When we need help, we save each other right? Isn’t that what Glennon over at Momastery tells us? That we belong to each other? That we are our sister’s keeper? That we can do hard things? That LOVE WINS? Well, if that’s the case, then maybe we can try to make Glennon and the Love Warriors and the Love Flash Mobs proud of us this month. Because we need some miracles, and you are my miracle-working tribe.
Back in 2012, I met a woman in a Facebook group, and we had a lot in common despite the geographical distances. We go to be friends, and she was a huge source of compassion when Murphy went through the proverbial Summer of Hell, where he broke one arm on the monkey bars on the first day of summer, had 12 stitches in his cheek two days later, sprained an ankle two weeks after that, got the cast off his arm, broke the other one ten days later in The Tragic Battle With Beyonce at the top of Clothes Hamper Hill and then crashed into the Ehlers-Danlos (EDS) diagnosis at Children’s Hospital of Philadelphia head first. I’m going to call her Emily*.
It turns out that God, the Universe and the Great Cthulu have weird ways of bringing the people you need into your life to you exactly when you need them if you look back and notice it. And it seems that then, and in the years since, Emily and I have needed each other a bit. See, while I was processing Murphy’s EDS-III diagnosis and doing all of the terrifying follow-ups with specialists, she was looking at her five children and wondering if maybe they weren’t dealing with the same things.
It turns out that they were. She and her three oldest children have Classic EDS. One of the little ones also has Postural Orthostatic Tachycardia Syndrome (aka POTS), Dysautonomia and Type 1 Diabetes. Sounds like a lot of big scary medical things, right? They are, but they’re manageable if you know about them. It takes a lot of time to wrap your head around what everyone needs, though, and any mother with a child with multiple medical issues will shrug that off like whatever. I realize that those looking in from the outside think that we are badass babes who conquer the world because most of us make this stuff look easy. Some days we do. Some days I don’t, and those of you who are my real friends and Facebook friends know that I can be open about that and how hard it can be. Some days we know it’s our kids who are doing the hard work and we’re just facilitators. A lot of you love Murphy, and you watch his unique way of dealing with his medical issues and his medical providers. Emily has one like that, too. Kids with these conditions rock and roll and are tough as nails. Most moms will tell you that we admire our kids and wonder about the source of their patience and strength.
Yeah, she’s smiling there. These kids are amazing. Oh, you thought Murphy was unique in his ‘tude about doctors and being poked and prodded? Nope. Every child with a chronic condition is unique, strong and inspirational.
So, while I was learning how to be The Kraken and terrorizing the Tredyffrin/Easttown School District, Emily was busy out in Colorado getting her kids situated in school and with doctors. The thing about EDS is that once you know how it’s manifesting, and you are managing it, it’s just a thing you keep in mind. It’s not a nothing, but you integrate it into your way of living, and you keep on living. And about that time, my other friend Gwynne was being diagnosed with it, too. And so we had a little group of EDS-diagnosed folks who were learning as we went along, picking and choosing our battles with doctors and schools, and crying and laughing through triumphs and tribulations.
A while back, Emily told us that she and her husband, Todd* had decided to become foster parents. She’d had a tough childhood, and once things stabilized with her own kids, she knew that she and her family had room in their hearts for another child who needed them. I was amazed. They don’t have extended-family support (also like me). They have each other, and their own kids, and some good friends. But they’re on their own, and I know, and you know, on your own can be rough. And to do this? I was floored and impressed and worried that she would be overwhelmed, but I had faith that she knew herself and her family, and they knew what they were doing.
They cared for a baby for a while, and they rejoiced when her mom was able to be reunited to with her. When the baby arrived, Emily told me that she hadn’t had a baby in the house for a while; her own kids are aged 6 – 13. She didn’t want to ask people for money; she has pride, she’s responsible, she values her privacy, and she and Todd have always taken care of themselves. No one really wants to admit they need help. So I told her to set up an Amazing Family Wish List** and let us send her stuff. Like an online baby shower. Or a way for us to help them provide, at least physically, for those babies while this amazing family took care of the rest. And then the foster agency asked if they could take one-year-old twins.
Why is it that saying, “I need help” is one of the hardest things for us to do?
Now, my friend Phyllis has two sets of twins, and my friend Michele has a set of 2-year old twins. And I have much respect for moms of twins. Me? I’d have joined witness relocation if someone asked me to take some twins. Disappeared. Vanished in the night. Gone Girl. I can barely manage Cheeto and Nedward, let alone Fries and his gang of hermit crab outlaws. I would need help, too. Fleeing the country. But this friend? She and Todd and their kids threw open their doors and their hearts and prepared to welcome those babies.
And that did not go to plan because just as they were getting ready to greet those little guys, they found out that they had a sister who was 5. Emily and Todd talked about it, and they asked if they could be foster parents to her, too. They didn’t want to break up a sibling group because they are really good people whose strongest belief is in the power of family.
Often, foster care agencies are forced to break up siblings so that they all have a home albeit not together, which is really sad, right? The kids lose their parents, for a myriad number of reasons and let’s not assume those parents don’t love their babies. So it’s hard, miserable, disheartening stuff. And then they lose their siblings at the same time. They are, literally, tiny people who are stripped of every bit of everything familiar they have in an instant and thrown into situations that few adults would be able to manage.
“When siblings cannot be placed together, facilitating regular contact is critical to maintaining these relationships,” according to a 2013 Bulletin from Child Welfare Information Gateway. “Regular contact may even affect permanency outcomes. Findings from the Child and Family Services Reviews conducted in all States found a significant association between visiting with parents and siblings and both permanency and well-being outcomes.”
Things went well, they all moved in with Emily and Todd, they became a family of 8 kids (take that Brady Bunch), and they began to thrive. The twins’ food allergies were carefully monitored, and it became clear that they have some developmental delays. At 2, they are not meeting milestones, but this amazing family has figured out how to integrate the services, therapies and activities they need into their daily routine. Sort of like the Grinch whose heart grew three sizes? Only none of them were ever Grinchy. And with each additional child and each additional need, this family just makes more space in their hearts, their home and their lives. Because that’s what you do for your family, and when this family took these kids into their home, they became part of their family. There’s no distinction in their minds or hearts about “our kids” and “foster kids.” None of what they are doing has anything to do with making money. Anyone who has ever been a foster parent knows that there are easier ways to make money and much more of it. No, they love them.
The first time the kiddo’s social worker visited everyone, they learned that there was an older sister in a different home. She was struggling in lots of ways, and as a child with Down’s Syndrome, she didn’t have the coping mechanisms or cognitive skills to understand all the changes that were happening. She missed her siblings. At 7, she was non-verbal, and living in a group home with teens was overwhelming. Of course, my friends wanted her to come to live with them.
The social worker said, “Nope. Eight kids in this place is already too many. We can talk about that if you find a bigger house.”
Undeterred, as always in the face of all these things, because nothing stops her, Emily set about looking for a really big house where they could raise all of the kids together. That’s not an easy thing to do out in Colorada. That’s not an easy thing to do anywhere. Real estate is not cheap. But again, God, the Universe and Cthulu sent her in the right direction, and she found a great house. A big house with a lot of land in a great school district that could accommodate all the kids and was close to all of the medical facilities where they needed to keep appointments. And the landlord was really great and worked with them on the deposit and move-in date, and soon enough the clan had moved into this place, and big sister was visiting and then, with lots of joy and anticipation, she moved in with her original three siblings and five new ones.
And lest you think Emily is driving around in a giant Lexus SUV, no, she’s using this to get them all where they need to go, purchased used and given a great deal because they are great people doing great things.
Big sister is thriving in her new home with her younger siblings. She’s begun talking. The kids are raising chickens and ducklings and they have rabbits. They have a big yard, with tree swings, and space to run and play. They take trips to parks and lakes and explore Native American culture and go out for ice cream. Emily and Todd make sure to spend time alone with each of the kids so that they can be present and so the littles all feel valued. They ice skate and play in piles of leaves and plant gardens and go to school and birthday parties. They are living like normal kids who feel loved and secure and important. Life has been good, stable and the way we all wish it would be for our children for a while.
Last week, my friends learned that the landlord hasn’t been paying his mortgage. He’s too far behind to reasonably catch up on it, and that means that the house is going to have to go up for auction on June 28. And they really need help from all of us. I don’t’ say this lightly. I say this with all of my heart. They are doing the things we cannot or will not do, and they need help, and I want everyone who can to try to help. Because I wish I could foster children, and probably so do you.
They really want to stay in the house and raise these 9 hooligans there. In fact, Emily and Todd really want to start their own Foster Care Child Placement Agency for children with special needs. Much like everything else, having a child with special educational and/or medical needs is excellent training for navigating what is, at best, a labyrinthian system of interagency miscommunication and staying on top of complex schedules and appointments with myriad specialists. So many people, including caseworkers, don’t understand how to access the resources for special needs foster kids (or even their own special needs kids) who need help. Those resources do exist, but finding them, getting them set up and keeping them organized is hard. And so many end up in group homes and then age out of foster care and into adult group homes because while they need help, no one can help them to access it. Given the chance, they could thrive and lead productive lives with strong family connections, but the obstacles to accessing the providers they need are big and complicated. My friends have managed do this like bosses, and they make it look easy. And that’s not even it. They want to do it for more children and to help other families do it so that they can take in these desperate kiddos, too.
Here’s the thing, friends. The landlord was not forthcoming about the state of affairs for the house; he told them he was paying the mortgage, and we’d like to believe he’s tried to manage because we are good people, and we don’t believe anyone could want anything bad to happen to these kids. But the ugly truth is that he hasn’t made a payment since this special family moved in, and he’s not in a financial position to get that mortgage up to date or to keep it up if he does.
They need to stay in the same school district, and preferably in the same school in the same district, and as any parent of a child with a 504 or IEP will tell you, that’s not a “wish.” It’s like a big, huge deal, and you’ll do almost anything to not have to start from Square One again. Once you get things set up in a school, and the teachers and staff understand your kids, you stick with it. It’s hard work for me with one reasonably easy kiddo, one healthcare system and a school that twists itself into pretzels to accommodate his needs. They’ve got 9 of them. These babies are siblings, and it’s so important to keep them together, and to do that, they need room to grow. Emily and Todd have spent $2000 on an educational advocate so that one child can get her needs met at school. Another is in one of the best SNS programs at school and is making remarkable progress. So, we’re looking at expenses.
My friend estimates the house is going to go for anywhere from $290,000 – $350,000, and we’re not going to ask anyone, or even everyone, to donate that much. We believe in miracles, and God, the Universe and the Great Cthulu, but we get the difference between hitting the lotto, a dreamlike fantasy where money rains down from the sky and asking reasonable people for reasonable help. If they were to buy a place and be done with the rental rat race and keep the kids together and stable in one place, they’d need around $60,000 – $80,000 as a down payment, which we still see as pretty impossible and a dream.
Instead, we’re asking for you to give what you can toward a random goal that some guy named Jared on GoFundMe just recommended. If they need to move into a new rental, they’re going to need money for moving, first, last and security and all those other expenses we never think about until we move. They have somewhere between 3 and 5 months to find a new place, barring a miracle.
I know what housing insecurity is like. Some of my friends know, too. Emily and Todd know. I know the desperation to keep your children safe, warm and in a stable school environment. I’m about to take this big, huge, leap of faith into the unknown, and I am short about $5000 myself to do it. I’m still weirdly zen, which I’m starting to think is some kind of next level to panic (like if you move all the way through extreme, unfettered panic, whatever is on the other side is this weird zen-like state of altered reality wherein you believe everything is going to be okay). I’m still feeling like the Universe is sitting on my Serenity Bench with me.
But Emily and Todd are not there. They need a human miracle this time with some sprinkles of heavenly angel dust and the guidance of the Universe and the raised eyebrow of Cthulu. And they need me, and they need you.
*Emily and Todd are not the real names of my friends. The photos are genuine, but please, if you recognize them, respect their privacy. If you would like to verify the statements in this story prior to making a donation, please contact me at [email protected], and I will provide information about them and the home that will enable you to be assured that this is a true story.
Want to help me and Murphy move? We could sure use some final assistance to get us across the finish line. Want to help us with our brand new start that we cannot afford? You can donate to The Kraken’s Relocation Fund. Every last dollar will go towards helping us to not live in a tent on the beach during hurricane season (concrete walls do help) and will secure a bed in which to sleep when you want to visit paradise.
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