Little Mister T: The real reality

Having a special needs child is hard. Admitting to yourself and others that it's not easy or always wonderful is even more difficult. Our friends and family are always telling us how great it is that we stay so positive. We do try, but as another PKS mom told me a while back, eventually that ends and you crash into reality and start being honest and real. It's been a year and a half since Torsten was diagnosed, but there are still days that it feels so fresh and painful and raw.

Nothing that I've said or written about Torsten has been incorrect. However, we've left out a lot of the darker feelings and details that go along with his/our situation. The feelings that seem to follow me around are grief and guilt. I didn't even have a name for these feelings until recently, but "grief" and "guilt" seem to be a good fit. I may be driving to the grocery store and end up crying for 10 minutes before I even make it out of the car. Or wake up in the night and look at my sweet boy in the monitor, only to spend the next 30 minutes choking back tears and worrying about what his future holds.

The grief is consuming. Anyone who has ever lost a loved one knows that feeling - the loss, the ache and the hole that it leaves in your life. We still have our child, which makes us extremely fortunate. However, I grieve constantly for the childhood and life that I wanted for him and the child that we (all/most parents) assumed we would have. This feeling of grief leads to guilt, or more guilt than the usual mommy guilt. I want to be the mom who is just so grateful for my boy, and I am. But I also wish that he didn't have a hard time getting around, or that he didn't fall all the time, or that he could talk or articulate his feelings and needs, or that he didn't get incredibly sad for long periods of time without being able to tell us why, or that he didn't get sicker than his friends or siblings at the drop of a hat...

Although he's not old enough to recognize the things that set him apart from other kids, like his brother or sister, he is definitely showing signs of frustration. And the older he gets, the wider the gap grows between Torsten and his peers. All things considered, he's doing amazingly well in school. He generally behaves, and is now even able to complete a few multi-step tasks (washing hands, with soap, rinsing, turning off the water, getting a paper towel, throwing it away). He is in love with his teacher, Ms. Mitzi, and does his happy dance whenever he sees her. We're dreading the day that he moves up to the next class and leaves Ms. Mitzi and Ms. Sam, who we've all come to know and love. They have shown him love and compassion that I would have never expected from teachers. Not only is he their pet, he's a mascot of sorts for his class. When he walks in, the other kids swarm around him to give him hugs, kisses and pats on the head. I love the innocence of this age and wish that kids would forever stay as kind as they are at three.

Medically, Torsten is doing well. He's small for his age, but that's nothing new, and he generally stays healthy. He has a constant runny nose and his poor eyes are glued shut every morning, but we've adjusted and no longer panic, or think he's ill everyday. We're having some issues with his sacral dimple (tiny hole at the base of his back/top of his bum), and will likely have 1 very minor, and 1 not-so-minor surgery over the next few months. The first will be to clean it out, and the second (if needed), will be to cut the dimple out completely and prevent further issues. If the second surgery is necessary, which we believe it will be, we'll also have a very minor procedure done at the same time on his eyes, which will help with the morning "yuck".

He has had a few strange episodes of extreme fatigue, and on one morning, it took us 2 hours to wake him up. Of course, just as I was preparing to call 911, he snapped out of it and seemed fine. We got in to see the neurologist, since we suspected that he was having seizures in the night. She sent us for a quick EEG, so that we could get a baseline to compare to if/when he had another episode. We expected the results to show nothing, but unfortunately, they did show seizure waves, or background seizure activity, even though he did not have a full seizure during the scan. We're now figuring out the next steps, and are being scheduled for a 48-hour EEG. We don't want to make any assumptions or worry prematurely, but it's also something that we don't want to let go for too long.

We're also running down a list of common issues with PKS kids, and are checking off one at a time. Each "check" comes with an appointment with a specialist, and generally some tests/scans. We accidentally missed checking a few boxes since Torsten's diagnosis 1.5 years ago, but we're catching up this summer. Additionally, we're beginning the process of having him evaluated/diagnosed as autistic. We did not think that this would matter in the grand scheme, but we're starting to see some troublesome behaviors, autistic behavior is common with our kids, and autism is significantly more common and well known than PKS. Having the diagnosis can make it easier for doctors and therapists to understand some of the behavioral aspects and needs of our children, and our hope is that it will help us get the best possible therapy for T.

We finally got to meet ~50 other PKS families last month when we traveled to Chicago for the bi-annual PKS conference. We met such amazing parents, caregivers and kids, many traveling overseas for the occasion. This experience was life-changing for us and for Torsten. He believed that every activity was planned just for him. From swimming, to snow cones, to painting, to a bouncy house, and finally a petting zoo, the whole trip was a dream come true for him. And since we left Dane and Mila with Grandma & Grandpa Marquis, Torsten had us all to himself. He had such a ball and we were sad to leave all of our new friends to get back to the real world. The support that our PKS family provides on a daily basis is more than I could have ever hoped for. I don't know how I would have made it through the past year without them.

And last, but far from least, Dane and Mila are developing so quickly that we can barely keep up. Dane's vocabulary is growing by the day, or seemingly by the minute. It's terrifying to hear your own words coming out of the mouth of a baby! I've never been so conscious of both what I say and the tone I use, since both will be used again, verbatim, by my adorable 2 year old at the most embarrassing possible moment. Mila says "DaDa" constantly, and generally just eats, sleeps and smiles. She does have a *bit* of an attachment to me, but I know that ends eventually, so I'm soaking it up while she still thinks I hung the moon. Ryan and I are loving living in Old Town Lewisville, have amazing neighbors and particularly enjoy our 4 block commute to the distillery. We feel like we've found "home" and have no plans to ever leave this neighborhood. When people ask where we live, we tell them "Mayberry".

Life is far from easy, but I know that someday, when I'm missing the good old days, it's today that I'll be referring to. Every day presents a new challenge, but our lives are good, we love each other and our kids fiercely, and things are just as they should be.

Lots of love to all of you, from all FIVE of us,

Tasha, Ryan, Torsten, Dane & Mila