by Jill Haas
My child is my whole world. I have heard many parents say this about their children. And in many instances, it is a sentiment that tells of love and connection. In my life, my daughter is my world, in love and sentiment, but also in the full reality of the phrase.
Sylvie is a beautiful and charming three-year-old girl. Her smile is contagious; her laugher comes out from her in full honesty and truth. She lives in the moment and does not judge. The global limits imposed on her are numerous. She has not yet been able to hold her head up, sit, stand, nada. She can communicate on an emotional level, but not in any way as to tell me where she hurts or if she wants to play in the swing or go for a walk. She has vision impairment, chronic GI issues and intractable seizures. She is fed by a G-tube. She has seizures every day. She is medically fragile.
The 24/7 Job
I am her mom and full time caregiver. This is a 24/7 job that requires immense patience, intelligence, organization, experience, training, stamina, and faith. My child literally IS MY WHOLE WORLD.
Let me explain.
My social circle: made up of her therapists, her on-call providers, her home health agency, the operator who takes pages at the hospice line, the pharmacists at Rite-Aid, the nurses at the children’s hospital, even her neurologist (I often brag that I once had a neurologist hug me…they are not “huggie” people).
My job: her caregiver. I also mean that literally. In my state, they pay me a stipend to be her caregiver, instead of hiring a nurse to care for her while I work out of the home. It is a great thing. It saves the state money (I work for cheap), it allows my daughter to get the very best of care, and it keeps our family from sliding into debt.
My hobbies now revolve around my daughter. I used to be an avid hiker, cyclist, and could host an amazing backyard party. I have tried to organize a party, only to have to cancel because we are suddenly in the hospital for a week. And it is obvious why I don’t get out hiking and biking (no baby carrier in the world would support my floppy little one…I have tried them all).
So as you see, she IS my whole life. I spend three hours a week at the gym and get a four-hour date with my husband each week if we are lucky. Other than that, my life revolves around my daughter and her illness.
Now is the part where we get to how this all relates to pressure. When your entire life revolves around the fragile life of your child, the pressure is constant. I am responsible for her every need, and she can’t tell me what she needs, so I have to guess. Some things are routine, feeding at 10, 3, 7 and 10, meds at 10, 5 and 10, change when she is wet. But when she gets sick, all bets are off. No routine, meds change, all doctors have different opinions and all look at me and say, “what do you think we should do next?” All the while, my daughter is screaming, seizing, and horribly constipated or blowing out with diarrhea.
Everyone looks at mom, especially me. I look to myself and say, “well if you think you are such a great mom why can’t you make it better?” One of the leading child neurologists in the country looks at her and scratches his head, yet I seem to think I can figure this out with mommy intuition? It is a constant battle in my head all day every day. A never-ending loop: well she is constipated again and screaming, its time to feed her, should I feed her, maybe that will make it worse, but what if she is hungry, maybe she needs a pain med, but the pain med will slow down her gut and make it worse, but if she is in pain she is so tight and maybe that is keeping her from relaxing enough to poop, and if I don’t feed her the gut will slow down too, but if she is full of poop she might vomit, oh no what if she vomits poop, I have heard of that, better research it, but before that do I feed her or not?
All the while the pressure builds. She is relying on me to know what she needs. To know when to go to the hospital, and when to try and comfort her at home. To know when she cries, is it because she needs food or needs her belly to rest. To know when to say its time to the crazy treatments and just manage her pain.
The pressure is immense. I think that this is what a lot of new moms feel when caring for an infant who cannot communicate its needs. It is all up to you and your mommy intuition to know what to do, how to do it and when to do it. Only, the newborn time frame is limited. Kids grow up and learn to tell you what is wrong and eventually how to take care of themselves. They learn to feed themselves, dress themselves, sleep all night, tell you they love you. My daughter and I will never know that reality. She is my “newborn” always. I do not love her any less for this; in fact I might love her more.
She and I are one, my life is her life. Because it has to be.
I could send her to a care facility or work my ass off to afford round-the-clock care, but she deserves her mom, and I deserve my daughter, whatever the reality of that life is. But the pressure…it wears on you. It makes you not as nice to others as you want to be, and not as available to your friends. It makes you ill, it makes your head hurt. It makes your heart hurt most of all.
Relieving the Pressure
I know there are moms out there like me, feeling this pressure of the little life that could. The moms who are really being honest when they say, “my child is my whole world.” I have not found a total solution for the pressure, but I have found a few things that have made a dent.
- Take care of yourself when you can, and when you can’t, figure out a plan to get a little more help so that you can. My exercise time is in my plan book just like a doctor’s appointment or therapy session. If I am not well and strong, I can’t take care of my girl, and that is not OK with me.
- When faced with a tough decision, try to always think of it from the perspective of the whole family. The quality of life of every family member needs to be considered, including YOU.
- Pay attention to your mental health and stress level. When my daughter is overwhelmed, agitated and irritated, we give her Clonazepam, When I am about to have a panic attack from all the pressure, I take one too…prescribed by my doctor. Talk to your doctor or better yet a therapist about the pressure you feel and see if they can recommend a way to help.
- Remember that it is not your job to “cure” your child. You are there to love, comfort, and support healing, but you are not a shaman, you are a mother.
- Accept it. This is my life, and once I accepted that I began to see the amazing lessons I am learning and the opportunities I have to grow and evolve.
There is a caveat to this list. The caveat is that sometimes you just have to bow down to the pressure and let it overtake you. We all deserve to lose it sometimes. Then you just start again and try to make your sanity last a bit longer next time.
Being me, in my life, with my daughter is a one-of-a-kind experience. The stress and pressure that comes along with it is something that needs to be managed, just like any other health condition. Just as I set non-negotiables for my daughter’s quality of life, I must set them for my own. Currently, I just began a course on Mindfulness Based Stress Reduction. After the class is done I’ll let you know how it has helped.
And oh yeah…remember earlier when I said I have not found a solution for the pressure, I lied. The solution lies in the moment when my daughter smiles. Oh how I love her.