and got really sick and I took him to 2 doctors and ultimately the ER. They gave him heavy duty antibiotics that did not work, and ultimately they did surgery. I was speaking to the surgeon after the surgery and asked what would have happened I hadn't brought him in. He said " he would have gotten sick enough you would have brought him in." He was sleeping 22 of 24 hours. How much sicker could he have gotten???

I am so grateful for the spirit that prompted me to go wake up my little Devin that day instead of letting him sleep. He was burning up and he pointed to his neck and said "neck hurt." There was a large bump on his neck and red lines and my mother's instinct said "hospital NOW."

The surgeon said if we had waited too long the infection (he had a retro phalangeal abscess) could have burst and spread to his heart and lungs and we could have lost him.

I was telling Devin just how sad and devastated I would have been if I had lost him 4 years ago and how much I love him, and how grateful we did not lose Parker. We were both crying.

I love my kids so much. And my husband. And I am so grateful for hospitals and modern medicine and that they have saved my 2 of my children's (and my husband's) lives.

I am so grateful.

Someone wrote this in response to a young mother's question on a CHASA (Children's hemiplegic and stroke association) Facebook support group that I absolutely love.

I love what this person wrote and wanted to keep it.

Paul Fulton

A few quick thoughts. Our little guy (RH) is now 8. The myriad of emotions that we have felt in the last 8 years are indescribable. We have gone from total despair to unlimited hope. We have blamed ourselves and we have recognized that we can't, only to return to blame ourselves again. We have never felt more weight as parents and we have never felt more joy as parents. Here's my point: Having a child with a disability is to be exposed to pure love in its raw and unmitigated form. To love someone so much that their struggles literally hurt you. To care for someone so much that all of your desires take a back seat to theirs. To desire happiness for someone so much that their success is continually on your mind. That's a gift (albeit, sometimes a miserable gift). We're all learning how to love purely and how to give entirely. Isn't that at least one of life's purposes? I think that I can also safely say that your little baby is going to surprise you and exceed your expectations over and over again. These kids have a fire within them that is like nothing you will have ever seen. It's inspiring to witness. It's so hard and so rewarding all at the same time. "That which we obtain too cheap, we esteem too lightly." You are a young mom 
who has learned at a young age to love entirely. Your baby is lucky to have you.

Parker just took 2 steps on his own. No hands. No gait trainer. With even less support than this picture. He is still so far from walking on his own, but this is HUGE!!! And it made me cry.

He also babbled a full conversion with his OT this week, and others, looking them right in the eye and intently babbling away in turns.

He also touched his speech program, Proloquo2go with only 1 finger-instead of whacking away at it. Which is also HUGE.

And he turned pages of a board book instead of eating it. And looked at the pictures with me.

This little boy amazes me every day.

Therapy buddies hanging out in the swing.

I sure love these boys.

We explored a new fabulous park last night. These pictures don't do it justice. As we crested the hill my son dashed towards it and exclaimed  "This is EPIC!!!" We played for hours.

 We tried mirror therapy in OT today. It helps to trick the brain into remembering that you have a right hand because you see both hands moving at the same time. He was funny and kept peeking at himself in the mirror or behind it.

We got a cat this week. She has managed to endear herself to all of us. She came over and snuggled with Parker and was so incredibly patient as he mauled her. This gives us lots of opportunities to teach "soft." He loves her and gets super animated when she is around. He's even been trying to say "ditty."

Mmmmmmmm corn.

There are so many fun lakes to choose from here! We have discovered the best way to make lakes fun is having one of these contraptions for his arm on hand. He eats EVERYTHING-be it rocks, sand, dirt, grass, clover, his shirt, your finger as you try to dig a rock out, your friend's finger if she forgets and tries as well...  this "no no" makes it so he can explore and play, but makes it very difficult to stuff handfuls of moss, dirt and sand in his mouth. Perfect!!!

Haircuts all around

We went to the amusement park in the Mall of America and had a glorious time. I snapped this picture just after we came down the plunge on the log ride. Parker LOVED it! We all did.

Minnesota is treating us well 😃

I really want Parker to crawl. His initial PT said that he might never crawl and would probably walk first because of the weakness in his right arm, but the only way I could get him to put weight in his right arm is crawling. And the first step to using that right arm is weight bearing. And I want him to use that right arm, despite the fact that his brain didn't think it exists. I am super motivated. He..... not so much. Recently (this week), things are finally getting easier with crawling.

Imagine trying to teach someone to crawl when he cannot hold himself up, or even put any weight in either arm, let alone straighten his right arm at all, cannot move his right or left leg and when he tries, his whole body goes rigid into extension and his legs shoot back, collapsing onto his tummy and you have to start all over, break the tone, wrestle him back into position... over and over.  It is a full body exercise and he is not the one exhausted at the end.

He slowly, very slowly, has been getting better. He has less tone (which is rigidity due to miscommunication from his brain) in his body. He can actually bend his knees. He has recently been putting weight in his right arm. Just this week, he actually moved his left arm forward, and his left knee now moves forward instead of shooting back, and occasionally I can block his right leg from shooting back if I position my foot just right to block it, and I think once this week his right arm actually moved forward. This is MAJOR progress and I am super thrilled.

I am a bit excited. Can you tell?

Most of the progress and breakthroughs have been this week. I was showing his occupational therapist the progress he's made and she said she lays awake at night thinking about him and how to help him. She wished there was some way to strap him to her to remind his brain the right arm/left leg and left arm/right leg pattern. (Did you know the arms and legs move oppositely consecutively- try it. It's true)

Before I left, we tested it and he fits perfectly under me... And I happen have yards and yards of Velcro from buying it online in bulk (see????I knew it would come in handy). The result????

Parker is doing really well- the best he has since his injury.  His surgery 3 weeks ago has been a huge success. (It was a third ventriculostomy where they went into the brain and made an opening in his third ventricle to remove some fluid and relieve potential issue on his hypothalamus) He is more alert, engaged, laughing ALL of the time, reaching further for toys and apparently he is rolling now.  We have been working on rolling for the last year and a half, and he's just... rolling now.  Last week he wasn't, this week he is.  Across the room, across hardwood floors, over blankets and pillows, into delicious cords...  soooo we have been doing a bit of baby proofing this week as well. :)

The surgery was interesting because it was a brain surgery, but it was sort of elective.  The neurosurgeon said "It could really help, it could do nothing."  I had so many questions and so many unanswered possibilities, but I went with my gut and my mother's instinct said do it. Darrell pointed out that this is the first surgery we've done that could actually improve things.  We felt good about it. so we did it. And of course not everything went perfectly, there are some random side effects that no one has ever seen before (of course) that may or may not be permanent.  He has nystagmus now- his right eye will twitch back and forth. But at the same time, I will take my happy, engaged delightful little boy who is making incredible strides right now.

My favorite story with his new "laughing ALL of the time" was last week.  We had therapy right after a doctor's appointment so we grabbed some food on the way.  I got a Chicago dog and got Parker a slice of pizza, but there was a bit of a wait so we did not have time to sit and eat. I asked his speech pathologist if we could do feeding as part of his therapy that day.  He made choices, tried different kinds of bites or chewing...the usual for feeding therapy, but he kept putting his thumb on the roof of his mouth.  Apparently the cheese kept getting stuck up there and he couldn't get it with his tongue.  It was soooo funny (you had to be there) so we kept laughing, and then he would laugh.  Then the next bite got stuck again and he just laughed and laughed.  Then the next bite got stuck and he laughed and laughed.  I really wish I had videoed it (I was out of space).  It was so sweet, delightful and HILARIOUS to watch. I love how often he laughs in therapy and procrastinates by giving hugs to his therapists. :)

Every day new things are happening.  Most good, some not so good (he is a lot more agitated right now and has bit several people in the last couple of weeks including my niece and both nephews and a few of his sweet therapists. SORRY!!!!!!!)

I have been reflecting a lot lately on perspectives when you come so close to losing your son. He is a miracle.  Hands down no questions asked. He should not have survived and most kids or adults
with similar injuries did not.  That is one reason why so many things and side effects baffle his doctors.  We truly don't know what we are going to get- what he will achieve- or what he will not.  But I know this.  He did stay and we did get to keep him.  He works so hard everyday to overcome incredible odds.  He surprises me and delights me and we are profoundly grateful for him.  Is it challenging? Absolutely.  Would I have it any other way? Not a chance.