Legalize It

In case you haven’t heard — there’s an election next week. There are very clear choices on one side of NJ’s ballot, but I want to remind Jersey voters not to forget to turn over your ballot.

Question 1 would add an amendment to the state constitution that legalizes the recreational use of marijuana, for persons age 21 and older, and legalizes the cultivation, processing, and sale of retail marijuana.

In a time when our state is in need of help, the tax benefits alone would drive me to support this amendment, but selfishly the legalization of recreational marijuana would make my life, Jack’s life, and the life of many, so much easier.

I’m a pot mama.

Of corse I’ve never used pot myself (it’s illegal 😏), but Jack has had a NJ medical marijuana card since 2016. We needed to fight the state, but were able to qualify because Jack was suffering from debilitating spasms that were effecting his ability to walk. Marijuana not only helped with the spasms, but has improved his overall quality of life. He eats better, sleeps better and although his mood has never been a problem, he’s even more JackO.

We have friends and family who credit marijuana with helping with nausea caused by cancer treatments, appetite, anxiety, sleep, depression and a host of other ailments. All without any complaints of bad side-effects other than it can be a pain to purchase and there’s still a lingering stigma attached to marijuana.

I don’t worry too much about people judging us for giving our son marijuana. There have been too many improvements in Jack’s life thanks to our adding marijuana to his list of medications, that we feel completely justified in our decision. What I do complain about is that medical marijuana in NJ is a labor of love — labor being the first word.

Every few weeks I contact Jack’s doctor to make sure our file is up to date, make an appointment and head out to one of the 3 dispensaries in our area (none is our community). I purchase an ounce of marijuana and then go home and start baking. It takes hours. I decarbonate the flower, clarify the butter, use a fancy machine to infuse the butter with marijuana and then bake cookies. I try to make each cookie with approximately 7 milligrams of THC – that seems to be the dose that helps Jack the best. Some caregivers would be forced to sample the cookies to gage the strength (of corse I won’t do that — it’s illegal😏). Jack has a cookie two or three times a day until we run out and then I make another run to the dispensary and spend another day baking.

Legalizing recreational marijuana would make access to marijuana easier and limit the need for Jack’s doctors to be involved. No more cards and physician’s certificates. It also means we could purchase eatables with a specific strength so that this mom doesn’t need to sample cookies to gage strength (NOT that I would do that — it’s illegal😏). And, legalizing marijuana would help limit the negative stigma attached to a medication that has improved Jack’s life exponentially.

So, if you live in NJ and haven’t voted yet, please make sure you turn over your ballot, think about Jack and his sweet smile, and do the right thing. Then turn your ballot over again and make sure you voted for Biden/Harris!!!

Love, Jess

other mothers, a taxi driver, and a plan

I’ve spoken about Jack’s “other mothers” in the past. A small group of women who Jack adores and who we trust with our most prized and fragile gift — JackO. Each of these women have become family and each has helped me every bit as much as they’ve helped Jack.

Last weekend when Monica arrived to hang with Jack for a few hours, she noticed right away that I was not myself. I shared that I was feeling a little off and she pondered if there was something in the air lately. She too had been feeling a little blue and told me that she’d been spending time listening to wellness speakers and reading inspirational books. 

She shared something she’d heard and found motivating.

When you get in a taxi, you need to tell the driver where you’re going. If you don’t, they might be willing to drive you around, but it’s unlikely to get you to where you want to go. Even if it does eventually get you there, it’s not a direct route and can be expensive. “Words are powerful, Jess. Find the words for where you want to go.”

Wow!

As soon as she shared that story, Monica started putting on Jack’s shoes and left me there thinking as she took Jack to Wendy’s to pick up some bacon-double-cheeseburgers. She had no idea that she had given me the last kick I needed to make a big change.

I sat down on the living-room couch and asked myself to figure out the words for where I wanted to be in five years. The words were right in front of me. I then called my mother and told her what I was thinking — I told her my words (I know I’m 50, but she will always be my goto person when I’m struggling). She said, “I think that it’s a dandy idea. Move forward Tates. Don’t let anything stand in your way.”  I spoke to Dan who told me he was proud of me and supported me 100%. By the time Monica and Jack returned to the house with their greasy fingers and full bellies, I was on the computer researching master’s programs. By next week, my applications to get a MA in Counseling will be complete and I’m hoping to start in January.

Truthfully, I’m not usually a person who believes in everything happening for a reason and that the world makes much sense. I’m more practical and believe that life is usually a mess and it’s our responsibility to make the most of it. Either way, Monica’s words hit me in an unexpected way and I am grateful. I’m ready for my next chapter now and I am relieved to finally have a plan. I’m aware that I haven’t actually been excepted into any program, but my words are out there so what could go wrong?😏

I’m fifty. I’m a wife and a mother and a friend. I’m a writer and a photographer and teacher. I’m also a special needs mother who’s passionate about working with other parents who are struggling to find their way. And, here’s what I’ve discovered folks — I’m also a taxi driver. Thank you Monica!!!!!

Love, Jess

I searched the internet trying to find the source of the taxi story. I couldn’t, but I did find this one.

“Life is like a taxi. The meter just keeps a-ticking whether you are getting somewhere or just standing still. — ” Lou Erickso

And of corse, I’ve always loved this one.

“I may be going to hell in a bucket, babe. But at least I’m enjoying the ride, at least I’ll enjoy the ride.” — The Grateful Dead

One more thing — Peter is included as one of Jack’s other mothers.

time to refocus (on what? not sure – give me time)

I know I’ve been a little unhinged lately. I know it when my friends start reaching out, “just checking in” and when people start asking if I’ve thought about getting a job or going back to school. I know it when at the end of the day, I still have my pajamas on and my iPhone tells me that I’ve spent HOURS on social media. I’m fighting with strangers and obsessively watching the news and finding myself checking my Twitter feed while sitting on the toilet. I don’t want to miss anything — as if my not being there is somehow going to lead to worse news.

Last night I had a ALD Connect Community Call on my calendar and logged on begrudgingly because I was going to miss time in front of the evening news. As the facilitator of these calls, I’m responsible for reminding callers that we are not to discuss the specifics of the phone calls. I won’t share details, but I will tell you that I got off the call in exhausted/relieved/happy tears. And, with a renewed sense of purpose. An hour and a half with members of the ALD community is what I needed to remind me of what’s really important.

My frustration with our current political situation/pandemic nightmare is that I’ve felt like I have no control. It’s coming close to how I used to feel about ALD. For years I would look at my son and his challenges and wonder why this had happened and why we couldn’t fix it. I struggled with making sense of all the WHYS.

Then I wrote Smiles and Duct Tape and Jack’s story started getting out to the ALD world. In sharing our messy journey, I realized that I wasn’t just telling our story, I was connecting to the community who understood our disease. People who knew what a Loes score was and what GVHD stands for. People who knew that we were unlucky not to have had an early diagnosis, but lucky that Jack never lost his vision and hearing.

It was something that I didn’t know I had longed for for years — connection. Being with our community helped me process what we were experiencing, learn practical things that have helped us and allowed me to help others Giving back —- helping others — is powerful. It got me from a place of feeling sorry for our family to feeling proud of our family and it’s strength.

Talking last night with several other ALD families, I realized for the first time in a while I was thinking about something other than when we could leave the house without worry or what will happen on November 3rd. It reminded me that the world doesn’t always make sense and we need to focus on what we can control. As much has I have – on some level – enjoyed getting feisty with non-mask wearing/virus deniers on social media, I know that I’m not going to change anyone’s mind.* I need to get back to doing something positive, something helpful — connecting — to our ALD community, the special needs community, to our MAPSO community, to our family.

I’m still wondering if it’s time to consider getting a job or going back to school. Writing, coaching, counseling, who knows? But, today, before even checking the overnight news, I was on my computer looking up ideas. Not sure if I will dive in, but it sure was a nice distraction.

Thanks to my friends — new and old — who were on that call last night and helped me refocus my energy. It’s noon and I have clothes on, have run some errands and haven’t yet gotten into any debates on social media.

Love, Jess

* I will still block anyone who is spreading misinformation. And, I encourage everyone to VOTE. For Biden/Harris💙😷✌️

second wave

I used to love the fall. It’s crisp air and magical light always arrived to some relief after a busy, hot summer. The beginning of the school year always felt like a new beginning and our calendars were filled with annual events — harvest parties and parents’ weekends. And, the fall culminates with a wonderful holiday — my birthday.

This year is different. As the temperatures lower and the leaves begin turning, I’m starting to panic.

I’m worried that we’re approaching the second round of hunkering down as the fall has arrived and the COVID numbers have started ramping up again. This time we know what it looks like to quarantine and, in this case, knowledge is not power — it sucks.

When all this started in mid-March, we thought it would be a couple of weeks. Almost like an extended snow day. We filled our freezers with food and set up the puzzle table in the living-room. Having the four of us home was like an unexpected staycation. Am I the only one that thought it was kinda fun? For a couple of weeks . . .

Then the reality crept in. A few weeks of missed school turned into no prom or graduation for Jack. Anna’s spring semester ended at home and then Hopkins announced virtual learning for the fall. Dan’s office started talking about limited returns to in-person work, but not until 2021 and every single house project I had on my list got finished.

Just as we thought that we would go nuts (with just our tiny pod), the weather warmed and our backyard filled with other people and life was okay again. Different, but okay. We got into a rhythm. Dan realized that he could sneak in some hiking while on calls. We planned at least one dinner a week with friends or family. Anna headed back to study in Baltimore for a change of scenery (and people). Jack got to spend some time with old friends and enjoy long walks and hours in the pool. We even ventured to friend’s yards and restaurant dinners (in parking lots), and snuck in a couple visits to Block Island. Our family realized that we could manage our strange new life of masks and Purell as long as we could see some people. It wasn’t a normal summer, but it was lovely.

Now days are getting shorter and cooler, and except for a few fire-pit nights planned, I see a very empty calendar. It’s hard to make safe plans if we don’t have the ability to be outside.

I hear people saying that things can’t shut down again. The economy will be ruined and people will go insane. I agree, but I’m just not sure my family has a choice.

Jack’s immune system is pretty strong 13 years post-transplant and we are usually able to manage his Addison’s Disease and Epilepsy with medications. Jack might be able to get through COVID without too much harm. But he might not. My parents might do just fine. Or not. And what if I got sick? Not in-the-hospital sick, just really sick. Who would care for Jack? Where would I care for myself?

We’re a family who is erring on the side of caution and I’m worried that it means that we will soon be limited to our home and a tiny pod. I don’t WANT to do it again. I’m just guessing it’s going to happen. So for the next few weeks we’re planning to do as many outdoor activities with friends/family as possible. We are also going to load up on some extra food for our freezer and grab a little extra toilet paper.

I know we are not alone in worrying about friends and family who might be more vulnerable. What are you doing to protect them?

Love, Jess

safe(ish) choices

September is here and it’s been fascinating to see how everyone is getting back into the swing of school/fall — in-person small classes, home schooling, virtual learning, hybrids. Our family is still struggling to find our “back to school” routine. We have a messy, make-shift assortment of activities for JackO that we seem to be constantly changing (although he is happy and busy(ish)). Anna is back in Baltimore, taking classes from her apartment and has already been quarantined twice after being exposed to people who tested positive for COVID. Dan is continuing to work from our home office and seems to enjoy working unshowered in tee-shirts, but I do hear him throughout the day yelling at Fios. I win the award for the least productive family member. I do start each week with a master plan of writing and work-outs, but instead find myself doing everything but. At least my closets are clean.

These are crazy times and I keep reminding myself that things will get back to normal at some point. Maybe NORMAL isn’t the right word. 

Thirteen years in, and our family still refers to our lives as before and after ALD. Two years following Jack’s transplant, we still had a suitcase in the trunk of the car just in case we found ourselves in the hospital. And, when everyone was struggling to find masks in March, all we had to do was go into Jack’s closet where we had our leftover pile from post-transplant isolation days. Having gone through that time in our lives, scarred us and left us always feeling like a shoe could drop at any moment. I resented this unease for years, but I guess it prepared us for this latest sh^tshow (I tried to find another word, but noting really worked as well).

Having learned from our ALD experience, I would imagine the entire world will live for quite awhile referring to life as before and after COVID. I’m guessing that it will be years before a cough is just a cough and the pile of masks at our front door disappears or we allow the Purell in the car to dry up. I know someday we will go back to living again, but when?

Maybe instead of focusing on getting back to normal we should focus on creating a new way of living. I know for some of the country, masks have become a political statement, but here in our area masks are mainstream. It means that I now venture out into the community without too much fear. I do find I am constantly looking around for maskless faces and listening for coughs, but mostly I am just going about my business. Being out — even just to run errands — feels liberating after months of the only non-family member we would see was the UPS deliver person.

Part of our back-to-school/fall plans is seeing more people.

We are trying to have friends over at least once a week and even went out to dinner last weekend — outside. I’m taking walks with friends again and Jack has his “other mothers” and his favorite OT (we love you Mr. Galo) coming to the house again. We are even heading to visit friends and to see my in-laws for a few days this weekend. Not that any of these choices are perfectly safe, but everyone we are seeing has been hunkered down and except for a small crew of people, everyone wears masks when not outside/distanced. We feel there is minimal risk, but do appreciate that some of our choices aren’t perfectly safe. Still, we are willing to take the limited risk. Stretching our comfort level is important for us right now so that we stay sane. We were starting to go a little nuts and within a few weeks, the cold will blow in and entertaining will become harder. The flu season might also complicate re-opening in general and we don’t want to look back in November and wish we had seen more people while we could.

So that is where we are right now. Trying to get in the rhythm of the new season and control what we can. Wear masks when out, wash hands constantly and see people in a safe(ish) way.

It’s Thursday and I still haven’t done much working out, but at least I can say that I did spend an hour writing. Now I can go back to procrastinating my paperwork and organizing another closet. Maybe I’ll also reach out to some friends and see if we can make some dinner plans out on the patio next week.

I just hope that, before too long, we can worry less and hug more. Until then — Happy FALLLLLLL!

Fingers Crossed, 

Jess

New Tricks

I often chalk stuff up as a happy accident or a funny coincidence when Jack has a new trick. It’s not that I’m not proud of our boy or that I don’t pray with every ounce of my soul that he will make improvements and develop new skills. I’m just being careful. It’s my way of protecting myself from disappointment. For years, I would see small successes and think it was the beginning of a huge transformation. I was often left disappointed when a new trick vanished as quickly as it had arrived. So I’ve learned to focus on and celebrate what Jack is doing well and consistently.

Over the years there have been some things that have proved to be more than a trick. Jack relearned how to walk with purpose, eat solid food, hug. A few years ago, after being told repeatedly from the folks at his high school that Jack could read, I watched as Jack pointed correctly to a word on a sheet of paper. I paused and then pushed down the excitement, reminding myself that he had a one-in-four chance of choosing the right word — not crazy odds to have guessed the correct answer. Then he did something similar the next day. I tentatively held up word after word to test the skill. I was delighted — and shocked — to see that his teachers were right.

Lately we’ve witnessed another new skill that at first had us laughing.

Last week I got a flurry of text messages from friends asking me what was going on? “What are you saying?” “You okay?” “What’s THAT photo?”

When I scrolled through our correspondences, I saw odd comments and strange photos. I couldn’t figure out what was going on — had my phone been hacked? And, then I saw something that solved the mystery. A large nose.

It was Jack.

I went into the bathroom where Jack was sitting on the toilet with his iPad on his lap. Jack isn’t consistent with his toileting and we find that if we sit him for a bit every few hours we can often save a diaper (adult diapers are about $1/per — and we are cheap). We sit him with his iPad so that he can stay entertained AND stay seated (he has startled more than one guest over the years by walking out of the bathroom with his pants around his ankles).

After the random texts, I realized that Jack’s iPad is linked to my phone and that he was writing to people. How on earth? He must have just been lucky as he hit some buttons.

Then it happened again. And again. Apparently Jack likes texting and sharing photos of his nose and thighs (thank goodness it hasn’t been of anything else).

Then this morning I heard Anna’s voice coming from the bathroom. Having just delivered her to Baltimore, I wondered how it was possible until I walked into the bathroom to find Jack smiling at his sister’s face on FaceTime. Apparently he doesn’t just like to write notes.

So folks, I need to apologize in advance for any odd correspondence you might receive from me. It wasn’t a butt dial and I haven’t been day drinking. It’s just Jack saying hello.

AND, if you get any photos . . . I’m really, really, really sorry. PLEASE do not alert the authorities.

Love, Jess

ZOOM LIFE and “this is a REALLY happy mom” smile

I’m glad I waited before turning on our camera. I needed a few minutes to get my bearings. My priority was to keep Jack calm and happy. It was hard enough to hide my reaction from him —  I couldn’t risk anybody else witnessing any tears of awkward stares.

It’s one luxury of ZOOM LIFE — People don’t need to see you, until you’re ready.

Once I took a deep breath, I put on my best “this is a REALLY happy mom” smile and hit “start video”.

Last week Jack started logging onto some virtual activities with the adult program he will (some day) attend in person. The lovely staff sent us a list of options ranging from art classes to Zumba to music to virtual outings. We were excited to start participating and eager to have a bit of a schedule; especially with Anna heading to Baltimore before too long.

I knew that once we logged in we would “meet” many of Jack’s new peers, and we also knew his peers ages range from 21 — 70+ and that they all (like Jack) have rather complicated lives. 

Let’s go back 13 years to when we walked into The PG Chambers School for the first time. I managed to keep that “this is a REALLY happy mom” smile, but tears filled my eyes as I was introduced to Jack’s new peers. Our family hadn’t been part of the special needs world until Jack was eight-years-old and thrown in with no time to prepare. We hadn’t known many children with such complicated disabilities before the day we walked into the school. I know it sounds awful, but it made me sad and overwhelmed that Jack was suddenly part of this world.

The same thing happened when Jack started at Horizon High School (now Pillar High School).Teenagers with disabilities were not a population I knew and everything looked bigger and more complicated. My “this is a REALLY happy mom” smile needed to be firmly planted before I walked into the school that first day. Maybe two.

Of corse within weeks, first at The PG Chambers School and then at Horizon High School, the student’s disabilities faded and their personalities shone. Quickly, I found I no longer focused on the wheelchairs and tubes and braces. Instead, I would focus on the smiles and the wonderful energy that always filled the space.

I pride myself on being open-minded and non-judgmental. I don’t define people by their successes or their failures. I don’t judge people by their talents or their challenges. But, once in a while, I need to pause to let my emotions catch up to my brain.

Last week, as we logged on to the virtual program, I needed a second to look around at the boxes of new friends and take a deep breath, before hitting “start video”. Within a few minutes we were dancing Zumba as a family, but we weren’t dancing with our usual Torrey gusto. While ZOOM LIFE can make things a little easier, it is a bit harder to connect and feel part of something new when everyone is just a box on a screen.

If the staff at the program asked how they thought Jack and his family were adapting to their program, I’m guessing they would say that we are a lively family and seem happy. Our family IS both lively and happy, but we are human and sometimes it takes us a moment. Until then, we will dance until we can really boogie — I imagine that the staff will see the difference when it happens. AND, I am guessing it will happen soon.

I hope everyone is enjoying the tail-end of the summer and getting to do a little boogieing!!

Love, Jess

hApPy BiRtHdAy JaCkOOOO!

When I was 22, I had just moved to New York City and was working for an advertising agency. I had my last “first date” — with Dan at the Democratic National Convention (because he’s always been the coolest guy on the planet). I was busy contemplating whether I should continue working in advertising, return to being a photographer’s assistant or apply to graduate school. Nothing was set in stone, but I was happy and my adult life was underway. 

Today Jack turns 22. He’s living at home and working on getting through Season 4 of Jersey Shore. He has ongoing dates with Maria, Monica (his caregivers) and Anna. He’s not sure wether he’ll be going to an adult day program this year, doing virtual activities via zoom, or just hanging out for the next few months. It’s not the life I would have imagined my son would be living at this age, but he’s happy and his adult life is underway. 

While Dan and I are stressed about what’s next for our boy, Jack continues to enjoy every inch of his life. He’s not worried about when his adult program will open or running out of hand sanitizer. He’s not fighting with people on social media about wearing masks. He’s not wondering if our country is heading into a depression or if we will ever feel comfortable getting on a plane again.

Jack enjoys today and trusts that tomorrow will be even better. For a silent person, he’s my loudest teacher. 

Yesterday we lost power — as did many as Isaias managed to rip it’s way up the east coast. I spent most of last night worrying about whether our power would be restored quickly and if the generator we’d set up would somehow leak carbon monoxide into the house. I worried about if the branch that had taken down the power line had first hit our house and that there was a leak that we hadn’t yet seen. I worried about how I would be able to clear out the branches from the pool so that Jack could swim and what I was going to make for Jack’s birthday dinner. I got up this morning and looked at Jack’s sweet smile and decided that for Jack’s birthday I’m going to honor him by adopting his beautiful attitude — at least for a day;)

Today there will be no worries on Speir Drive — just gonna hang out and embrace the day. Oooooh, and swim in a pool full of branches and leaves and order some food for dinner!

Happy Birthday JackOOOOOO!!!!

Love, Jess

Too Many Variables

Last week I had meeting with Jack’s support coordinator to organize his plan for the fall — via Zoom, because that’s how we meet with people now. 

Although we love our support coordinator (she’s organized, smart, kind AND she returns my phone calls), I got off the phone feeling exhausted and not really sure if we had accomplished anything productive. We kept throwing out dates and ideas and then going back to other dates and ideas. Honestly, I’m not really sure what we came up with or if it makes sense.

The only way I can describe it is as a giant algebra problem without enough information to solve it. Too many variables.

Now that Jack is an adult, he receives a budget, through DDD, to pay for activities. Last winter we’d found a wonderful day program and he was scheduled to start on July 6. We had budgeted for him to attend the program 5 days a week for 6 hours a day and then knew exactly how much we had left for other things like at-home support and a variety of therapies.

Then COVID-19 arrived.

The day program closed and the last we heard they’re hoping to reopen after Labor Day. If life were normal, we could plan accordingly. We would correct the budget and plan to start on September 8 — but life isn’t normal.

Not only does the program not have a definite opening date, they don’t know exactly how they plan to open and whether or not they will be excepting new clients right away. And, this being a new program for us, we’re not sure if we will feel comfortable starting immediately once they open their doors. So many safety concerns. We can’t send Jack until we are completely confident that the program is safe. 

BUT what does SAFE mean now?

Perhaps it means that the program is smaller and thoroughly cleaned every day. Perhaps it means they will stagger the hours for their clients, so that social distancing will be easier. Perhaps it means that every client will be provided a one-to-one to help keep everyone socially distanced and wearing masks. Perhaps it means there’s a good vaccine and/or treatment options. Perhaps it means that COVID-19 disappears magically.

Once we decide what SAFE means,  Jack might be able to start a day program, but will that be in October or November? It’s more likely that we won’t feel confident until January or February or March or . . . . ahhhhh!

How do we make a plan when we don’t have any dates?

Jack’s budget does provide at-home support and Jack’s caregiver, Maria, (and Anna, when she’s home from school) will continue to work for us, but we need to be careful about how many hours we use. If we use too many hours, we may not have enough in the budget for a day program once we are ready.

Since COVID-19 burst into our lives, I’ve gone through a lot of emotions. For a while, fear was all I could focus on — fear of leaving the house, fear of the groceries carrying germs, fear of opening the mail. Then I went through weeks of being exhausted from washing down groceries and by the energy it took to plan simple outings like going to the post office. Then, I seemed to flip and felt bored and useless — checking off days on the calendar when I couldn’t think of one significant thing that I’d accomplished. Depression was creeping in, and last week’s phone call with our support coordinator didn’t help.

It’s not just the unknown about Jack’s plans. As I look at the next couple of months, we have plans, but know that they are subject to change at any time. Our trip to Block Island, Anna’s return to school, Dan’s office reopening. Everything is fluid these days and it’s starting to really get to me.

Our family is pretty good at adjusting. We’ve been able to zig and zag through a lot of things that have come our way, but the problem is that COVID-19 doesn’t have — even a hint of — a timetable that we can glance at to know when life will return to something that feels normal.

I like to wrap up these posts with some “glass half full” statement or something to make you laugh, but I can’t think of anything today. Sorry. This suck. I hate COVID-19.

Love, Jess

Wear a mask. It might not be perfect, but at least it makes many of us feel a little safer.

Okay — I won’t leave you on a bad note. Here’s a fun picture of our new dog, Tupelo.

Special Education Mom

Joanne’s beautiful boys in their younger years

I adore my friend Joanne for many reasons. She’s an extraordinary blend of Brooklyn tough, brilliant mind, and the warmth that comes when you’re faced with caring for your special child (in her case two children with special needs). She also has no fear of sharing a large pizza, farmer’s salad and an order of crostini with me at Arturo’s without mentioning the calories (ohhhhhhhh, how I miss those lunches).

When COVID hit, while I was focusing on how I was going to manage getting groceries and how long my hair would hold up before showing it’s true colors, Joanne was researching the law and contacting the State about resources for her sons. 

Four month into this, I’m finally in a full blown panic about what’s next for Jack and I haven’t been sure how to share it in words.

I don’t need to. Joanne has done it for me AND she shared it on CNN.

Keep fighting/advocating Joanne. Ben and Sebastian need you. Jack needs you. No pressure — but the entire special needs community needs you!!

Please click below to read her post and don’t forget to watch the CNN piece!

CNN

Love, Jess