I won’t lie, having milestones come so slowly is maddening, but it comes with a gift…with many gifts. The most obvious gift is patience. It is a gift/lesson I need repeated. It sticks longer each time, but having ‘Buddy’ in my life gives me lots of opportunities to practice.

The second gift that comes to mind is, understanding. Understanding just what it takes to make these milestones. Some days it is like watching the world through slow motion. If I slow down and really watch, I can see the neurons fire, the understanding click into place and the first tiny steps occur.

I did not come to this gift on my own. We have been lucky enough to have some incredible therapists in ‘Buddy’s’ life. One of these is Gay Lloyd Pindar. We lucked into a study she was doing that involved Triadic Eye Gaze, or using your eyes to choose a toy by looking at it, and then to the person holding it as if to say “yes, the ball in your right hand, I choose that.” At the time ‘Buddy’ was very low tone and spent most of his time in a tumble form chair watching the world go by. He was 10 months old and had never picked up a toy and brought it to his mouth. Honestly, it was very hard to play with him and was very excited to watch the people in the study and learn how to draw him out. The first day they came to do the intake they said he would need a positioning consult with Gay Lloyd. I had heard of her and was very excited to meet her.

The next week Gay Lloyd came and I met her for the first time. She came straight in and got down on the floor with ‘Buddy’ and had an instant connection with him. After 5 min, she changed the angle of his chair, and put a Boppy on his lap so that it supported his elbows like a desk and handed him a toy. He immediately brought it to his mouth. I was stunned. I nearly cried. It was like she was magic.

I have since had the opportunity to work with Gay Lloyd, Mechthild Rast and many other amazing therapists, and I now realize that they are slowing down and really seeing everything. That is where the magic is. She looked at ‘Buddy’ and saw how weak his muscles were, knew how the muscle structure worked and was able to find just the right spot to give him support without doing the work for him. They taught me how to watch his every move and tease out his goals and his obstacles so that we can work on overcoming them together. It is slow and painstaking, but it is magical too. What an incredible gift to understand just how many muscles have to work together to merely lift a toy. To work for weeks on those muscles, and then to see him do it!!

That is the best gift of all. The intense joy of achieving these hard fought victories over seemingly everyday things. Sure some days I wish things were easier for him…for all of us. But I also look at ‘Buddy’ and am truly amazed at his strength, his determination, and his ability to overcome. I truly appreciate him and what he can do. I know his for his strength and his heart. I love him deeper for every struggle. That truly is a gift. I get to watch my butterfly unfold in slow motion and relish each wrinkle opening.

A while ago my son had a bad cycle of seizures. There was one that happened while I was at the grocery store. ‘Buddy’ was home with Beatrice a friend/babysitter/med student (we Love her). I was just about done shopping. I was talking with the cashier as he began to check out my items, when my phone rang. It was Beatrice. 'Buddy' was seizing. She had called 911, and was administering the second dose of Diastat to rescue him from the seizure. It finally stopped at 15 min.

I apologized, left my groceries on the counter, and ran to the car. We ended up in the hospital overnight.

A couple days later on a Saturday, I tried again. My husband was home with ‘Buddy’ and my sister came with me to the store. She drove. As we came down the hill to the store I felt my pulse quicken. My throat thickened and swallowing became a conscious effort. My head felt buzzy. I took a deep breath and laughed. My sister asked me what was so funny. My answer was PTSD. I was laughing because I was really glad I had written a blog about it. Doing so made me aware of it. My awareness allowed me to take a deep breath and take control of my body back.

It was a very odd trip through the store. Every time I reached up to an item I had the same dialogue in my head; “I need eggs. No, you got eggs. No, you put eggs in a cart, but they did not go home with you.” “I need cream. No, you got cream. No, you put cream in a cart, but it did not go home with you.” It took so long to make my way through the store because of all this back and forth triple checking. I was so glad my sister was there to help me laugh about it. I think it would have been very scary to manage alone.

Then, half way through the store, a woman accidentally walked off with my cart. Internally I completely panicked. “NO! Don’t make me go through all this again!!! I can’t do it!!!!” I managed to calmly say “Hey, that one is mine.” But I wonder if the terror registered in my eyes, because she was profoundly apologetic. Again, so glad my sister was right there so I could tell her about my panic and disable it with laughter. I got through the trip and restocked my fridge, but honestly, I held off as long as I could before going back. I even thought about having it delivered. I didn’t. I worked my way through instead.

I do find the story interesting though. I enjoy telling it and marveling at the way a persons body can sometimes take control...or try to.

It has been a hard month plus. A crap spiral really. Sorry for the language, but it is true. The worst of it was two weeks of seizures every other day (spurred on by ear aches) that lasted 8-15min with rescue meds, and dislocating my knee cap while attempting to administer said rescue meds in a timely manner. This is only important to this story because of how it intensified the depth of my feelings of love and appreciation.

Several weeks ago, after a week of seizures, we were at a BBQ with friends, when someone asked what our plans for the summer were. Due to the seizures I said, our plans were to stay close to home. We planned to get a swing set and make our yard a destination for ‘Buddy’. Little did I know, Cole and Carson were listening. They are children of a dear friend and have loved and supported ‘Buddy’ since the beginning. (They they were little and visiting they would say “Mom, I washed my hands, can I pet ‘Buddy’ now?” I love that.) Well Cole and Carson had a swing set they no longer used. They had been trying to decide what to do with the money once they sold it. After hearing my conversation, they discussed it among themselves and went to their mother to tell her they wanted to give the swing set to ‘Buddy’. I tear up every time I think of it. It is so wonderful for them to give like that, to know that ‘Buddy’ has touched their hearts so deeply.

As an ex stage hand, I have overseen many moves and moving the swing set would be very straight forward…except, I wasn’t sleeping enough to think, ‘Buddy’ was too exhausted to go anywhere, and then I injured my knee and I couldn’t even walk. Enter my buddy Steve. As a diabetic he is tirelessly raising money for Diabetic research. Currently he is renting himself out for donations, and my mother bought two hours of time for me. When he saw my call for help moving the swing set on Facebook, he stepped up and took charge, helping to rally the troops, find a truck and organize the logistics. Friends came out to help, some of whom I hadn’t seen in years.

We met at 11:30, and they had it dismantled in an hour. We loaded it up and after stopping for lunch got it home and set up in just a couple hours…with no extra parts! It was so hard to sit and watch instead of helping, but knowing that the project was in such good hands really helped. The best part was the moment it was done ‘Buddy’ grabbed onto one of the rings and took 3 steps away from me!

I am so excited at all the therapeutic opportunities that this swing set will bring for ‘Buddy’. He is so close to walking on his own, I really think this will help him get there.

A week ago, I was home alone with ‘Buddy’ feeling isolated, me trying to get him to eat, him refusing, and both of us so frustrated. I really felt in that moment like I was the only one trying to keep him alive, ‘Buddy’ included. I actually told him “I can’t eat for you, you gotta help.” Well, today I know we are not alone. I know there is an army of friends and family out there rooting for him, for us, and it means the world. My heart is full to bursting, and I cannot thank any of you enough.

Oh, and if you would like to help my friend Steve raise money to find a cure for Diabetes, you can do so at:

http://main.diabetes.org/site/TR?px=6789803&fr_id=9403&pg=personal

I am walking with my son. It is early evening and the night air is cool and soothing on a fussy boy. He has gotten so good at walking. He holds my hand and turns his body this way and that to direct our motion. He is so close to walking on his own. Often I only offer one hand, just to let him know he can do it.

He has had his bottle on the deck and my dinner is waiting inside. We walk together through the door and I feel him turn to go back out, or so I thought. I look down and his head is thrown back, his eyes a distant stare. “Crap! Seizure!” I yell. My husband races the diaper bag to me. He pulls out the diastat, while I set the timer on my phone. We whip down his shorts and diaper to administer the diastat.  Then turn on my phones video so I can show his neuro team the seizure. 1 min 30 sec.

He has only had one seizure in two years, and he is outgrowing his dose of diastat. We know we may need a second dose. He often needed a second dose even when the dose is right. On top of that we are visiting family out in the country, two hours and a ferry ride from home, from our hospital…watch for blueing. “Breath baby, mommy and daddy are right here. You just keep breathing.” Sometimes his diaphragm seizes with the rest of him and his oxygen levels drop.  All of this is racing through our minds. Some of it we say, some of it we just know. The clock on my Iphone spins out time in slow motion as my son flies through his seizure in a superman pose.

Around 6 min, his pose shifts. At first I am relieved. I think he is coming out of it. Then I am terrified. It is intensifying. His expression makes me think of a death mask. “call 911!” I yell out. I can’t remember if we have seen this before. We are so isolated. What if he needs more than we can give? I almost give in to panic as my husband gives the second dose of diastat. We need to shut this down. There is no phone to call 911. That brings me back. There are things I have to do. I flip my  phone from video to phone and call 911. “4 year old child with intractable seizures, some blueing please come quick!” Flip phone back to timer, 7 min

Once the paramedics come they are going to want to take him somewhere. I need to pack. We are here for the weekend and we are spread out. I make sure my husband is settled with my son. I tell him what my intention is, and I begin to throw things into bags. I run to the little guest cabin and hear the sirens, so I run past out to the highway. Everyone misses the turn off. There is no time for them to miss it. I flag them down and run them inside. We are approaching 15 min the seizure is loosening, but his eyes are still non responsive. I leave my husband to manage the paramedics and run to pack. My mother in law and a couple friends join in within a half an hour we have packed and loaded what it took me 4 hours to pack the day before.

I go back inside, the seizure stopped at 15 min. The paramedics are listening to his breathing to make sure he did not aspirate. We discuss the route home and how to negotiate ferry lines on Memorial Day weekend. We thank them and load “Buddy” into the car. The crisis is ebbing now. We still need to get home. I sit in the back holding his head in his carseat so he can breathe fully, and we drive in silence. Adrenaline is slowly coursing through our system. Some of it draining out and some of it going for a second round because we dared to think about the events of the last hour, the last 4 years, or God forbid the future.

We arrive at the ferry, get pushed to the front for medical reasons, and get home quickly. Thankfully. And he sleeps. My little puddle of son, my “Buddy” sleeps for the next 12 hours. We do too. We know we will need it, because to anatomy of a seizure does not end with the seizure. In some ways it begins there. “Buddy’s little body just ran a marathon in 15 min. Every single muscle in his body was clenched as hard as possible for 15 min straight.

Day one post seizure he wakes and seems okay, tired but happy. Every time I am lulled into thinking we are done. Then it is time to eat and he won’t. He bit his tongue and it hurts. I struggle to get enough food into him. Mid-day, the exhaustion catches up to him. The muscles start to ache. He want to pull to a stand and can’t. Worse, he does not understand why. This is when the whining and crying begin. He is so frustrated and tired and confused and probably scared. I do my best to comfort him, to give him Tylenol and Naproxen to manage the aches. I rub his muscles with arnica. I hold him. He sleeps, a lot.

Day two it really hits. He wants so badly to get back to life. He wants to stand at the sink and play in the water and ‘help’ with the dishes, but he is not so stable on his feet. He cannot hold on with just one hand anymore. He has to be careful. Almost falling scares him as much as falling. He wants to play not nap, and is mad that his body won’t do it.

This pattern continues like ripples on a pond, until it dissipates a week to a week and a half later…unless he seizes again. This week we have had 4. There have been times in his life when he had up to 15 of these in one day. No wonder the little guy could not pick up a toy and bring it to his mouth. He was exhausted.

I have never been much of a church goer, but I am praying, every day and with great earnest. I really need there to be someone who can help, because I feel so helpless. My mother told me she is praying to her mom. Granma was a feisty woman who took no guff. She worked in the church and was a firm believer. My mother said she figured if anyone could get things done up there it was Granma Marg.

Please God, help my little boy. Granma, if he is busy, can you make sure he hears? I don’t want to watch my sweet, shiny little boy disappear.

I read an article a couple weeks ago, and it really hit home. It was about PTSD in kids and families with cancer. My blog has been quiet this winter, because I have been struggling. That seizure threw me for a loop. It threw my husband for a loop. We both had flashbacks of seizures, ER trips, tests, a listless baby boy, fighting for hope in the face of hopeless test results.

“Buddy” is doing great. He is so close to walking. He is starting to notice the world around him more and more. His communication is developing. I should be sky high with excitement. But that damn seizure scared me to death. I don’t want to lose him. I don’t know what I would do without that smile. I want him to survive and thrive and blow everyone’s mind with all he accomplishes. I want so desperately to be a happy carefree family playing at the park, laughing together. I do not want to know how close death is at every turn…but I do, and I must find a way to reconcile that. I have to somehow find a space in my life for death, so that I can truly enjoy today, this moment. I don’t know how. I wish I did. Denial doesn’t  seem to be a long term answer. I guess I will have to search for a better one.

We have been working our way back onto stable ground. It really is true what they say: “The first step to solving a problem is identifying it.” I knew I was off. I knew the whole house was off, but until I read that article, I didn’t know where to start to fix it.

Unfortunately, I cannot find that original article, but I did look up symptoms of PTSD symptoms at http://www.ptsd.va.gov/public/PTSD-overview/basics/symptoms_of_ptsd.asp .

1. Reliving the event (also called re-experiencing symptoms)
• There are certain sounds that ‘Buddy’ makes, movements, positions, and expressions, which send my heart racing. As a family, we have to be careful how we respond to shows we watch. Exclaiming almost anything out loud can often trigger the other person and send them running to see what the problem is.
2. Avoiding situations that remind you of the event
• Seizures are definitely that elephant in the room. Sometimes it feels like a herd of elephants. Every decision is impacted by the unknown that seizures have brought into our lives.
3. Negative changes in beliefs and feelings
• It is so hard to feel safe. I love ‘Buddy’ with all my heart, but I do so knowing that friend’s children have passed away from SUDEP, or Sudden Unexplained Death In Epilepsy. Not knowing what the cause of ‘Buddy’s’ seizures is means we have no way of knowing, for good or bad, where our road may lead.
4. Feeling keyed up (also called hyperarousal)
• Sleep is a struggle, and not always because of ‘Buddy’ waking. And no cold or illness is just a cold, or just an earache. Too many times they have led to something worse. We went into the doc recently and I asked about ‘Buddy’ hitting himself in the head. It turns out it was an earache, but at the time there was a subtle inference to how complicated he is, and that we should be on the lookout for something bigger. She was afraid that some new kind of seizure happening. Instead he was just trying to show us where it hurt.

All of this leaves us roiling. Some days are fine. I can watch him and be filled with amazement at his accomplishments. Other days I am terrified. Will he be okay? Will I have the strength to keep up the fight? Will we as a family? There are sooo many rabbit holes I can fall down. I work very hard to stay in the present, and see all the amazing small steps. Like yesterday ‘Buddy’ was holding Daddy’s hand on the right, and my hand on the left, as we walked together through the park, when a child rolled passed on a Razor. ‘Buddy’ was fascinated. He could not take his eyes off her. He saw her! He was thinking through what she was doing and digesting it, you could just tell. I told him, “You can do that too one day. First you need to figure out walking, then we can work out the Razor.” We all have to have hope, and goals.

I just have to sing the praises of a new product. This is the best Sippy Cup ever! ‘Buddy’ is getting to an age where he really should be drinking for a cup, and people are starting to notice. He gets looks from adults and kids wondering why he is still using a bottle. I know, it is none of their business, but that doesn’t stop the awkward moment when you catch them staring. I have tried sippy cups of all kinds. I have tried straws. I have tried regular cups with some success, but he likes to shake the bottle/cup and that gets messy anywhere but the back yard. And then there is the spinning. ‘Buddy’ loves to spin Everything! You should see the spin art I have found on my floor. Honestly I should take pictures and mount an exposition of his genius works of formula art. This cup fixes all that. I am serious!

With the Wow cup, he can hold it one or two handed, bring it to his mouth, drink, even shake or spin  and no fluid spills. Not true for bottles or other sippy cups. Unless he decides to arc it out of his mouth like a little cherubic Italian fountain, but that is another matter.

Here is how it works…first the entire lid is a valve. No matter where on the rim you put your lips you can suck in and get fluid. The gasket easily pops out for cleaning in the dishwasher. The cup is small enough to fit his little hand.

Besides helping with mess and appearance it is also helping with oral motor skills. According to Occupational Therapists we have worked with, the muscles built up sucking from a bottle are very different from those used in drinking from a cup. I am told that down the line this will help him with eating and speech.  The specifics are a bit beyond my expertise, but I trust fully the folks I was talking to. They are as excited as I am about this cup for more clinical reasons. I truly thank the folks who came up with this cup. I am such a convert I tell every parent and shop I go into about it. They are a little spending at $10, but if everyone starts using them the price will come down…so go get one. J

I promise I have not been paid for this post. I just believe that strongly in recognizing a cool thing when I see it. Happy sipping!

Demo -  http://www.youtube.com/watch?v=3Iqc4iL0O84

WOW Cup Website - http://www.wowcup.com/

‘Buddy’ had a seizure last Friday. It wasn’t his worst, and it was his first in a long time. I know that. I am thankful for that. I also know there are many kiddos who have bigger struggles. I feel for them, and I greatly appreciate every gain ‘Buddy’ makes. But after 2 years it was a harsh reminder. I try hard not to think too much about the future. But the future is part of hope and hope is needed to survive, so it is a delicate balance. Friday we were once again reminded that there are no promises. So we live in the moment and do the best we can to find all the joy we can while working our @sses off to try to shore up the hope we were not promised.

The seizure was 10 min long. It stopped 6 min after being given Diastat. His diaphragm also seized so he was not breathing. He turned quite blue. I was home alone. I did all the right stuff, but was not as efficient as I used to be when this happened 2-3 times a day most days. Thank God it has not been 2-3 times a day…but you see, that is my fear. Everyone says one seizure in 2 years is pretty good. Focus on all he is doing, all he can do. I am, but it is hard work, because the other side of that is “Do you remember his history? Do you remember how quickly he can tank? Do you remember when he was so tired from seizing that he could not hold his head in order to keep his airway open?...We do. And if that happens again…think of all he could lose.” That is what brings me to tears, that and the not knowing why it happened.

We have had a hard month. Nutrica, the company that makes his formula, changed their recipe. We were days away from starting to wean ‘Buddy’ from the diet when we had to switch to the new formula. It was three days after Christmas, and the new formula had a completely different flavor profile. ‘Buddy’ would have none of it. (I will go into all this deeper on another post.) So we have been struggling to get him eating solid foods, homemade Keto Egg Nog, anything. I have been running around town trading new Ketocal, for old with parents whose keto-kids have feeding tubes. With all that craziness, his Keto Levels were still normal. Even though we started reducing a month ago, his levels were still normal. I almost wish they weren’t. If they were off because I made a mistake, there would be something I could fix. But there isn’t.

One of the incredibly hard things about having a medically complicated child is the powerlessness. What do you do when even the doctors say “I don’t know. Let’s hope it doesn’t happen again, but let us know if it does.” I have had to wrestle with my son’s mortality before. I am very clear that his time is out of my control. I can live with that because I know I have done everything in my power to make his time here, fun, full of love and the best it could possibly be, but I have to feel like I am doing Something, or I start to lose my mind. So I create plan Bs.

My plan B this time is CBD, medical marijuana. I am finding out everything I can about how it works, how we get it, where and what kind to get, because if our house of cards starts to fall I want a stronger glue to put it back together. And our house could fall. We have 6-9 months of formula available. I am trying to find more. During the seizure ‘Buddy’ bit his tongue and does not want to eat. We have to start over again trying solid foods. This will take more formula. The doctors want to slow his wean to 12 months instead of 9. This will take more formula. So even if there are no more seizures we Have to get ‘Buddy’ eating solid foods or he will run out of food and possible need a Gtube. If he has more seizures, we will definitely run out of formula and probably need a Gtube.

I am often told to think positively, not to dwell on the negative, but I have to run through these scenarios so that I am ready for them. I run the best case. I run the worst case. Then I create contingency plans. Only then can I breathe. For me to find hope, I need a plan. It is a delicate balance. There are no promises. So we live in the moment and do the best we can to find all the joy we can while working our @sses off to try to shore up the hope we were not promised.

(Thankfully, he is a very strong boy and is recovering well from this seizure.)

Verklempt. It is such a good word. It means: overwhelmed, flustered, nervous; excited, overjoyed, happy. It is that full feeling in your chest that is so expansive it presses on your tear ducts and catches in your throat so that you have to breathe deep and sigh. Verklempt is full on Joy, to the point of release.

I have been feeling this feeling a lot lately. I am so overwhelmed by the progress that ‘Buddy’ is making. I am so overwhelmed by the experiences I never thought I would get to share with him, that we are now sharing. We are going to walk to the local tree lot and get a Christmas tree tonight. Just thinking about it gets me teary, the smell of the pine, the cool crisp night, the reindeer in the corral that he will actually see!  Holding my husband’s hand and walking through the cold night to pick out just the right tree, ‘Buddy’ sitting forward in his stroller reaching out to touch and probably taste the trees. A year ago, he was unable to sit forward in his stroller. I just think about snow and I get short of breath thinking about the look on his face when he sees it, and ‘gets it’ for the first time.

It is a feeling all parents get, the wonder of seeing the world through a child’s eyes. It is beautiful, magical and life affirming…and we haven’t gotten it for three and a half years, well not much. So to get it not just in normal doses, but accelerated doses after that kind of wait, well, it is overwhelming, and it leaves me…verklempt.

It is a good feeling.