Coping with the stress of a childhood illness

Childhood illness can be difficult on the whole family. Shannon Kaiser, a blogger and mother of two chronically ill children, shares how she and her husband deal with the stress created by their children’s medical conditions.

If you drove by my house while the kids were getting ready for school this morning, it would’ve looked like a scene from an old TV show. Lunches were handed out, good-bye hugs given, and in a blur three of my kids are out the door, laughing and running towards the big yellow school bus at the end of the street.

Seems picture perfect, doesn’t it?

What you won’t see is a mother who cries after the door is closed. A mom who’s tired and scared but doesn’t have time to dwell on it because she’s needed elsewhere— to prepare saline and heparin flushes and clean feeding tubes, or start making arrangements for her son’s brain surgery.

You also won’t see a dad who’s worked three double shifts in a row to stay ahead of medical bills. You won’t see him on his one day off, too tired to be the father or husband he really wants to be.

“For families like ours, if you’re not overwhelmed every now and again, you’re not fully grasping the reality of the situation.”

On some days, this is the reality for my family, and we’re not alone. My husband and I are like thousands of others parents of chronically ill children, struggling to not only take care of their kids, but themselves as well.

In 2003 our son Sean was born in with Chiari Malformation, which means the bottom part of his cerebellum sticks through the base of his skull into his spinal canal. It can be extremely painful. He’s undergone one surgery already, but it didn’t do enough to alleviate the pressure on his skull, so at the young age of 7 he’s getting ready for a second brain surgery. It’s scary, but we know that his neurosurgeon, Dr. Benjamin Warf, is the best and will do everything in his power to help him.

Sean and Brigette at Children's

In addition to Sean’s needs, our 4-year-old daughter Brigitte was born with Noonan syndrome, a condition associated with congenital heart disease and short stature that affects about one in every 1,000 births. Brigitte’s case is more severe than most and treatment is hard on her. She’s currently fed intravenously and receives treatment for a laundry list of other symptoms. We see roughly 14 specialists at Children’s Hospital Boston, but her favorite is Dr. Daniel Kamin, of Children’s Gastroenterology Department. We’re at the hospital a lot and it’s not unusual to hear Brigitte calling “Kamin come here!” as we walk down the halls. She beams when she sees him, and he has brought such a great source of comfort to our family with his devotion to her.

While we’re thankful for the amazing care our kids receive, it’s still a lot to deal with. People often ask, “How do you do it?”  Honestly, I don’t know how to answer. There are days that I don’t want to do it anymore, when I just want to crawl under the covers and hide. But then I look into our children’s eyes and remember shutting down isn’t an option. I have to find ways to cope.

Sean and family at Children's. Sean's mom, Shannon Kaiser is to the left.

One thing that has helped me is writing. But when I jumped into the world of blogs, I noticed many of my fellow bloggers writing about parenting sick kids seemed focused on how well everyone is doing. I admire their strength but sometimes wonder if they’re really as together as they appear. When I write, I strive to be honest. I don’t want pity from my readers, but understanding. The parents of children with chronic illnesses aren’t begging for sympathies, but that doesn’t mean they’re super heroes all the time. Sometimes we need to vent, cry, or both. When we do it gives us we a moment to recharge our batteries. For families like ours, if you’re not overwhelmed every now and again, you’re not fully grasping the reality of the situation.

I think it’s important for moms and dads of sick kids to embrace some of that fear and uncertainty. It’s empowering. It drives us to do things most people can never imagine having to do. It helps us help our kids.

That’s not to say it makes things easy. The fear and strain caused by our kids’ medical conditions has made our lives a struggle, but anything worth having is worth fighting for. With that in mind we continue to fight; for our kids’ heath, for our marriage and for a semblance of a ‘normal’ life. We find those coping strategies.

For my part I’ll keep writing, my husband will put in extra hours at the job and my children will learn that life isn’t always fair, but it is worth fighting for. It will make them more compassionate to other people’s needs and we’ll all be stronger for it. And thanks to great doctors like Benjamin Warf and Daniel Kamin, we get to strengthen as a family, which makes all the fighting seem worth while.

11 thoughts on “Coping with the stress of a childhood illness

  1. Shannon is an amazing mom and we are honored to know her and her family even if it is under tough circumstances. Thank you for sharing her story that so many of us can identify with. And she is so right… Dr. Kamin is incredible!

  2. Shannon, thanks for sharing. And for saying what my husband and I are thinking. We have a child with CP, and she is a blessing, but, many days are hard. I agree that I don’t want sympathy, but I would like some understanding. Thankfully, I have that from family and friends. ANd the folks at Children’s are WONDERFUL!

  3. Shannon I think you are amazing and your family. I also think anyone who has the nerve to take care of a child that is chronically sick is also amazing. I understand it is difficult and can be time consuming but what can you do when you’re needed most of the time? My nephew Waylon, he is 12 and a half, and he has CP. We live in Mercer County, Ohio; sometimes it is a struggle for my mom because my sister isn’t around to help my mom out, and day to day my mom does it all by herself. Waylon’s condition isn’t that bad yet, he can walk but slowly he is getting worse. So, I try to help out any way I can. So, Shannon I really admire you and all your and your husband’s courage to keep going on. I also admire anyone else who has chronically ill children and they all keep going on. I think of this: Even if you have a small amount of hope, any hope is better than none to help get you through whatever. —BIG hugs to you Shannon and to anyone else in her shoes.

  4. My grandson has Micro Villus Inclusion Disease and I don’t know how they do it. The see Dr. Puder at Boston Children’s Hospital, and that place is fantastic. Dr. Puder is one of the best doctors I have ever known. I wish you luck with the kids, and prayers that things go well as they go through life.

  5. my daughter was born with a rare syndrome and has been treated at childrens since birth my son has asevere mental illness. i can’t say i know what you are going through cauxe i don’t but i know the stressors that go with having sickly children. i think you are amazing to do the job you are doing. and your husband as well. i will pray for you and your family may god wrap his arms arond your whole family and ring a miracle of good things. god bless you all

  6. God Bless you all having a child with any condition is overwhelming and physically emotionally and mentally stressfull. my granddaughter was born with resp failure and spent 8 mths in Childrens and almost a yr in Fransicans hosp in Brighten we relocated from N H because of the awesome Drs in this area and i dont know what we would have done if we hadnt been sent here for her med needs we are very fortunate to have the Drs from this area on our side.Im not saying that the Drs in N H dont know what theyre doing but thank God for Childrens hosp they saved her life more than one time.God Bless all of you. Nevaehs grammy

  7. There is no pity when I think of what you and your family are going through only admiration, if everyone could be the parent you are the world would be a much better place. My prayers are with you and your family

  8. As having only one child with a life threatening illness my love and tons of hugs go out to you and your family!!! My son has muscular dystrophy and he has four older siblings… So all together I have five beautiful children… I yearn for understanding as well, I wish my family was there for me more that my mom could come to doctor’s appointments just show that she understands, but I know that will not happen… Yet, I am thankful for my sister and my dad who do try to help when they can. But I agree with you Shannon, I love the support group but they seem to ignore the real tough issues and that is trying to keep your sanity plus hold on tight to remaining in a ten year marriage which is getting harder to keep together on some days … Yet, through it all my husband and I try our best to give our son Buddha Bear Manny the love he needs as well as our older four children care, compassion and hope and some laughing mixed in as well. This is one of the toughest journeys I have been on I’m hoping to make it through this yellow brick road!

  9. I remember this all too well! Back when I was raising a child with congenital heart disease, it was so isolating- no computer email or blogs then and no “caring bridge” either. Just old fashioned phone calls, and visits and snail mail to keep folks informed. We used people chain callers during emergent times. As far as day to day life, we awoke to a set of meds to be administered before going to school and O2 tank refresher at night in front of TV and later on in the years feeding tubes to hook up for sleep. Otherwise life appeared and was fairly normal, what ever that means. Our reality was always an in an out of hospital, coping with fear and uncertainty while “acting normal” and giving our daughter the best possible life she and we could have. I do think we succeeded best we could- given humans are prone to err and flaw and we are not perfect and we can not always control what happens. Parents want to protect their children and”make it all go away” when there is a “boo boo”. But big “boo boos” do not go away sometimes and can get bigger and more challenging. Staying present and loving and living with gratitude for what good moments and days are and mustering up the courage needed during the dark days are the recipe for coping, I believe. Gathering a force of support among family and friends and not being afraid to ask for help is important. We are a community and others do want to help. They just don’t understand how difficult and overwhelming it can be unless you tell them and ask. How could they know! We did not always reach out for help and struggled on our own for many years. In our daughter’s last year of life, things got so out of hand and we allowed others in and Wow, a community came together for us and it was amazing. She was ushered into afterlife surrounded by love and support and so were we.
    I think back to how I could have maybe asked more for help in those many years. So don’t be afraid to show your vulnerability and not just your strength. Give yourselves as many play dates as you can and take breaks as couples together. Keep the joy flowing as much as you can. Good luck to you all. Love and blessings. Susan

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