Most of us tend to take things for granted in life. We now live very busy lives running around and never having enough time. Stress and anxiety are at all time highs. Many of us still live unfulfilled lives, constantly searching for a purpose or satisfaction and happiness. We tend to overlook many of the small things in life that we should take time to appreciate and even celebrate!
Félip’s disability and challenges have changed our lives completely. We often think back at the people we used to be before Félip was born and it’s crazy to think about how different we are now. Going through the events at the start of Félip’s seizures, accepting his disability and dealing with the current day to day has changed our perspective tremendously.
We’ve had to accept that Félip will never be able to walk, might never be able to sit or communicate with us, will never be potty trained and will most likely leave us long before we bite the dust. Of course we’re always hopeful and want to push him to do everything that he possibly can. But we also need to remain realistic and not set our expectations too steep. That is how we define acceptance.
We try to live a positive and ambitious life with Félip. We love him more than anything in this world and are up for any challenges his care may bring. We often get praise from Félip’s team of various doctors, nurses and specialists for our outlook on his life and our energy and positivity around his care. Unfortunately we can’t keep this up at all times. No one can. We get our bad moments/days. Times where the reality of our situation sets in and we focus on the negatives a little too much. Times where we break down. Times when we let sadness invade us as we think about Félip not being able to see the wonders of the world, not being able to sleep properly, constantly being rocked by seizures, feeling confused and not understanding what’s happening, living his whole life with what seems like very little awareness and maybe never understanding how much we truly love him.
All of that negativity is almost instantly dissipated when he adorably starts cooing or when he seems to be smiling. When you hold him tight in your arms as he’s falling asleep and you feel his warm breath against your neck. When he seems to be excited and is wiggling around like a little worm. When his eyes are actually opened and he’s alert enough that they look around and sometimes look directly at you, as if he could actually see you. You see, for us, for Félip, it’s the little things that count. We’re truly grateful of these happy moments in between seizures. These are the things we’ll remember him by.
We’re also always grateful that so far Félip doesn’t have other significant health issues. We’ve seen different families and children where they also have to deal with health concerns such as organ failures and other underlying issues that pose an even bigger risk to their lives.
To other families, we’d like to say: don’t take anything for granted. Your child is an amazing tribute to life itself. As they go through their development and acquire new skills you should be thankful and grateful for their achievements. You should truly appreciate the little moments, hearing your child’s laughter, having them recognize you and smile at you, their falls and mistakes, their communication, and hearing them say I love you. Our lives are often fast paced and we have so many reasons to be stressed out and anxious. Your child should be your escape from your busy day, you should be able to get lost in the blissfulness of their innocence. Don’t take the time you spend with them lightly. Don’t see their regular care and your routine as a chore. Embrace all the time you get to spend with them. At some point they’ll be all grown up and all you’ll have are the memories of those times you used to give them their bath, read them stories or play with them.
We know that when Félip leaves us, we’ll miss all of the time we spent with him. All of the things we used to do for him, no matter how unpleasant. All the sleepless nights, all the tube changes, all the hospital admissions, all of it. That’s why we try to live in the present and we try to appreciate even the most mundane and basic things we do for him and with him. We’re just grateful that he’s still here.
As always… Love. Laugh. Repeat.
