in these moments

We heard from our CW yesterday. Everything is set so far, she was finishing up our home study & we’ll have our final home visit on Friday. FINAL. Whew.

The last eight hours of our PRIDE training went well. One of P’s friends had aged out of the foster care system years ago, and came in to talk to us about his experiences. It was a really good few hours, and I know I’ll have a million more questions for him as we move forward with this.

One of the things we talked about really hit me hard. it was a conversation about how, in the interest of honesty, our trainer told us that at some point in our lives we WOULD be investigated, their would be allegations of child endangerment that would need to be looked into. It’s such a common thing, to expect it.

P took it like, “Well, we’d have nothing to hide, so bring it! That wouldn’t bother me!”

I took it differently. It’s scary. Not that we’d ever have something to hide; but the reality of opening our lives us in this way. It’s a lot. More than a lot. I started thinking about how our lives will NEVER be our own, not while we’re fostering. We won’t get family vacations or trips to the zoo downstate. Every bump and bruise will have to be reported, every scratch. Our door could be knocked on at any time, the children in our care taken without our knowledge to be questioned.

I understand why. And I understand that these kids have come from bad situations and need to be protected from more of the same. We’re going into this with our eyes as open as we can.

But I can’t pretend it isn’t a sacrifice. I can’t pretend I didn’t cry over my FB friend posting about her pregnancy because some people will never understand the struggle we’ll have to help these children, things have come so easy to them. The fact that she’ll get to post 100 pictures of her little one’s smile and laugh and doing silly things. We won’t get to do that.

Part of this journey, for me, is going to be learning how to share my joy. Because I don’t want to pretend this isn’t happening, I don’t want to do this in secret or just not talk about what is going to become the largest part of our lives.

It’s like the fertility struggle itself. I have someone whom I love very, very much say to me the other day, “What do you mean it sometimes makes you feel like less of a woman?? I had a hysterectomy – does that make me not a woman??”

I had to (as calmly as I could manage) tell her, “I know you’re coming from a place of love; but my ability to have children was taken from me at either childhood or shortly after adolescence. You had two children. You can’t know what this is like.”

It’s sort of the same feeling, if that makes sense. 99% of the time I’m so grateful to be given the opportunity to foster. And the husband I’m with, the family & friends. But 1% of the time I want to throw myself on the floor and cry because it feels like everything I have takes me longer to get than anyone else, or I have to do it in a different way.

I know there’s no “normal”. Somedays, though, I’d like to be a lot closer than I am now.

(and this is what anxiety and uncertainty do for me *sigh*. I’d better learn some new coping mechanisms.)

the hardest part

Patience.

I have so much trouble with it. Not with other people, but when it comes to things I’m working towards or wanting…a package to arrive, a phone call to come. I settle into this antsy state that keeps me from sitting still, from focusing on anything beyond wandering up or down the stairs looking  into rooms only to sigh and wander off to another part of the house.

Laundry needs to be folded. Floors cleaned. Dishes put away.

Instead I’m snapchatting my niece goofy pictures and texting my best friend about how my brain is being sucked out of my ears because WAAAAAITIIING.

Our home visit went really, really well. We had to install a carbon monoxide detector. That was it. Otherwise she told us she loved our home and everything looked great. Our first twelve hours of PRIDE training is completed. We do the last eight hours tomorrow.

Our case worker started writing up our home study on Thursday, and told me we’re the next family she wants to focus on. She had two questions for us : one because of some financial docs I’d forgotten to include, another was having a background check done on my Mom who will be our alternate care giver.

So, what happens from here? How close are we? I haven’t found any definite answers : are we done when she writes our home study? Is it just waiting on the state to approve the license then? And, if so, how close will we be to that “first call”? Our county is in great need of foster parents, so I can’t imagine it’ll be long.

It didn’t help that a FB friend announced her pregnancy yesterday. I’m so happy for them, but it ignited this “hurry up and get here, little one” feeling that intensifies every time I look into the nursery and at the empty crib sitting there. My heart, our home, our lives are ready.

So ready.

whirlwind

Life has been kind of insane lately.

That kind of wonderful insane that sneaks up on you sometimes. The kind, now that we’re moving forward with fostering, I imagine will be our lives for the next … oh, forever.

We’ve been looking for a house with not much luck at all. Suddenly, about a month ago, P found three of them to look at. We went with the second one.  We’d been worried that although there was technically enough room to foster in the other house (which we didn’t love anyhow), we’d feel cramped.

The new house is bigger. Brighter. Every corner feels full of sunlight and hope and every other cheesy thing I can think of to say. In short, it feels like HOME. It took us a couple of weeks to get settled in, the kitchen is still not great, but we’re here. The cats have found their favorite napping spots.

Last weekend we went out and bought a bed for the second room. The room that will be home to we-don’t-know-how-many children. As we were putting it together, the two of us got really overwhelmed and emotional. This all feels really huge and scary, but RIGHT. Since, in our hearts, we want to start with young ones, we put the crib together. We have the extensions to make it a toddler & bigger-kid bed, but crib felt right. We’ll see.

We have ten hours of training next weekend, and our first home visit five days later. Although I know there’s not much to be nervous about, I still am a bit. And I’m sure I’ll be even more nervous as it gets closer.

Not too much longer until we’re tucking someone into bed in this little room. Until our house is full of laughter, and cat chasing, and finger painting, and tears, and messiness. Sleepless nights. Questioning ourselves but doing the best we can.

I am so ready.

 

What We’ve Decided

Although my diagnosis was a shock, we knew that we’d have issues conceiving. We’ve talked about, literally, every available option. Guys, we were batshit crazy at times. Whew! The things we talked about. The ideas that made sense to us for a few frazzled minutes! Not anything illegal, but our minds went silly places.

These choices are, obviously, a personal decision for every couple. With all the data in front of us, and being completely honest about what we want going forward and what matters to us, we have decided to become foster parents.

I could list all the reasons this is what we’re doing (and if anyone else is facing this & wants to talk about it – PLEASE feel free to get in touch with me!) but instead I’ll just say : OHMAHGAWD!! This process… whew!

We’d already looked for a few years into this option, so knew as much as someone who understands something intellectually but has NO CONCEPT of the reality can! We are nervous as hell, excited, scared, a little proud of each other.. all of these emotions, and we haven’t even hit the first home visit yet!

P and I live in a fairly small house. We’re renting until he graduates in around two years (he recently went back to school) and we’ve been in this place for two and a half years. There are a lot of issues with it, but the most glaring now that we’re going to foster is that there’s this weird little staircase in our bedroom that leads up to a half-attic, and that half-attic has no windows, no exit.

Although our case worker told us that there’s a work around since no one will technically be living up there, P and I have been looking for a new place for over a year. We just haven’t been happy with our living situation. In that year, we’ve found exactly one place to look at. And it was worse than where we’re at.

Until last weekend!! When my wonderful husband found three places for us to tour! Two of them were pretty great. We’ve decided on the second one of those. It’s bigger than where we’re at, and just has so much potential. As we were walking through it, I just kept imagining filling it with little toyboxes and book nooks and I could feel the excitement in my heart bubbling up all champagney. That feeling is how I know we’re on the right path for us. And the smiles when we talk about what we need to get ready to welcome whichever little one(s) the universe sends us.

We’re just waiting for the final okay from the landlord and our move-in date before we move forward with anything else. So far we’ve had our initial interview, been fingerprinted, and filled out roughly 1/4 of the metric ton of paperwork we’ll need to finish before our final foster parent approval.

One thing you should know about me? I have absolutely no patience!! We dropped off all our info with the landlord a whole day and a half ago and haven’t heard yet. So I’m spending today antsy and just really wanting to know.

P says, “The world doesn’t work on your schedule, Jen.” and he’s totally right, I need more patience. But, dang, some days I think it should 😉

deciding what matters

 

We came to terms with what the doctor’s words meant for us, for the time being.

A little while later, P and I faced some job changes and decided to move. We’d missed years of watching my niece & nephew grow up, and realized how much we wanted to be a part of that. All settled into our new place, they spent one weekend a month with us. My sister and bro-in-law appreciated the time to be a couple, and we loved having fun with the kids.

The Royal Wedding on My Little Pony? We did that up right : made crepes with yogurt&fruit filling, paper crowns we decorated ourselves, and grape juice in champagne classes. There were long walks to get ice cream. Long talks with my niece about boys and dating while P and my nephew defeated a boss in WOW (although nothing was gender-specific LOL, sometimes it was P helping the niece slay a dragon while M and I talked about school and bullies).

It was a great time.

We adopted two cats who had been crated for eight years of their lives, adding them to our not-impressed Princess Cat’s life. They were the cuddliest little things ever, and although three cats is a LOT (and maybe two too many) after the first night, we couldn’t imagine our space without them. Truthfully, they’re kind of like two stuffed animals 90% of the time.

I decided to take my health firmly into my own hands. Although I felt better since the move, I knew I wasn’t at 100%. I did a lot of research online, read about how some women do better on Armour replacement rather than Synthroid. I’d also read some old studies where women with amenorrhea  started t3 therapy and the issues resolved. I got hopeful.

For a while I took myself of Synthroid and started OTC medications until I found a doctor willing to Rx Armour (don’t do this – yes, in the long run it was helpful in my case, but it was DANGEROUS!).

Changing my medications was amazing for me. My body felt different. I lost the “thyroid slump” in my shoulders. I got better sleep and had more energy. It was around this time I started asking myself how I could’ve functioned before. How I got through the years (& years) of dragging myself through life. Life was amazing, and fun, and I was involved.

But I still didn’t get my periods. 

Through the last couple years of this, P and I had many many discussions. About if we couldn’t, if I couldn’t. What it would mean. How I would never want to take away P’s chance of having a biological child if it mattered to him. We talked about IFV, adoption, fostering. All of it. We weren’t quite ready to give up hope yet.

One day at work, two months ago, a woman mentioned a new homeopathic doctor that had just moved back into the area. She sounded like a godsend, and I made an appointment. I also made an appointment with a OBGYN to see what would happen.

The OBGYN visit went as expected. I spent an hour giving my history to the nurse, then a med student, both of whom sounded hopeful. “Yes, if your thyroid is off, it would be expected that other things could be as well.” And then the doctor walked in and said, “You will never have natural children. You’d have to go with IVF. It is risky and we wouldn’t advise it.” When I asked her why,she said that we would never know. I pushed her to get some genetic testing done – I had to have answers in order to be able to move on.

The naturalist was completely different. Full hope and possible solutions.  She was going to a conference the next week and wanted to discuss my case with colleagues.

In the meantime, my results came back. The OBGYN called me in again. This time she was open and warm. She told me that I have the mosaic form of Turner’s Syndrome. She explained all that meant, that most likely my ovaries had failed in childhood and I would never conceive naturally. She hugged me before leaving the room.

Although you’d think I’d be devastated (and I’m not saying I haven’t had some moments of sadness), this THING we’re up against finally had a name. There was finally a reason, and one that I could understand. I think the years I’d spent preparing for the truth helped.

So now we know. And now we’ve been honest with each other about the fact we want to raise kids together. That we both feel it’s so much of the reason that we’re here.

We have options to discuss, decisions to make. None of which involve my genetics, which is okay with me. Some of which involve P’s.

There are long midnight talks with lots of laughing, and I can honestly say that I have married the right man for me. We’re moving forward on the path we feel has been laid out for us, that maybe we could’ve started down years before if the right doctor had found us.

But we’ve come to believe that may mean the right child might not’ve been waiting for us then.

diagnoses! I have none!

 

Part of why I married P was the way he was around children, specifically my nephew M. M is somewhere on the spectrum. He’s a sweet, funny, gentle boy (now teenager) that things affect really deeply. Somewhere in the back of my mind I’d imagined having to end relationships if the man I was with didn’t see that same awesomeness in M.

P did. The two of them were fast friends, sharing video game knowledge and jokes (M’s sense of humor is really sneaky, he’s one of the funniest people I’ve ever met but you’d never know it until he wants you to). I watched P gently guide M out of bad moods, where he’d be really close to a melt-down, and P would have him laughing without P giving in or pandering. P never raised his voice in frustration, instead he would guide my nephew with a loving stern-ness which was the same way that my sister and her husband handled their kids. 

Even though in the earlier years of our marriage, my sister and her family lived hours away so we didn’t get to see them as often as we’d all like, those times really stuck with me.

So gently our talks went from how our future would be traveling and friends, to how much we wanted a Little (or three) of our own to raise.

We decided to get answers, finally. To learn what we’re up against.

We went back to that same doctor. I laid it all out for him, again, and told him that my issues HAD to be chemical because I already knew that everything physically was there (the doctor when I was younger had also done ultrasounds and nodded at how normal they looked). I felt that if my thyroid was so off, other things had to be as well. After some struggle, he agreed to run some preliminary bloodwork.

The next week, his office called. “Everything looks fine!” the nurse chirped at me.

“It CAN’T be fine. There’s no way.”

“Well, it IS fine. What do you mean?”

“Like I told the doctor, I went off the pill two years ago and I’m not having periods – ever. Structurally everything is there. So, again, it can’t be fine.”

“Let me talk to the doctor.” long pause. “No, he says it’s fine.”

“So what do I do from here?”

“What do you mean?”

“If I’m still not having periods, what do I do from here?”

“Well… you could see a specialist.”

“Isn’t he a specialist? A reproductive endocrinologist?”

“Yes, but. You could see another specialist.”

We lived around the block from another reproductive endocrinologist and made an appointment with him. He was inside a fertility clinic, so we were doubly hopeful. P made sure he could go with me, to make sure I didn’t forget to ask anything (which was equal parts annoying and endearing).

The morning of our appointment, after a short wait in the quiet lobby, we were pulled back into a room. The doctor was in with us quickly.

“It looks like the nurse misfiled your labs, instead of in your file she put them in ‘incoming’. That’s ok though, she’ll grab them while we get started. So, generally when a woman isn’t ovulating we’ll start out with this medication. It’s sort of working backwards, but helps most women in your situation. We can inject you today, and then-“

The nurse interrupted him by handing him my file. The doctor’s face dropped.

“These labs…” he said.

“My doctor told me they were normal.”

“No, no they aren’t. Your FSH is extremely high-” He pointed to the sheet where it was showing a 40, and clearly marked as “HIGH”. Why the original doctor’s office hadn’t told me, I still don’t know. “With an FSH like this, well we can’t work with you. There is always egg donation. That’s where you’ll have to go. It’s very expensive though.”

“WHY is my FSH high?” I asked.

Shaking his head again, “We don’t know. Here’s some literature on egg donation and IVF. When you’re ready, call our office and we can get a referral for you.” he left the room.

I think we spent literally five minutes with him after he saw my labs.

P and I numbly walked out to the car, and both burst into tears as soon as we closed the doors. It’s hard to explain. Something we hadn’t even known we wanted so badly, until it was taken away. With no explanation. With no one even bothering to try and FIND a reason.

But we’re resilient, P and I. Or partially delusional lol. After a day or two of sniffles, telling ourselves it didn’t matter and we had a wonderful life together, it got pushed onto the back shelf again and life got in the way. We’re young, we have time, and The Universe had a master plan for us. Even if we didn’t know why. Even if we didn’t know what it was. There was adoption and fostering and IVF and there was no clock for us.

We had time.

Gaining an Ally.

P and I moved quickly. Two days after we met, we went on our first date. And, since then, I think we have talked to each other every day. It was love, we were in love, we even loved our love. We were living together three months later, and he asked me to marry him right afterwards.

It was crazy and fast, but it was right for us. We waited another year and a half to actually get married so that we’d have time to settle in and really get to know one another. Christmas Day will be our five-year wedding anniversary, so we seem to be doing ok so far 🙂

I was always very up-front with P about my medical issues and how it might matter to us in the long run if we wanted children. More pressing at the time was that I seemed to be doing really terribly on Synthroid. I had dry skin to the point I’d wake up crying. The insomnia I’d always fought became worse and worse. There were times where I’d get two hours of sleep a night for a week, then crash like crazy.

I was able to work my full-time job and keep the house clean, even to hang out with our friends. I look back now and don’t know how in the hell I accomplished that.

When things got super bad, P would ask why my doctor (an endo in our area who was supposed to be “amazing”) couldn’t make me feel better. I remember breaking out in tears telling him that doctors wouldn’t listen, couldn’t fix anything, and didn’t even take the time to try. I could tell he thought that I was over-reacting. So I took him to an appointment with me.

We sat in my endo’s exam room for half an hour before he finally came in. “What’s the problem today?” “Well, I’m having very dry skin, sometimes I’ll have to take a bath at 3am because it’s woken me up. And I’m having a lot of trouble with insomnia.” “Hmmm. Dry skin would say you have too much Synthroid, insomnia too little. So we’re going to put you right down the middle where you can get pregnant and leave it like that.” And then he walked out of the room.

P was absolutely stunned, could barely talk from anger after we left. From that moment he’s been my biggest health advocate, always making me feel that I have the right to push for answers when it comes to feeling that something isn’t right.

False Answers/The Hypo Solution

 

When I reached 20 years old,  I hadn’t started menstruating yet. Although our family didn’t talk about it much, it was a known thing. I don’t know why we weren’t more concerned? I can remember feeling embarrassed and shy about it. Wanting answers, but also pushing them back because it would mean actually having to talk about it. I was living on my own (going to University and working), so I’m sure my parents felt if there was still a problem I’d have come to them about it? I kept remembering that Pediatrician and telling myself that he could’ve been off by a year or so.

And then things started happening. I gained weight, started losing hair (although I’ve always had super-thick hair, so it wasn’t all that noticeable). I started getting cold all of the time. After a lot of pushing,  I went to our doctor.

Our doctor did some testing and diagnosed me with Hypothyroidism. This was not a big shock coming from the family I do. I actually felt like it was dumb of me to have let it go so long, I knew all of the warning signs and symptoms!  I started on Synthroid. At the same time, I did bring up my lack of periods, and he seemed puzzled but decided to put me on the pill to see what would happen. The doctor told me the amenorrhea probably had something to do with Hypothyroidism, as I had a goiter and he told me “You’ve had this undiagnosed for at least seven years, I’d say!” so that fit in with the timeline too.

24 days later I had my first period, and continued to do so every month just like I was supposed to. For the first time in my life, I felt like “A Real Girl”. I would (quietly, to myself) jump up and down every month at the first sign of cramping. Didn’t this mean I was just like everyone else? That all the worrying had been for nothing? I convinced myself that because I was having them on the pill, I’d be okay. That there was a way to make my body do what it was supposed to, and we had found it.

Life went on from there. I moved to a bigger city. Had my first serious relationships, and then my first not-serious-at-all-but-fun ones. I was either never in a relationship where my partner wanted children, or was with someone who wasn’t serious enough to even have those conversations. So I allowed it to move to the back of my mind and I got busy living.

And then, eight years later, in a crowded bar with one of my best friends laughing in my ear, I saw P walk in and sit down to order a drink.

In the beginning …

I was diagnosed – officially, finally – with the mosaic form of Turner’s Syndrome less than two weeks ago, but it’s been a long path to get here. I am 37 years old.

There’s very little information out there, and most of it is on Turner’s Syndrome itself, and not the Mosaic form. Because we’re all different. Because this syndrome shows itself in so many different ways, and we can have any/all of the associated issues.

And when I looked to find a support group, so  many of them are for expectant mothers who are trying to make the decision of whether or not to continue with a pregnancy when they’ve discovered the daughter they’re expecting has this syndrome (I’m sure I’ll write more on that later).

So I’ve decided to tell my story. Because maybe there’s a woman out there looking for answers too, who needs to hear that she’d not the only one questioning and wondering and hoping.

So, here’s where it started for me.

I was born to two young, energetic, loving, growing people. Neither of them had any medical issues, although eight years later my Mom would be diagnosed with Hypothyroidism. They’re both normal height. I was first born, and had no developmental issues at all.

Two years (+ a handful of months) later, my sister was born. Silent beautiful movie star to my red-faced screaming in our baby pictures. It’s funny because we grew up completely the opposite : I’ve always been the more reserved one, while my sister J is the one who eats up life like she’s got no choice.

I developed normally. I started reading at two (Mom claims I taught myself because it was “just something you wanted to do” and “you’re stubborn like that!”) and have been a Reader since then. I got all “A”s in school until freshman year when I had to actually work at it, then it was mostly “A”s with a coupla “B”s and maybe a “C” in math thrown in.

I was small for my age, and by 3rd grade had slowed growing. I’d only gain an inch or so a year, while my sister gained three or five. Both of my Grandmothers are short, and my parents chalked my height up to that, although they did take me to a Pediatrician just to be sure.

The visit wasn’t that big of a deal. He x-rayed my hands. Told my parents that there was nothing to worry about, I’d be lucky to hit five foot, but I still had more growing to do. They could try growth hormones, but it wasn’t really worth the risk, and five foot was still fine for a girl. He mentioned that if I didn’t start menstruating until I was 18 or 19, that’d be great, it’d give me more time to grow.

At 12, I developed breasts. High B/Low C which was small for my family, but okay everywhere else. I hit 4’11, which has always been fine with me. And, I learned quickly, a great way to meet guys since it seems to be an awesome icebreaker.

My sister started having periods at 10. And it was weird for a little while, and it bothered me occasionally. But there was still that Pediatrician who, as my Mom reminded me, told me I would just develop a little more slowly and it was okay. A year later my younger sister was diagnosed with Hypothyroidism as well, but that seemed to be a bullet I’d dodged, although almost every female on both sides of my family for generations has it.

Not many people knew, and in every other way I seemed like every other girl. So, for a long time, that was okay too.