A good cry

Yesterday morning I had a good cry. A sympathetic ear, a comforting shoulder and some new perspective was offered by my husband. It was with relief and new emotional space that I faced the rest of the day and the tomorrows that will follow.

Space which was taken over quite brutally today. I came home after a hectic day of work to a husband worried about pain in his stomach. A worry I share wholeheartedly. He's just starting to get better and this pain could be the onset of a setback. I also came home to a very disgruntled unhappy son, who has a bleed in his ankle which pretty much rules out the sleepover he was so looking forward to. My heart aches for them both.

I think I managed to rise to the occasion in my own flawed way, but this was also due to the fact that I had had my cry and (almost literally) had room for them.

So today I am thankful for a good cry and the room it gives to deal with what life throws at you.

Hospital

When Tristan was little he was hospitalized 4 times. It was a combination of hypospadias and his hemophilia which made these hospitalizations neccesary. Besides being operated on the hypospadias, he also received a portacath, an implanted catheter which was supposed to make it easier for us to inject him for his hemofilia.
Because of his hemofilia, he had to stay in hospital a lot longer than any other child. First it took a day to get his clotting levels up to "normal" and then he had to stay while the healing proces went on. An IV with clotting factors was either attached to his hand or his foot during the whole proces. Amazingly enough, he has no trauma from any of these hospitalizations.
We do though! Although trauma might be too big of a word. But one thing we learned and adhere to strictly is to be VERY VERY ALERT during all hospital visits. A lot of things could have gone wrong if we hadn't been alert enough to pay attention to every detail.
I have mixed memories of all these hospital visits. One of the times, we were actually on vacation. He developed a high fever, sign of infection, and halfway the holiday I went to hospital with him. His portacath was infected and needed to be removed. So Herman and I spent the rest of the holiday travelling back and forth to the hospital by turns, driven by our loving wonderful friends each way. That way Marinda had her vacation and we each got a couple of days break. The funny thing is I have good memories of that vacation despite the fact that Tristan was in hospital!
Another time I remember him feeling perfectly well after his surgery. His first hypospadias surgery hadn't worked, and this was the second repair job. One of my friend made a gift box for him, one gift for every day. He got an extra long IV so he was even able to ride a tricycle through the hospital hallways. And that time we celebrated Marindas birthday in the hospital, in the rec room, with a couple of family members. During his surgery we went to visit a friend who had just given birth to her son in the same hospital.
The "severity" of it all has faded into the past. It's only when I look at the pictures that I remember the strain of being alert all the time, of sleeping next to a bleeping, beeping, peeping machine. Of breathing the rarified air of the hospital. Of feeling lost in time and encapsulated, like the days lasted forever. Of a knot of tension in my stomach when he went under. I also remember feeling grateful for friends coming to visit, feeling secure that things were going all right at home, knowing that people were praying for us.
It was a strange time. I hope it doesn't need repeating.

Hospital

Called the hospital this morning, because Tristans arm still hurt. Then we had to go to the hospital, because they wanted to check it out. And this time they did find a little fracture. So he's got his arm in a splint with a bright green bandage around it. He doesn't mind at all. And aside from the fact that we had to spend 3 HOURS in the waiting room (which was located in the basement, with no fresh air) I don't mind either. Too bad we pumped him full of his clotting factor though. Could have saved our medical insurance quite a number of euros by not having to do that!
We've had plenty of hospital experience with Tristan. 4 operations will do the trick! And again I was affirmed in my feeling that as a mom, in a hospital, you have to keep an eagle eye on things. Keep the ears and the eyes open, because a lot of hassle can be prevented that way. Mommies really do know best in a lot of situations!! I'm often grateful for my love of reading "Where there is no doctor" as a kid, and for the fact that I worked in a hospital for a while.
It was weird to be back in that hospital because I worked there for a number of years as a secretary on the radiology department. I even saw one of the doctors I used to work for and I saw a work schedule hanging up which looked exactly the same as when I used to work there. Funny to see how things stay the same when you've moved on so far as a person!

Flying Leap

Tristan took a flying leap off the trampoline on to the ground today, resulting in a badly sprained arm which with him means a pretty bad bleed. So the afternoon was focussed on injecting him, going to the doctor, then going to the hospital for x-rays, and then back home and injecting him again. He's now moaning in pain, so I'm not sure how much sleep we will get tonight! Poor guy thought he'd follow the example his friend set. I hope he's not cured of the trampoline for good as it's a great thing as long as you kind of behave yourself. But for now it means no soccer and a lot of extra injections to get the bleed controlled.
So I'm off to get him to bed and as comfortable as possible. And then off to bed myself as well. I find incidents like this very draining on my energy levels.


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currently reading Cradle and All by James Patterson

Injection

Here's me giving Tristan his injection. He gets an intravenous shot of clotting factor every other day, or at least three times a week. Herman and I both took an "injection course" to learn how to do this. You'd think that injecting him three times a week would make us really aware of his illness (hemofilia) but actually the opposite is true. I tend to forget I need to inject him even though we've been doing it for about 7 years! Of course, that may just be a sign of repression on my part.....
We handle his illnesses with a certain casualness though, that some people may find a bit frightening sometimes. Tristan plays soccer, goes swimming, stays at home alone, and plays outside without us really knowing where he's at. The only concession that we did a while ago was to get him an SOS bracelet, so if something dramatically bad happens at least people will know what number to call. For the rest we treat him like any other child. Thank goodness he does well with our sometimes lackadaisical parenting!

On the sofa

Marinda was feeling sick again today and called me at work and asked me to come home earlier. I couldn't manage (luckily Herman was home earlier than I was), but to compensate a little I spent a lot of the evening sitting next to her on the couch huddled under a blanket. I'm cold all the time, should probably turn up the heating, but feel guilty about it because it's 20 degrees inside according to the thermometer. So instead I suffer in silence, or cuddle up to my feverish daughter :-)
Tristan joined us after he took a shower and we sat together and ate popcorn and watched Hollands Next Top Model (yes, unfortunately, that plague has also hit us here!).
I'm hoping Marinda will feel better tomorrow though. She's so big she doesn't need us to stay home every time she's not feeling well, but I feel really bad leaving her home alone if she's really sick. It's touching to see how she kind of loses her sense of independence and really needs a mommy around. She was so independent, even as a little child, that it's fun to catch up on some mothering every now and again.
Tristan on the other hand, does not like to be alone at all and is very bothered if we leave him at home. The weird thing is that he is "sicker" than Marinda with his hemofilia and alopecia but is never really sick. And Marinda, who has no genetic disorders, is often home with migraines and that kind of stuff. And now it seems like her glandular fever is acting up again.
Oh well, we will cope, like we always do! And try to make the best of it as well by grabbing the good moments when we can.

Alopecia

Something that I've been having a hard time with lately has been Tristans alopecia. To put it bluntly, my little boy is going bald. Writing that down makes it sink in even more. He's gotten some bad genes from his parents unfortunately. I have given him hemofilia, which means his blood doesn't clot well, and Herman has passed on the alopecia that his dad has. The weird thing is that hemofilia is a much more serious illness. The alopecia only affects his hair growth. But it's just so darn VISIBLE! Which, in some ways, makes it more of a handicap that hemofilia is. This summer has been hard. The bald patches are growing and are becoming more and more difficult to cover up. He has a hard time trying to cope. It's hard to see my son suffer and have nothing at all that I can say or do to console him. He's a wonderful kid, and I'm so glad he's able to verbalize what's going on in his head, but regularly I wish I could grab a hold of God and force him to do some major healing quickly.