Family and Fixator First

Something has been on my mind from time to time since Nicholas had his fixator put on back in March. I have felt very often that people who have not had a child in a fixator have no clue what this has been like for Nicholas and for us as a family. Just like I have no clue what it is like to have a child with a life threatening disease or many many other things families have to go through that we have not. And while things have gone so very well and I feel all the hard times were well worth it, there were hard times. There were hard decisions to make and there were times I know we disappointed others in what we were willing and unwilling to do with Nicholas in the fixator. There was stress!!!

There were often times I declined invitations because I knew there would be activities involved that Nicholas could not do or things I did not want him to do. For example if I avoided amusement parks so Nicholas would not be sad about the fact that he could not go on rides. I would obviously rather disappoint someone else than make my son feel bad about having the fixator. I also found that we really really needed to be home in the evening and have plenty of time to do pin care and leg wash and exercises. It was hard sometimes to keep Charlotte and Christopher occupied in the beginning when it took 2 of us to do all of it. When Nicholas was over tired everything was so much harder. We had to have a tight routine. One of us would do baths, while the other did pin care or cleaned up after dinner. Evenings were the craziest time of day and I know we are not the only family that feels that way. But there was a lot to squeeze in. Having people over for dinner and such really was too much to deal with and not worth the stress sometimes. So we didn’t do it and we really didn’t mind most of the time. Oh and we had a huge kitchen renovation that stretched from before the fixator was put on till… well it’s still going on.

Also there are things that were too hard for me to do alone with the 3 kids. Christopher is still a toddler and requires constant supervision on the play ground and else where. Nicholas required constant supervision while on the playground in his fixator. There were times I did take them all by myself but it was not easy! Nothing that involved leaving the house with the 3 of them by myself was easy. So there were plenty of things I opted out of and maybe we did spend too much time at home but I figured it was better for them to be at home with a calm mommy than out with an anxiety ridden one. Luckily Steven worked from home most of the time so we could do the ‘divide and conquer’ thing and that worked pretty well.

When Steven was traveling there were some tricky moments. I had to really focus on being calm and ordering take out. I had to pay attention to the things that really had to be done and let others go. Letting go is important in my opinion. You have to let go of your idea of the perfect house and perfect anything and just do what matters and is necessary. Ok so my house is still a mess but I will get to it. The mess could wait, pin care could not. Building a Lego house with my kids last night could not, participating in a web chat and connecting with other parents could not, relaxing with my husband at night when finally all the kids were in bed could not. So I have a lot to catch up on. We have friends and family who we really did not get to see much that we would like to. We have places we want to go once the cast is off. Nicholas I am sure will be at the amusement park the first day it opens to ride the sloosh or whatever that water ride is called that he heard other kids talk about.

I hate when I read about people saying lengthening is bad because kids who have it loose their childhood. Not getting to ride the sloosh for one or two summers does not constitute a lost childhood. Even spending a lot of time at home was not a bad thing in his mind. He just remembers the the fun stuff he did. He does not even know about most of the things we didn’t do.

Essentially we have spent the last seven months in our own little world. Nicholas handled everything very well ( he really is such an amazing boy) and with no complications (except pin site infections which are expected). I don’t know how he would have felt if we were constantly running around and  taking him to places where he could not participate. Or if we had put ourselves in stressful situations for us, that would certainly have impacted him. Every decision we made over the last 7 months had to have the fixator in mind. Thinking ahead I am sure saved us trouble and stress. We put our family first and that is a lesson I will never forget. I will not say yes to anything to please someone else if it is not what is best for any one of my kids. These 5 (soon to be 6) people in these 4 walls are what matters most. Did we miss out on things? Sure we did. But when I imagine Nicholas, for the rest of his life doing what ever he wants on his own two feet, I am never sorry.