Twenty-nine years ago my best friend, and the love of my life, was born. People are often startled when they hear how young he is given how maturely and responsibly he behaves. He has more inner strength and character than anyone I’ve ever met and I am so blessed to be his wife.
Happy Birthday Honey!
I’ve written before (here, here and here) about my struggles with depression. It’s not something I enjoy talking about. I’m not embarrassed by it, I just have a hard time explaining it to people who haven’t experienced it so it’s just easier to not bother. Also, it’s not like it comes up in casual conversation. Most people don’t know when I’m struggling because I’ve become very good at maintaining my “public face.” I do it out of habit and out of necessity but it is exhausting.
Pretending that you are “fine” when you have a heavy weight the size of your fist in your chest is hard work. Smiling and talking when you would rather just sit and stare at a wall is hard work. Cuddling and loving your darling son after a very long day of wearing your mask is hard work. Eventually that mask has to crumble, it’s not possible to go on day after day and not get worn out..to not get emptied out, emotionally. It’s not possible to keep taking hit after hit emotionally and keep your balance. Sooner or later you hit a tipping point. I have hit mine.
I can’t tell you precisely when the slide started, depression is sneaky like that. It has always been cyclical for me…I slide, I struggle, I rebound. Twice I’ve struggled to the point that I sought outside help but for the most part I’ve been able to get through it. It is very hard for me to ask for help. I always assume it will get better and, eventually, it does.
I assumed that is what would happen this time too. There is no reason for it not to. I am very happily married, I have a son I love more than life itself, I have a good job, our finances are good, our future looks bright. There are, of course, issues…everyone has them they’re part of life but there are no issues I would expect to tip me off balance. In the past, when I’ve needed help, there have been major outside issues that influenced my emotional state…stress, fear, hurt, loneliness, etc. None of that is true this time so I assumed this would be one of the lower points but that I would ultimately be OK.
Somehow though this turned into something bigger. The slide did not stop. I began to wonder if this feeling would ever start to lift. I withdrew emotionally into a shell, the only pieces that seemed to escape were bright flashes of anger and frustration and shame. I knew I was not at my best but I had lost the ability to see myself clearly and to see how withdrawn I had become. I started to feel hopeless. I would think about the many long years ahead of me and wonder how I could possibly live like this year after year.
I would come home from work and go through the motions until Monkey was in bed. I used up every ounce of my energy getting through a work day and being his mom. I wasn’t always successful, either, which broke my heart. He has enough struggle in his life, he does not need a frustrated and short-tempered mom. Once he was in bed, I turned off. I would sit and mindlessly surf the internet or I would escape to our bed with a book. I would read or surf until I couldn’t keep my eyes open a moment longer, which often took until 1 or 2 AM , and then fall asleep. I wasn’t being a very good wife. Poor Duhdee was left with nothing of me but the worst bits.
Duhdee watched on helplessly throughout all of this. He suggested a few times that maybe I should see my Dr. and I agreed but I put it off. He would talk to me about feeling shut out and I felt awful about it. I would spend a few days or weeks doing better, being better, and I would even start to think maybe I was going to bounce back. It was all just too much work and I couldn’t maintain it. I would slide right back to where I had started. That feeling of hopelessness grew because I could not dig myself out, no matter how I tried. The feeling of letting down my husband and son was so incredibly painful to me.
Last month, Duhdee approached me again. This up and down struggle had been going on for almost a year now and he was reaching his breaking point. He sat me down and told me how he was feeling and I got angry. I wasn’t angry because he was wrong or being unreasonable but because he was right. Not very rational, I know, but I felt guilty and I immediately tried to justify myself and shift blame. A lesser man would have let the next few days blow up into a fight, possibly into one of those fights that marriages don’t fully recover from if they recover at all.
Fortunately for me, I was able to see through all my anger and see what an effect my emotional state was having on our family. He reassured me that I was not neglecting Monkey, that I was still being a good mommy to him. I knew though that I was not being the best mommy I could be. I finally decided that Duhdee and Monkey deserved better. I called my Dr. and had a physical. I asked her for a referral to a psychiatrist. I managed to keep that appointment despite the fact that I was willing to do almost anything to avoid it.
The Dr. had read my history, he knew about Monkey’s diagnosis and he knew a bit about FX. All of this set me at ease. He ran through one of those depression checklists and I was experiencing nearly every single symptom short of suicidal ideation. He looked at me and told me “You’re having a very difficult time right now. You are struggling and you do not need to be.” It was like an explosion in my head. I was sitting in that chair because I knew Duhdee and Monkey deserved better than what they were getting from me but it had not ever crossed my mind that I deserved better too. I told the Dr. I was tired of the ups and downs. I was tired of feeling like life was such hard work.
He has prescribed b.uproprion which is a generic version of W.ellbutrin. I’ve been taking it for just over a week today and I feel better. I felt better as soon as I left his office, in fact. Obviously it’s not the medication, it’s what he said to me as I left.
He said, “When you come in here in six weeks you are going to feel better. When I ask you if you are feeling better you will say “Yes.” When I ask you when you started feeling better you will not know when.”
That right there? It’s hope. It’s what will get me through until the medication can take over.
I told my mom last Sunday that I can see the light at the end of the tunnel. That’s not quite true but I can sense it. It’s sort of like standing on the platform waiting for the train to emerge from the tunnel. If you are paying attention, you will know the train is coming long before you hear it, long before you see the lights. You will be able to feel the light breeze it creates, as it rushes toward you, caressing your cheeks.
it was getting too long and I nearly fell asleep writing it so I’ll space this out a bit 😉
This past Saturday we celebrated Monkey’s 5th birthday! His birthday isn’t until Friday but this was the weekend that worked for the most people so we decided to celebrate early. He totally makes out because he gets presents from us twice, lol. We’re saving the big one for Friday…hopefully Duhdee finishes the preparations.
Last week was a blur. We had to pick up a lot of odds and ends for the party, we had to pick up some gifts, we had to order a cake. 3 out of 4 years we went to the grocery store bakery and had them put a cake together, last year we made one at home…this year Duhdee decided he wanted a really cool cake. We’ve decided that if we’re only going to experience this (raising a child) once then we’re going to make sure we all enjoy ourselves. The cake was a custom order from a nifty bakery in Belmont called Yum Bunnies. It was perfect. Duhdee told them we wanted a cake with tools, both power tools and hand tools were fine, with accents of yellow and red.
We loved it! It looked great and it was very tasty. Each year we seem to get stuck with more cake than we know what to do with but this one was *gone* by the end of the party. Monkey loved it too. He saw it on Friday, when they picked it up, and as soon as they got into the truck he started saying “Tools!” We had a very challenging time keeping his fingers out of it but we managed to do so long enough for everyone to get a peek and for people to take a few pictures…then his finger landed in the frosting.
Before we had the cake however we were all just socializing. There were 22 of us altogether and we can be a noisy bunch! Monkey circulated well. He played both inside and out, snacked on chips, drank out of his OWN glass (and not just out of any glass he could find) once I showed him it had his name on it, and snuck up on Papa (my maternal grandfather) 3 times to shake his hand! It was so nice that Duhdee and I could both relax and not have to tag team to keep track of him. None of this is in the category of “OMG” but it was a nice collection of new little abilities that made the day so much nicer.
So, when the time came for the cake I took Monkey aside on the deck (which was the quietest location I could find given the number of people in the house and the size of the sound system my cousin had set up in the backyard) and we had a little pep talk. I got down on his level and told him we were going to sing “Happy Birthday” to him, then he was going to blow out the candles on his cake and then he could eat his “tool” cake. Then I asked him if it was OK for us to sing for him and he said “Yes.” I asked him if he wanted to blow out his candles and he said “Yes.” I asked him if he wanted to eat his tool cake and he said “YES!” Alrighty, let’s go! He sat down, I asked him again if it was OK for us to sing and he covered his ears and yelled “NOOOOO!” Everyone cracked up and no one minded skipping that part (we are horrid singers…every last one of us, lol.) He then blew out his candles and dove in.
It turns out that I forgot an important step in our pre-cake pep talk. I forgot to mention the part where Duhdee had to cut the cake before we dug in…oops. Not too much damage was done, lol.
After cake was presents…he sat and opened everything which is newish…he couldn’t do this last year. Everyone was looking at him and taking pictures but he did great.
After presents was more chatting. By the time the last guest left it was time for Duhdee and I to clean up and head out for our night out while Monkey stayed the night with Grammy and Grampa. When we said good-bye he practically shoved us out the door, lol.
Phew. Five hours of decorating, visiting, partying and cleaning and we were beat but our night was just starting!
slapping me upside the head with a Monday. I’ll be posting about our fun-filled weekend starting this evening once I can get some pictures off the camera.
In the meantime, someone, please send Tuesday.
This morning, about a 1/2 hour before we left for school, Monkey came in to the bathroom and asked for help getting one of his bath toys out of the net bag they are stored in. I thought it was funny because he never plays with them anymore now that he takes showers and it was especially odd because even when he was still taking baths this particular toy was not one of his favorites. I helped him get out his wind-up Elmo toy and he took off happily.
Once we were all ready to go I noticed that he was still holding the toy. Duhdee asked him if he was taking the toy with him or if he was leaving it at home. Monkey did not respond but he started to put the toy down on the counter of his play kitchen. When Duhdee grabbed his coat, however, he stopped and decided to keep the toy instead. I took it from him briefly while he put on his coat but he quickly reclaimed it. MOST days he would have abandoned the toy at this point.
On the way to school we played our normal games, the latest of which is my torturing quizzing him on the colors of the M&Ms before I’ll let him have one. We started this game mostly because, if left to his own devices, he will only request RED M’s and we were running low on RED M’s, lol.
So, we arrive at school and Monkey was getting increasingly upset. Fridays are hard. He is tired by the end of the week and the last thing he wants to do is go to school, poor kid. I sat in the truck while Duhdee walked around to let Monkey out and I noticed he was still holding that Elmo toy. After I got out of the truck Duhdee asked him if he was taking the toy with him or if he was leaving it in the car, Monkey kept the toy. He has NEVER kept the toy past this point. Any time he has taken a toy in the car he ALWAYS leaves it in the car when we get where we are going. Interesting.
Now we walked into the school and down the ramp to his classroom and he is continuing to clutch this toy. It got to the point where he had to decide between letting go of Duhdee’s hand or handing over the toy to get an M from me. He let go of Duhdee’s hand. When we got in the classroom I had to take the toy away from him so he could take off his coat. He grabbed his picture from his cubby and ran to check in.
As soon as he was done Duhdee told him to come and make a choice for his first activity of the day. He began signing and saying “water” as he ran to the choice board. He picked the water table picture out of the array of choices and came straight toward me. Duhdee made him stop and read his sentance “I want to play water table” and directed him toward the smocks. At this point we had all realized what he had been planning over the last 45 minutes! I asked the teacher if it was OK to let him have the Elmo toy, normally they do not let the kids keep toys from home in the classroom during the day. She didn’t have the heart to tell him no once she saw how well he had planned this out. As soon as I handed the toy to him, his face lit up and he started waving and telling us “Bye!”
Our last look of him before we left was of him with his Elmo floating in the water table and a huge grin on his face.
Remember way back in March when I mentioned the book My Very Own Name? After I posted I decided to e-mail the company, just to plant a seed about perhaps offering the My Very Own ABC’s book in a format other than a board book. I explained a little bit about Monkey and the fact that he’s really outgrown the board books, he prefers the big boy versions.
I received a very nice and very prompt reply from Customer Service that they infact only publish that book as a board book. Exactly the response I expected but it was personal and not a form response which I greatly appreciated. Shortly after receiving that response I received another from someone else at the company. He too has a son with special needs and he took it upon himself to ask the author and the illustrator if they would allow him to have a special version of the book done just for Monkey.
They said yes. 
I cried when I saw it. Sometimes life with a special needs kid is hard. Sometimes people look at you and judge you. Sometimes people look at you and pity you. Sometimes special people do amazing things for special kids.
I can’t tell you how touched I was that this company went out of their way to create not one but TWO of these very special books and sent them to us, gratis. One has been put up as a keepsake, the other is opening up the world of letters for one very lucky little boy.
Nothing terribly exciting, just a to do list that grew and grew, lol. We spent a lot of time on Saturday shopping for odds and ends needed for various projects and then we spent most of Sunday working on the projects. We completed most of what we set out to accomplish but not everything. If it weren’t for my allergies we probably could have finished but I was dragging.
This is what Monkey looked like this morning:
That’s pretty much how I felt all day, both days. Minus the drool as far as I’m aware 😉
I just want to apologize to those of you who signed up for the webring but did not get activated. For some reason I’m not getting the notifications so I had no idea that people were waiting to be approved! My technicial genius ((Duhdee, not Monkey, but even Monkey would probably do a better job than I would in fixing it!)) will get it operating properly. I have approved everyone who was in limbo. If anyone has any troubles whatsoever please let me know!
We just had the best IEP meeting ever. Of course, given our history with these things, that’s probably not saying very much, lol.
The biggest issue about the meeting was the time. Duhdee told me 2:30, it was actually scheduled for 1:15. At 12:50 he called to explain the mix-up which left me NO time to get there. I ended up running out of my office, e-mailing co-workers from the elevator and grabbing the first cab I could find. He didn’t want to drive me there, it wasn’t far enough for his tastes! I’ve never heard of such a thing…it’s not like it was a $5 fare, it was a $34 cab ride to another city! ANYWAY.
The meeting went very well. It was the annual review and it unfolded just as it should. We did ask about the Therapeutic Listening and we’re still going to push for that but we’re going to pay for the equipment. He would otherwise be put on a waiting list for the equipment that the district already owns as we’d been told before…we don’t want to wait 🙂
We did not need to bring up the voice output device, the Assistive Tech specialist had already spoken to the ST and the teacher and had decided that he needs one. She is currently borrowing the Vantage Lite from the company and is going to ask to keep it for a few weeks longer to try it with Monkey. She doesn’t expect any issues so that’s the device we’re shooting for. She said she wants to try to get our insurance company to pay for it. Ahahahahahaha *cough*cough*snort*hahahahah. *Ahem* We wished her the best of luck and told her we’d get her whatever she needs from his pediatrician, etc. She acknowledged that the school will be responsible if the insurance company won’t pick up the tab but this way we would own the device and we could take it with us if we leave the district. If the school buys it we would have to give it back. So…we’ll try this route.
And that’s it…no controversy, no surprise issues. He’s doing well, they all see it. They’re impressed with the gains he’s made and see that he clearly can do better. Several times they took pains to acknowledge the fact that cognitively he is doing really well. They can see that there is so much inside him he can’t yet communicate clearly and that’s really all we’ve ever wanted. We don’t want them to look at where he is and think that this is the best he can do…we want them to look at him, like we do, and see how much better he can do.
