Disappointment and Loss of Expectation

Parenting Luke has come with a lot of difficult moments. Moments of letting go, moments of joy, and moments of disappointments. Experiencing the NICU has many disappointments, unmet expectations, loss, and as life progresses throughout that detour I find myself dealing with disappointment more often.

I am more proud of Luke than anything in my life.

The thing is, I can confidently say that in no way am I disappointed in Luke. On the contrary, I am extremely proud of him. More proud of him than anything in my life. He has shown me in so many ways how strong he is, he’s a fighter, how he loves so innocently, and I am so proud of his journey. Luke and my other two children are the light of my life and I am proud of each one in their own way.

After leaving the NICU my husband and I have dealt with disappointment in more ways than one. When we left the NICU we knew there were going to be setbacks, and as our journey progressed setbacks came in unexpected ways and they jumped out of nowhere. So in discussing how we’ve struggled with disappointment I want to give you a peek at the perspective of a special needs parent.

Reality felt out of place from the thoughts and expectations we had for Luke.

One of the first disappointments Adrian and I went through was learning that our child may have disabilities and setbacks throughout his entire life. This reality felt out of place from the thoughts and expectations we had for Luke. In learning this we had to let go of all of our expectations and that in itself is hard. The prayers I had about him and the life I envisioned for him would not come true. As much as I think I’m past this part and I’ve come to accept it the pain comes rushing back. That pain you instantly get when you see other kids the same age as Luke meeting their milestones. I find myself starting to compare Luke and that steals my joy and allows disappointment to set in. I guess the hardest part of all of this was the uncertainty that came with this new knowledge. But this disappointment came with hope. Hope that would allow Luke to have his own journey that is completely his. Luke may have limitations but there is so much more beauty that has come from his life. The one good thing about this type of disappointment is that it’s emotional and it comes from my own expectations which makes it more manageable.

There are parts of this journey in which the disappointment comes from the outside. From the people you have to depend on such as the medical field and specialists. Accepting your child’s disabilities is one thing and it's easy for us because we love them and we know them, their personalities, and their character. Every time we have to explain Luke’s journey to the doctors and specialists it brings us back to those painful moments, but every time I tell his story I find gems of how he is surpassing the limitations that were spoken over his life by doctors.

Luke is not defined by his limitations

Having Luke assessed whether it be for therapy, procedures, or surgeries is hard. Every six months Luke is assessed for his therapies and I have to hold back tears at the fact that he is still so far behind on his milestones. Part of advocating as a parent is helping people understand that Luke is not defined by his limitations and explaining that his progress can’t always be measured on paper. The specialist’s attitude and ability to empathize also play a part in my disappointment. When I was trying to order Luke’s wheelchair the nurse couldn’t understand how a child that was only one would need a wheelchair. Having to explain this and justify his medical necessity was hard and her attitude caused me to feel angry and frustrated with her. Luke has been denied for so many things and it’s also very disappointing every time we receive a letter denying him access to things that could improve his quality of life.

Another part of this journey that comes with disappointment is the loss of support. When we first came home from the NICU we felt so supported and surrounded by a lot of people. As time has passed people have slowly started to fade away and we now find ourselves with only a few strong relationships that we can truly rely on. This loss of support has been difficult. I’ve realized that it takes sacrifice to walk alongside our journey. At first, it was easy to support us because it was in your face and it was fresh. Luke was in the hospital and we were learning to navigate this new life so a lot of people were affected and touched by this. As time has passed this has faded. After bringing Luke home and settling into our daily life and learning to navigate our new normal people began to hear less of our struggle. So because of this their support also lessened. But no matter how graceful we make our new life look we will have that core support group that will keep us grounded. Learning to set boundaries is a huge part of reducing this type of disappointment. Being part of our family is exclusive and it’s okay if people are not willing to come along the journey.

In Experiencing disappointment a bigger problem begins to brew.

In Experiencing disappointment a bigger problem begins to brew, and that’s depression. I can go on with this subject for a while on another post. Within disappointment; anger, guilt, and resentment can build. These feelings are normal and they are more due to the loss of expectations rather than Luke. I have found that through coping skills, a strong support system, and faith, the disappointments that come with this journey are easier to manage. Disappointments don’t define our happiness or Luke’s progress, all they are is loss of expectations. Even though we grieve this process I can confidently say that I am proud of the life my family and I are living and I have a better perspective when it comes to our blessings. The therapists, the doctors, and family that do help us fight and pray for Luke are enough and I am content with that.

If you want to hear more on this subject make sure to tune into the podcast this Wednesday.