Photo credit: Kelly Gaines
The rare times I picture the grief I feel about Maya having cerebral palsy I envision it in a cocoon-like incubator with layers of gratitude and hope spun around it. These layers help me cope with her condition and cushion me from falling into the raw grief and sadness that hides further within. Although much healing has taken place, I still am aware of the grief inside me. It emerges in unexpected ways and at surprising times. Its protective layers occasionally become increasingly vulnerable, falling away, exposing the raw and painful core. Something as simple and festive as a birthday party, family gathering, travel, or even a vacation pushes us beyond the comfort of our established routines and circumstances and leaves me facing the harsh reality of Maya’s differences. I enter a space where I am forced to look again and again at how she doesn’t fit into the world. I scramble to gather my alternating cloaks of gratitude and hope but sometimes they begin to fall through my fingers. Raising a child with special needs requires incredible flexibility, creativity and forethought. Over time these qualities have become second nature to me. But within each of us is a threshold, a place where our resilience is challenged.
Every inaccessible bathroom, puzzled stare, required explanation, alternate route, pulls and tugs at my emotional cloak a little each time. Occasionally these experiences gain a stronger hold, stripping my grief of its protective layers. Strangely enough I realized I was feeling quite down after returning from a week of travel. Certainly the trip had its moments and days of fun and laughter. But there was another side to the experience as well, and that was having to constantly navigate the unexpected, inconvenient, and physically challenging aspects of the trip. This isn’t unfamiliar territory to us when we travel, but it felt more intense this time. Perhaps it was the number of places we tried to visit, the time commitments we had, the unusual number of problems that arose, or our stress of observing Maya for seizures. Whatever it was my mental and physical tiredness gave way to grief last night. As I walked into my room to get ready for bed, Maya’s dad asked me what was wrong. I could barely speak. The only expressions that came easily were tears.
After a few moments I told him how upsetting our recent travel experience was for me. Despite the many wonderful events, including my brother-in-law’s wedding and finding several accessible places and incredibly kind and supportive people, this trip still starkly highlighted Maya’s challenges and discomfort. I didn’t realize the degree to which I am unconsciously affected when I leave the safety and comfort of the routine we have at home. Thinking back I realize this kind of grief seems to emerge every time we go away. I finally had some insight into it this time and perhaps that was because my feelings were more pronounced.
We love adventure, travel, and new experiences. Maya loves them too. I am always committed to helping her experience as much as possible as long as she is up for trying it. It brings me great joy. I just didn’t realize that along with the joy, exhilaration, and gratitude that accompanies our new experiences, occasionally my grief becomes exposed as well.
19 comments
Kate says:
Jul 3, 2014
So brave of you to share your deepest feelings. Thank you.
Linda says:
Jul 3, 2014
Thank you Michelle for speaking so candidly and from the heart. You put into words what many of us share yet don’t allow ourselves the courage to take stock of or express -never mind in open forum. You are certainly not alone. Thank you for validating what is common ground for many of us.
Crystal says:
Jul 3, 2014
Michelle, this is Crystal from MCCCC. I KNOW that you and your husband are two of the strongest people I know. Miss “L” are blessed to have you as parents. Love Crystal.
Rose says:
Jul 3, 2014
Thank you for sharing! Your daughter is blessed with such a strong mother. It’s very brave of you to share private thoughts. Know you are not alone. I often find myself grieving about my son’s challenges (he has CP too). Then I start to feel guilty for having those feelings. But at any moment there is always something to be thankful for.
Melanie Brittingham says:
Jul 3, 2014
I just read this and am now bawling crying. Im planning to take my 19 month old son with CP and my 3.5 yr old NT son to the beach next week with my best friend from college and her husband and 2 NT kids ages 2 and 6. I have been super excited about the fun I know we will have, but ive also been dreading the trip and feeling more and more anxiety-ridden about it as the dates get closer. Ive never taken my son with CP to the beach before. In fact, ive never taken him more than 2 hours away from home since he was born…and when I did that I left my NT son at home. Im worried that this upcoming trip is just too adventurous for us. Will Austin hate the beach? Will my 3yr old Robert act too wild and give me a heart attack trying to keep up with him while phshing my CP baby in a wheelchair down the beach? Will Austin cry the whole time and annoy my best friend and her family? Will I be a vb le to fit all of his slecial needs equipment in our car?
teejay says:
Jul 3, 2014
Thank you for sharing your private experience about May a,also have a 5 yr old daughter living with CP. She hear and understand everything you tell her but still not taking and walking.pls want to know how old May a was when talking.but speak selective words
Darrell pone says:
Jul 4, 2014
Hi
Thanks. My advice to live in the present moment and focus on her loving spirit. I know she has the best professionals to guide her. I know in NYC they have adaptive toys for developmentally delayed children.
cp daily living says:
Jul 4, 2014
I am a bit confused by your comments her Dr. Pone. I am curious if perhaps it was meant to go with a different post? If it does accompany this one I must emphasize that I believe it’s critical for parents to understand that it is ok and natural to feel sad, angry, frustrated etc. from time to time. We are all human. The majority of my posts (especially my daily posts on Facebook) are all about focusing on what does work for your child, tossing aside comparisons, and honing in on their unique selves. I am quite good at that. Your comment feels a bit like you are saying that it’s not ok to let the sadness out. This post came from a place of deep vulnerability and a desire to allow parents who bury their grief, to know they aren’t alone, rather than seeking input about how to make it go away.
Darrell pone says:
Jul 4, 2014
We all have a right to our opinion and everyone deals w life the best they can.
I was only trying to help.
Obviously I have never met the parent nor the child My childhood was in the 1960’s. I have never met the parent nor child.
But thank you for posting.
cp daily living says:
Jul 5, 2014
Hello teejay. Speech delays or problems speaking are not uncommon with cerebral palsy. Does she have a speech therapist and/or access to an alternative communication device? Since the brain is affected differently by the initial injury causing the cerebral palsy, it’s hard to gather information from one person and apply it to another. In Maya’s case, her speech was an area minimally affected by her initial injury. However, I can offer some hope by telling you that I have spoken with other parents whose children spoke later, and two of them spoke their first words during their favorite activities. Much strength and love to you and your daughter! -Michele
cp daily living says:
Jul 5, 2014
Thank you Rose. You are very kind and thank you for letting me know I am not alone. I think many people often wonder and perhaps worry about whether they are strange or even wrong for having the feelings they do. -Michele
cp daily living says:
Jul 5, 2014
Awe, Crystal thank you for beautiful note. You are very kind. -Michele
cp daily living says:
Jul 5, 2014
Thank you Linda for being supportive and offering me validation in what I am feeling.
cp daily living says:
Jul 5, 2014
Thank you Kate. -Michele
cp daily living says:
Jul 5, 2014
Dear Melanie,
Oh dear I am so sorry this brought forth more grief and pain for you Melanie. Don’t despair! I think you probably have imagined all of the possibilities of what could be upsetting about this trip and I imagine this leaves you more than emotionally prepared for what may unfold and perhaps surprised for how it may go well. Being caught off guard tends to be what makes it more difficult for me to get emotionally back on track. Let me offer you a little encouragement. Beach trips are some of the most enjoyable times we have shared with Maya. The sand is very forgiving and Maya finds freedom in it. Not to mention how I tend to relax listening to the waves. Sure we see other children running and playing and that is something we have had to process and accept just like we have had to do with other circumstances. The first time we took Maya to the beach she was a little scared of the water, but over time it has been well worth it. The beach has become one of her favorite places to visit! I obviously don’t know how your son who has CP will respond, but I think it’s well worth giving it a try. I have learned to adopt an attitude of little expectations when traveling or trying something new with Maya. Sometimes my plans for a trip or activity for her ends up in a completely different direction. Rather than enjoying the activity we intended for her to enjoy, she ends up liking something like the hotel bathtub or the pancakes at a restaurant. It’s actually quite funny at times. I think if you make the commitment to just see how it goes and do the best you can, you may open up a whole new space inside and outside of yourself for enjoying new parts of life with your family. Perhaps have your friend help you organize some kind of strategy for helping you navigate the dynamics of keeping up with your 3-year old so you can focus on your younger child (or vise versa). I have no idea if any of this will be helpful and perhaps you just needed a good cry and a venting space. Whatever the case may be I am rooting for you and hoping you find some joy and laughter in your trip. And if you have a few tears that’s ok too. As for fitting all of the special needs stuff in the car…that’s always a challenge. It takes time to find strategies for these things and you will learn yours over time.
Sending you a big hug…
Michele
Barbara Gibbs says:
Jul 5, 2014
You are a beautiful wonderful Mother that has a beautiful wonderful daughter.I pray daily for you and your family. We serve a God that’s more than enough. Prayers, Barbara
Anonymous says:
Jul 6, 2014
I think you are a good Mom and Dad. I do not know your exact problem. My daughter is 32 years old. She could not do much, had slurred speech,
and knew what was going on. I don’t know your daughter, but do not give up, Get a very good PT (not from school). Do exercises everyday. We moved
from NY to Pa 10 years ago. She was bending over when we moved (she was 21). The PT taught me exercises to do. She is now standing. She is out of a wheelchair 12 years. The only thing NY did for me was give me a good walker. She volunteers at the Library (8 years). I worked and I worked, and was told to put her into a home and forget her. I was so upset, but I knew there was something there. Your daughter has potential too. Look for it. Look into her eyes and find it. People do not necessarily care, because they do not know.
Do not give up on your daughter. If you. want to talk more, I’ll give you my e-mail. bdfarrell@aol.com Refuse to give up. She will make it
if you refuse to give up and keep fighting.
Mary
Ellen carvello says:
Dec 21, 2014
My sister ! My niece … The loves in my life !!
I wish I could make your tears go away !
Darrell Pone says:
Dec 23, 2014
I wish you many blessings. As a doctor with CP I share my story with others.
God Bless.