J-Bear and Me

learning to navigate the world, j-bear style

Author: Nicole (page 3 of 26)

This and That

Lots of odds and ends on my mind, lately.

I keep thinking “nope, I can’t write about Brooklyn”. That’s more painful to put into practice than I believed. I lied to myself in thinking I could do it and I genuinely feel I was unfair. Her paw prints are on all our hearts. It is a mark that will never be erased. There is nothing anyone can say or do to change that and to not mourn the hole left in our lives is just plain impossible. Everyone mourns differently. I write. I work through things slowly, piece by piece, because it takes me a very long time to look at each part and work my way into managing it.

The nose prints are still on the rear driver’s side window of the car. There are still a couple of dog toys bumbling about the living room. There still is a big container of dog food that she will never eat sitting in our kitchen. Her multivitamins and cranberry supplements sit sealed waiting for a girl who is not coming home. I can’t touch them just yet.

Her bed is put away. Many of her toys are set aside, awaiting J’s future partner. Her insurance is cancelled, a lot of the canned food was given away to a local shelter in need. Her collar and tags are tucked in my Nana’s hope chest with all my other most precious mementos. It’s all I can do.

We miss her.

————————

J’s anxiety is on a level I have not seen it. We cannot exit the house without coaxing.

“Loud truck,” he repeats, looking up and down the street fearfully.

“No J, no loud truck. It’s okay. It’s safe,” I coax while he hems and haws.

Several times this will go back and forth until he finally comes out. He then glues himself to my side, one ear pressed against my hip and my hand-held over the other ear so we look like we are doing some kind of broken 3-legged-man race. He will not walk to the car unless I do this.

I cannot leave a room in our rather cozy apartment without him being anxious to follow. We cannot be in separate rooms. He cannot be alone in a room, at all, unless deeply asleep.

This is not my son. This is above and beyond all I have ever seen of him. We are awaiting contact from a new doctor’s office to get in to talk about all of this and his autism specific care going forward. I imagine I would be so anxious too if the carpet had been ripped out from under me but we need help to get a handle on this and soon. No one should live this scared.

It’s strange to frame him responding to my praise at reaching the car one morning with “I always brave”… but I will never leave his efforts unrecognized. He is the bravest boy he can manage.

—————

There are new pictures of J coming, both from our friend Laura at Family Tree Photography and from his school. The moment I have them I will happily share them all. I know he is a photogenic little mite, he just rarely wants to stand still long enough to let himself be well captured. Thankfully Laura is the J-Bear whisperer (and baby whisperer, and just plain kid whisperer) and always manages to create something tremendous with her subjects. I look forward to sharing them when they come in.

That’s honestly all the news that is fit to print right now, so they say. I want to write more and yet, I struggle for what to write. I have a couple of items to review upcoming.  Exciting, right? As always I am open to requests or ideas. Just leave them here or on Facebook. Thank you all for reading and being here.

A Love Letter

I sound like a broken record and for that, I am sorry. This is grief and I have no sense of closure for this, not for myself and especially not for my son. My words and writing are all I have, so I hope you will bear with me. I hope this will be the last post like this for a while. – N

I wrote a post the day we met Brooklyn. You can read it here. I wrote about her overwhelmingly sweet, loving nature. I did not write more than that really because pictures taken by a dear friend told the story far better than my meager words could have hoped to.

My dear Brookie Cookie,

I cannot believe you are never coming home. I cannot believe that I will never see your face again, hear your tail thump against the floor, feel your cold nose nuzzling me awake. There will be no more morning, afternoon and evening walks. There will be no long chats as we did this or that.

Worse, there will be no sight of the beautiful language you spoke with your boy. People fret when they get a service dog for their child, especially a child like J. They worry that a bond will never occur. You eliminated that worry before we even came home. Your boy showed you that which was most precious to him and you learned, fast, to respect that. You learned that his touches on your tail, nose and ears all meant something. What? I have no idea, but you knew. He knew. You read him even better than me, his own mother, could. You could tell when to give him space or when to push up in his face and make him pay you mind rather than pay mind to that which troubled him. You overcame your lack of desire to give kisses to taste whatever crumbs graced his fingers or his cheeks. You laid close by him when he was shut down and waited until he was ready to engage again, leaving a paw within reach just in case he needed it. You played ball, gifted high-fives and loved him without question or qualification.

Until you, he could not walk through a store. You made it possible.

Until you, a baseball game was out of the question. You made it possible.

Until you, going to school was a battle. You made it possible.

Until you, his vision was unclear and unable to be diagnosed because the exam terrified him. You made it possible.

Until you, we had no peace and only a glimmer of hope. You turned our lives around.

There is no way in this world I could not love you as much as I love my sweet boy. You are a part of his heart and therefore, a part of my own. I would spend all those hours cooking you special meals and hand mixing your food and specially cleaning up after you all over again without question because it is for you and for him. I would walk on fire for you, Brookie. I hope you never, ever forget a home that loved you so deeply as ours. I hope you carry your purple teddy with you wherever you go and no one EVER takes that away from you. That was chosen special for you by a little boy who will never forget you, ever. You will be in the face of every golden he ever meets from now on and that teddy was his way of sharing with you his love of having a special cuddly toy without you getting into trouble.

You will always be in our hearts and we will always be here for you. I can’t accept that this is goodbye. I have to think that some day we will all see you again, even if we have to wait until heaven to do so.

With all my heart,

mama

 

I didn’t know how to tell him.

How do you tell a child something so abstract, especially when said child works solely in concrete terms. If he cannot see it, feel it, smell it, taste it, chase it… If he cannot physically experience what you are discussing the subject can be very hard for him. He experiences the world with his whole body and yet, here I was having to explain something that would touch only his heart.

a stuffed golden retriever wearing a crocheted red service vest

little missie b

After she left, J and I went to Build-a-Bear Workshop. He chose a golden retriever to stuff and she came in a cardboard dog house. She has her own food bowl, her own leash, so it was like caring for his girl while his girl was gone. A young lady knit pretend SD vests for stuffed animals and we bought one from her fundraiser. It fit this stuffed animal well. He was excited that his little version had a “jama”, short for “pajama”, which is what he called her working vest. Now she really was a little version of his best friend.

Last night, as J and I were sitting in the bed, I tried to gently talk to him about this big change. This sad news. My words were heard, that I know, but it will take time for him to process. We pet his stuffed golden, who proudly still wore her “jama”, and I carefully took the “jama” off. I told him she never has to work anymore, she can just play now. He hugged her tight and though he watched me put the play vest away, he let me do so.

He knows. The crack in my heart will never be right, seeing that.

Miss Kitty has been working overtime this summer. His beloved black and white stuffed cat along with a few other choice stuffed animals and the little stuffed golden are hollow substitutes for a best friend but he is trying. Every day, he is battling. It is gut wrenching to watch a child fight to feel safe, comfortable, relaxed and at peace. I need to chase his peace with all I have within me. If his mother cannot find him hope and calm, who can?

I am not sure how else to start or say this.

Brooklyn is no longer a member of our family. She will not be returning to us.

J is slated to meet a new dog in July 2016.

The depths of emotions surrounding this are hard to describe. I beg of you all to exercise restraint in any comments you might make on this subject. It is hard for me to avoid feeling like I have let not just my poor son down but you all as well. So many of you supported not just him meeting her, but getting us from Boston to Ohio. I am so, so sorry it has come to this. I’ll write more when I can.

Candle in a Hurricane

It has been a long, hard summer.

The problems started in the spring. Brooklyn got so sick, then on June 14th she returned to 4 Paws for Ability. She is still there today. The turmoil that caused for J is powerful. He has been extremely aware of where I am and what I am doing since then, allowing no other to put him to bed unless I am physically not there… and even then, it is only when he is at his grandparents that it is allowed. He is stressed about routine changes and about things he trusts to be there just not being there. There are not words said to express this, it manifests in near all he does.

Now, the start of kindergarten presents more changes and challenges. This, the uncertainty about what will happen with Brooklyn, the fact he is getting his 6 year molars early and all that fun stuff has combined into a perfect storm. I am fighting to not just keep my own candle lit in a hurricane but to also keep his from burning all around him. His pain turns into meltdowns. His fear turns into meltdowns. His heartache is loud, gut wrenching and soul ripping to witness.

The whole time it takes all that I have within me to just tell him I am here, that I love him, that I will always be there for him and that we will be okay somehow. This is not the person he is. This is not the charming, adventurous, sweet, compassionate, gentle and caring little boy talking. This is anguish talking; fear and anger and sorrow and confusion all meshed together into this horrible wretched beast that plagues him without relief. His world as he knew it was upended, and it continues changing, and the work we do to warn and prepare him only goes so far when one has a taste of loss in their mouth.

I try not to talk about meltdowns a lot because how fair is that of me to do so? I do not photograph them. I do not video them*. I do not record them because “that’s real”. Those are his lowest points… I would never want someone transcribing every detail of my worst moments, I can’t do that to him. Yet, here I am, acknowledging they do happen and that we are struggling and struggling hard right now. It does not help that he caught a back to school bug either, but that’s honestly the least of his worries.

Every morning though I wake up to him being eager to hug and letting me know that my little boy is right there, ready to try again with the new day before him. He tries, so I try too. There may be more upsets to his apple cart in the near future but, all things willing, we will finally get him to a calmer, more comfortable place very very very soon. I apologize for being vague, the moment I have concrete facts I’ll happily share them as I always do.

5 Years of Learning

Before I get into this post just a reminder that we are trying to help Madison at Madison’s Adventures finish her fundraising to meet her own Brooklyn! You can read her story and donate here: https://www.razoo.com/story/4-Paws-For-Madison

babywithpuppy_markedFive years ago a little boy stormed into my life and changed everything. He wasn’t even born yet and he was writing his own agenda; charting his own course. There’s a due date? That doesn’t work for me, I’ll arrive when I’m ready… or when you evict me because I fell asleep and forgot to leave. I’m supposed to grow how fast and on what curve? Throw that out the window! Oh, you think you have when I’ll walk and talk scheduled? Well I’ll tell you what I think of that… When I dang well feel like it!

And that’s been how J-Bear does J-Bear his entire life so far.

dynamicduo_markedHe has worked so hard in the past year. He met his best friend Brooklyn last October and formed a unique and immediate bond with her. Brooklyn had an atypical 4 Paws story. She never had a traditional foster, only prison. She was considered feisty and stubborn. She is 70lbs of sass, silly and most of all love. She could not have been better matched to her boy and we miss her incredibly while she’s back at 4 Paws training.

The day Brooklyn came home, life changed. The entire world we knew shifted and it shifted for the better. J has grown such confidence in himself. He initiates conversations with new children and occasionally adults. He says “hi!” and even looks after people who seem to need help, displaying an intense and deep sense of empathy for those around him. He helps those smaller than him, studies those bigger than him and accepts each person exactly as they are. It is an unfettered, joyful and amazing way of looking at the world, one I hope lasts for a very long time.

selfie_markedHe has braved doctor visits, receiving glasses and even getting x-rays. He has talked on the phone, learned to work a computer at school and made true friends. There is no one apart from the station itself that knows Nick Jr’s lineup better than J, nor does another soul likely know the name of all the characters as well as him. It’s kind of scary the knowledge he retains… Scary and impressive.

This little boy who started out as a sweet, snuggly, smiling baby has grown into a rambunctious, loving and caring boy. Today, he chose a special new stuffie for himself that looks just like his beloved Brooklyn. He picked out a bed, a leash, a collar and a bowl for her too. The moment we were in the car, he was cuddling her and said “Brookie sick”. I asked what was wrong. He answered “Brookie belly”….

firsthaircut_markedNothing is missed. Nothing is overlooked by him. He listens and understands everything around him, filing it away for when the knowledge may be useful. He understands Brooklyn’s being away better than others may expect. He even surprised me with his depth of understanding as until today, he’s not said anything directly about it outside asking for her. It reinforces that I will never stop explaining things to him with care and reason, never dumbing things down or withholding his chance to take in the knowledge.

He knows. He’s so smart, so sweet, so amazing. I cannot believe this is my little boy and I’ll thank God every day for the gift of having such a blessing in my life.

Here’s to the first five years. Let’s see what the future holds from here.

Orange is the new Brooklyn

a prison ID with the image of a golden retriever looking alertly at the camera and her name BROOKLYN noted as the inmate in question

Prisoner 62210.5

Yesterday the prison programming helping 4 Paws for Ability welcomed back returning inmate Brooklyn. Now dubbed “Crooklyn”, she has been sentenced to 2-4 weeks to help rehab her for life on the outside. This is not what we planned nor is it what was expected. I’ll be honest, I was fighting mad at the idea that things were not going to go as I had been told they would.

Brooklyn is separated from her boy not so we can enjoy a leisure vacation of some nature prettybor because we, her people and her family, don’t want to deal with what she is struggling with. The reasoning is far from that. The dedication we have to Brooklyn is on level with the dedication we have to her boy. Her health, her welfare… All of her best interests are what drive the choices made for her. The idea of returning her to prison was painful. The moment Jeremy told me that was the plan, something inside me cracked harshly. I was abandoning my girl to another stint of being shuffled from person to person like she was unworthy or undeserving of consistency, love and stability. This is what my mind said.

This is not, I pray, the reality of things.

She will be with a prisoner who can give her something neither I nor a trainer or foster family can right now and that is focused, constant observation and care. Prison is a controlled environment for many reasons. This is to Brooklyn’s advantage. If something behavioral happens to trigger her issues, it’s going to be far easier to pinpoint. If it is something physical that is failing, it’s going to be easier to notice. My dedication to her may be strong but my eyes and attention are not laser focused on her 24/7. I have J and just life in general to cope with. The prisoner caring for her will be all about her for their time together. They will be a long-term member of the 4 Paws program experienced with the wide variety of dogs that come through it.

This stranger will help us make her whole. This stranger has an integral part in her future now. It is hoped that this is one of the prisoners who had her in their care before, as they already are a part of her, but I will likely never know if that was the case. The prison program gave her love she could not find elsewhere before and I am praying and trusting that this is exactly what will happen now. I’ve never wanted to hug someone in jail so much before but whoever these people are, they truly have my undying gratitude.

smilesThe sentence Brooklyn will service is 2-4 weeks. Two weeks from now we should get an update about how she’s doing. The hardest part? Prisoners can’t send photos. They can’t let J FaceTime with her or anything, for obvious reasons. It’s not their fault, but it is very hard on a little boy with autism and we’re going to have to figure out how to make do. Thankfully he has many stuffed dogs who are working hard to fill the too large empty space in our home and lives right now. The hope is that she will be home in time to start kindergarten with J in September but only time and patience will tell.

Thank you everyone who has been following our story for your support and love. This is very, very hard to go through but it helps knowing there are so many people out there who care and who want to see this team reunited and stronger than ever. A special thanks to the 4 Paws for Ability training staff (especially head trainer Jeremy, senior trainer Jennifer and Brooklyn’s trainer Shelby as well as Yrisma for their special assistance of Brooklyn through this) as well as the amazing little group of 4 Paws foster parents who have stepped up to be Brooklyn’s surrogate foster parents in the stead of prisoners who cannot offer extended support. Without your support, this would all be nearly too much to bear. Thank you.

to be reunited soon

to be reunited soon

 

Forward and Back

The past two months or so have been chaotic, to say the least.

First, Brooklyn came down with a bad bladder infection in April. We got her in to see her vet and all was well, so we thought.

Mid-May, she got nasty sick one morning. Just boom, all over the floor. Several times in a row. It’s my nature to think the worst and vomiting or diarrhea in dogs can go from zero to emergency fast, so we went to see her vet. Her vet is amazing. He is a friendly South African gentleman with a warm demeanor and genuine love of his job. He has never made me feel crazy for my worrying, that’s for sure, and took our girl’s care quite seriously. She had a low fever and some other symptoms, so he did blood work and got her started on some meds to soothe her belly. The blood work showed mild elevations on her liver function tests plus slightly low platelet count. She wasn’t bouncing back as she should have.

Off to the veterinary emergency hospital we went!

The care we found there was as warm and loving for her as at her regular vet, so we are blessed. They thought they noted something odd in her belly the first visit we were there but it turned out to have just been food, thank God. She still wasn’t herself, even after her repeat blood work came back relatively normal*. They believed she had leptospirosis. This is an infection that is generally vaccinated against but some strains are not covered. This potential diagnosis terrified me. Lepto had almost killed a 4 Paws dog just last year. Whatever it was that brought us in to the vet so early is our biggest blessing right now. They began treating Brookie as though she were positive for the illness that day so that she and her boy would be safe. They also discovered her bladder infection had either recurred or not gone away, so she was treated for that as well.

We are getting her back to perfect health a little more every day. Her diet is currently a challenge due to the strong antibiotics, but that strain shall lessen in a couple of days when she is finished one of the two she is on. The one thing that none of this health scare has managed to either find the cause of or remedy entirely are her accidents. These accidents have occurred since we arrived home. We cannot fully find a rhyme or reason to them. The moment we think we have a functioning theory and a probable solution, one happens outside the bounds of what we’d theorized and we’re back to square one.

So now, we face our girl returning to Ohio for evaluation by her trainers. It is hoped that the remedy is a quick, simple and easy one. It all depends on whether or not the behavior is replicated while she is there. This is like J-Bear and the neurological symptoms he’s had over the years, though. We can describe everything surrounding when they happen but we certainly cannot trigger them to happen ourselves. I am scared of what the future holds if they cannot see what we’re experiencing or worse, there is no quick fix. Brooklyn is as one of us now as J. She is a very important part of our lives. She will not be left behind, no matter what. I promised her that the first day she came back to the hotel with us, and I feel I am letting her down taking her back. My only comfort is that it will be temporary, no matter how things shake out. We are her family. 

—————————

J, through all of this, has tried to be a very grown up boy all things considered. He shows deep concern for Brooklyn and like we always know, he’s always watching and listening. He knows she takes medicine. “Brooklyn medicine, not Jacob!” he emphatically reminds me. He knows she doesn’t feel good sometimes and he offers to kiss her boo-boos, even though he can’t quite tell what they might be. It is very tender and very sweet. She checks on him regularly and in return, he does the same.

The loss of his biggest support has been expectedly hard. Changes like this show their repercussions slowly with him. He builds up pressure inside until one day, or across several days, it all explodes in an ugly mess. His vocabulary is growing but it has not yet grown to include an easy array of words with which to express how he feels, so we struggle. He tries, though. He tries to describe everything he possibly can now.

It is a stark, remarkable change from where we were just two years ago as he entered preschool.

Now we wait and face the challenge of a summer without his Brooklyn. It will be hard and painful, going through his birthday, through doctor appointments, through activities and school without her. It will feel like a limb is missing in a lot of ways. Let’s hope we can return her to her place by his side very, very soon.

——————-

*= I say “relatively” because some of the counts were just on the cusp of unusual but not truly anything remarkable. 

I Didn’t Choose Her

I didn’t choose her.

It’s true, we chose to have a dog. A service dog. I read about various benefits and various agencies. I learned what these dogs could do and what they could provide that we, the adults in his world, could not. I chose to apply and to fundraise and to rally to J’s cause.

But I did not choose her.

service dog on leashThe process is long. When you engage 4 Paws for Ability and have finished your fundraising, you begin the match process. This involves videos of your life and your child alongside intensive questions so that the trainers can get the most complete view of what your family needs in a dog. It will help them understand the dog’s tasks, if the child will be able to command the dog at all, if the household is a busy and chaotic one or a more low-key one… Everything that might make a perfect fit. It feels like a dating profile. You’re putting yourself out there laid bare – yourself and your family of course – and you’re hoping that these trusted at that point strangers can sift through it and add the piece you’re missing.

They can, and they do.

Brooklyn was sassy from the start. She was a confident, silly puppy from what I am told. She has known herself better than I know my human self, to the point where she may have seemed overconfident. She had her early struggles. Whoever her prisoners were, God bless them deeply. They took her in hand and gave her the tools to be great. They had a rough stone and set to creating something shining and unique from it. When it was ready for finishing, they handed it to the loving hands of the 4 Paws training staff.

They shined her up into a diamond.

golden retriever

thanks to Stephen Herron for this beautiful photo

We did not choose Brooklyn. She was chosen for us, by the trainers and by fate. Her body could have been any shape, size or color but her heart; her spirit are exactly what we needed. She compliments J in ways we could not have anticipated until we met her. She slotted into our lives like she had never not been there. She minds all of us along with everyone she comes to know. We are her people, and she loves us openly and completely. There is never a waver or falter, only forgiveness and love.

It’s amazing. She is amazing.

Right now, Brooklyn is sick. We aren’t sure what besides these awful recurrent bladder infections. We’re hoping it turns out to be just those, because then we can move forward and get her healed. Whatever it is, whatever it turns out to be, we will carry her through. I did not choose her, we were blessed by having her chosen for us and we will not let her down or let her suffer. She has only been with us 6 months. It is our job as her caretakers and family to make sure she has so, so, so many more months and years of good life left with us all, no matter what it takes.

A Little (In)Sight

I cannot remember the first time I noticed it with exact dates or times. I only remember that he was very, very small. Newborns do not focus their eyes well, but babies start to. Toddlers assuredly do so even better, yet somehow, J’s right eye was always seeming to turn inwards. It was typical of me though to constantly question myself. Was that really happening? Was it something to be concerned about? Growing up with a lazy eye myself was on my mind, so I kept watch on it.

Last year, it grew more obvious. He was definitely dealing with something in terms of his vision. The strangest part was this child has never missed a beat in terms of picking up on visual stimuli in his environment. An issue that truly affected his sight to any measurable level was not the first thing that came to mind, strangely enough. He was and is a very visually stimulated child. The journey began to figure out why this one eye decides to do its own thing.

Our first visit to an ophthalmologist was horrifyingly bad.  The woman advertised herself as working with young children and people with disabilities. She claimed to be a developmental ophthalmologist too. This should have uniquely qualified her as someone able to work with a kid like J.

Nope. Nope. Nope. Nope.

She was a nightmare. She was impatient with him, he could not settle in her office and I spent the entire appointment chasing him around to try to settle him while she complained about his lack of cooperation. I’m sorry, but when you’re about as personable as a cactus you’re going to get what you give. She charged us a stupid amount of money for the privilege of learning nothing we needed to know. I was angry and discouraged.

Then we went to the pediatric ophthalmology department at Floating Hospital. This was a whole new world! The techs that work there have a truly golden touch. Our first visit was not perfect but it was good enough that the doctor could see that there was something there, something to be kept watch over and something to try for better assessment of in the future. She did not dismiss us nor did she push J so hard he was in hysterics by the time we left. She worked with him, not against him, his best interest firmly at heart.

That first visit was in December. We were newly home with Brooklyn so her place by his side was not as solidified. She was there for him at the appointment but it wasn’t what it could be. Flash forward to late April…

Perfection. Absolute perfection.

J walked into the office without a fuss. He attended to what the doctor asked him to do, no coaxing from me. I assisted with directing him to reading the board across the room but little more than that. She got an excellent read on what exactly he could and could not see, plus what his vision needed. This visit the crossing of his eyes was very, very clear to her as well. Brooklyn stayed nearby and kept a watchful eye over her most calm of boys. He struggled having his eyes dilated but that was expected. Once the drops were in, his good humor returned and he did just such an impressive job with the rest of the visit.

two pictures together

I cannot even get over the cute here folks.

Trying on glasses was a hardship but he did it. He now sports some dark blue Miraflex glasses that can withstand his level of activity and just general J being J. He has taken to wearing them much, much better than we all expected too. The entire team (doctor, therapists, family) had a plan in place with a back up plan for that plan if he rejected the glasses. They have not been needed yet. He has truly, truly impressed all of us.

The amazing thing is hearing him speak even more about what he sees. Let me tell you, he sees everything and is fascinated by it. Most parents enjoy their children detailing the world as they see it at a younger age… I am so excited to be hearing it now. Car! Truck! Bird! Helicopter! Clouds! … His observations are quick and cheerful. He loves the world around him, so very much.

And every dog is Brookie.

It’s another new little chapter in our great adventure of life adding glasses to his world. He is adapting, he is growing and he is continuing on his own amazing course. It is not always easy but it is the successes that come, like this one, that make any pitfalls seem so very small.

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