I have been soul searching and trying to figure out why this probably tracheostomy need is eating at me. After talking to a couple of friends and reading thoughts from other moms who have gone through this, I know what it is.
Denial is a beautiful thing. I remember at the Texas Parent 2 Parent conference’s grief session, the woman running the session commented how being able to be in denial at times just makes everything else survivable.
Right now, Hannah is a medical-equipment-free special needs child. With the exception of her braces, which honestly I consider such a benign piece of equipment, no one looking at her would know that she is affected by this horrible fatal disease. She just looks like any other beautiful baby girl you would see on the street. No one really sees a special needs child.
Even more so, *I* get to feel like she is any other beautiful baby girl on the street. The way she acts, smiles, rolls over to find me, etc., she is just like any other child. I get to live in denial for many hours a day that anything is wrong with her or very minor things that are wrong. For those many hours, I don’t feel like I have a child who may only be with me a few more months to a few years.
However, having to put in a tracheostomy will kill my freedom of being able to be in denial about what is happening to her. It will be a constant visual reminder every moment of every day that she is losing this battle with Gaucher’s disease, that this disease is affecting her more and more.
As long as she is without the trach, I feel that there is still the possibility that something may come up to save her life, that I will find something or someone to help her, something to stop or even reverse the damange this disease has caused.
It is almost as if this trach is the “fine line” between hope and loss. It is also as if this trach is the “reality check” that we have to face with sharing with Abigail and Ethan about how serious Hannah’s condition is because they don’t know of any other child with a trach.
I know that I will get used to the physical act of taking care of her with the trach, I know that. I know that the trach will improve her quality of life since she is still learning new skills and still is an active and coherent child.
I need to be able to continue to have my many hours a day of denial right now. I’m not stupid, I know what the future will hold, which is why I need as much “denial time” now to really allow the freedom of having a somewhat normal family for Ethan and Abby and even ourselves.
Because once we are no longer able to live in denial about this, I am afraid of falling apart and losing it. I mean, seriously losing it. I just can’t afford to do that.
So, that is what it is. I so don’t want to be faced with having to do this. I’m so scared about the emotional fallout from myself, my husband, my kids, and our families and friends once we have to cross that line.
Hugs to you, Carrie. I wish I had the words, but I just don’t. I am thinking about you and praying for you, your family, and most especially Hannah.
You are so self aware, so strong in the face of an uphill battle. I understand that you are afraid to fall apart, but something tells me you won’t, that you’ll weather this storm too for the sake of your children. Hang in there.
I agree about wishing I had the words. All I can offer is to listen and pray.
well put! and completely understandable. But as you have done with everything else – every other challenge – deal with it WHEN it is needed. Even if a week from now, a month from now, longer…enjoy her now as you do and let this go. There is nothing you can do to stop it if it is needed at some point. And I bet, when it does, you will be your usual strong self (after falling apart which is normal) and pretty soon it will be the norm.
xoxoxo
Found you through 5MFSN.
You and your precious little girl are in my prayers.
You are the strongest woman I know. You will never completely lose it when you are most needed. I have no fear of that. You will always be there when Hannah, Ethan and Abby need you. It’s ok… even healthy, to let it out in spurts though. You can’t keep it all bottled up. Sometimes denial is a great coping mechanism, but you’re too much of a realist to hang out there too long.
I just wish that you and Robert weren’t facing these challenges, but I’m so thankful that God gave Hannah to you. He handpicked parents who would do the very best for that beautiful little girl.
Love you all so much!
((((HUGS))))) You have EVERY right to WANT and NEED the hours of denial that you entitle yourself to every day…When my son got his first chair, I remember thinking the SAME thing every time we took it out. “Now, there is NO denying that he is special needs.” 11 years later, it is just WHO he is and neither me nor his siblings think twice about it…. That attitude came very quickly to the siblings. They adjust quick!
You are a FABULOUS support for Hannah! Kudos to you. Keep giving yourself those denial moments. They are healthy…
Praying for you in Katy, TX…
As long as your precious daughter is alive, there is hope (trach or no trach).