To the Families Facing the Mid-face Advancement (aka: halo, R.E.D.- rigid external device, Lefort III):
Time really does heal.
There seems to be a lot of my “cranio friends” whom I have recently learned are facing this dreaded surgery for their child. As a matter of fact, there are probably more of you that I am not even acquainted with yet as well. I know that feeling of dread all too well. You just want to dig your heals into the sand. My heart is heavy for you, for I too, have climbed those mountains. But, there is good news my friend….you will get through this!!!
It has been almost six years since my son Logan had his RED, or in other terms, worn the “halo.” I had only been on Facebook about a year, and was still uncomfortable with the whole social media thing for myself, much less posting pictures of my son. Logan was born in 2002, so I look back over 15 years of obstacles he has overcome, and perceive the ones he still faces in the future. I don’t know what I would have done without God being with me in the midst of my emotional mess, or the wonderful family and friends that He had given me. They were my life savers. Yet, there is still something to be said about connecting with someone who is going through the same struggles that you are. That is something I didn’t have, thus still feeling a sense of separation from the world. My advice here to you is to take advantage of the private social media group called Apert International. We are here for you and ready to listen and offer anything we can for you.
Our children going through these surgeries deserve ALL the love, support, hero capes, gold medals, ice cream cones, video games, soft animals, (the list goes on) that there are in the world!! They are true little warrior heroes. However, as parents we naturally shove our own fears and emotions down deep so that we can put on our stoic faces and become an Avenger for our child, simply for the fact that we are going to be swooping in to save the day, night, and all the minutes in between. We will sit in a stiff chair in the ICU, night after night so that the moment our child calls out to us, we are there for them and can jump up and rescue the need. Thirty-six hours will pass for us without ever getting a wink of sleep, but we do not complain, for we know that this is a drop in the bucket compared to what our child is enduring. These are no simple band aid fixes, but we get to be the ones doing our best in making everything better, whether it is six wagon rides throughout the wee hours of the night, or your husband running off from the hospital at eight o’clock at night to buy your child a pillow that is just right so that they can lay as comfortable as possible with this device attached to their head. At their request, we will push them in a wheelchair, doing laps around the pediatric floor just to leave the room, and even though their eyes are swollen and stitched shut, we can sit by the fish tank and listen to the calming bubbles. We read a book to him at three o’clock in the morning, even though your own eyes are barely working, but you pay no mind to that, because you know that reading this story is exactly what your child needs right now, for comfort and just to hear your voice.
We do these things because our love is so fierce for this beautiful child we have been blessed with that words cannot even describe the depths we will go to for them.
We may be Avengers by proxy, yet we are still human beings with human emotions. I harbored a lot of emotions during our son’s mid-face advancement., but I think a lot of us do sometimes. It’s just easier in that moment, but it left me feeling confused about all the emotions that I was experiencing, naturally being unsure of myself. I do wish that I had the social media closed groups option that we have now, I think that would have given me more peace of mind. Take advantage of that. But if I were to speak to the younger me, I would say, “it’s okay. You are human. You are not alone…..somewhere, somehow, someone is going through or has gone through the same thing as your family….you do have a tribe!”
So, for those of you who wonder if you should be feeling a certain way, I say to you:
- When you need to be angry, be angry. It’s really not fair that our children must go through this. Just don’t stay there. Let it out and throw bitterness to the wind. Vent to your trusted groups, friends and family.
- When you need to cry, cry my friend. Don’t hold it in. I cried many times just sitting in my bathtub when things were just too much.
- When you need to laugh, even though you may think, “how could I laugh at anything at a time like this,” it’s really OK. Laughter is good for the soul and helps the human spirit. Nothing like some good ol’ Looney Tunes cartoons, or your favorite comedy movie.
- If you need to seek counsel, do it. Don’t be stubborn like me.
- Find and seek out people who have either been there, done that, will be facing it in the future like you, or just a trusted loved one, friend, or pastor. Yes we have to stay strong for our children and our family. But there is only so much that a rubber band can stretch until it actually does finally break. We are here for you!
- If it tests your marriage, talk it over. Let all of your honest fears and frustrations be known. Marriage alone doesn’t need any more strain.
- When you “miss” the old face…..resist guilt. You fell in love with that beautiful face, it’s your child and the way that they were born, and they will literally transform right before your very eyes. You will get to fall in love all over again.
- You will embrace the new face. It will take time getting used to the change, for everyone, not because you don’t find the new face an utterly beautiful, wonderful, mesmerizing, less runny nose, easier to breathe, protective-of-the-eyes face, but because the face that you once knew and fell in love with is now a different face. So give yourself and everyone grace.
- Turning of the screws….it may actually be so much easier than you think, at least for us it was.
- If you fear the feeding tube, call the nurses. Peace of mind will save you some anxiety.
- When you are counting the days until the removal, something we did was marked off the days on the calendar which seemed to help us all. It can be a good visual that there is an end in sight as well as show you what you’ve already conquered.
- Last, but certainly not least, and in my opinion most important…..pray. Pray for it all. Pray for healing, wisdom, peace of mind, patience, strength and everything else. God will help you through it.
When it is all said and done, you will look back as a family, and see the mountains you all climbed.
God bless you all, and I am here for you! I am in your tribe!
“There may be pain in the night, but joy comes in the morning.” ~ Psalm 30:5