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Mother caring for chronically ill child

Mothering a Child With a Chronic Illness

May 30, 2024

Mother caring for chronically ill child

A mother’s heart is like a diamond; it is tough and full light. It sparkles, and is a symbol of ever-lasting love.

I am a mother of a chronically ill child.  Our daughter, Rosalina, was born with an extremely rare genetic metabolic disease called Maple Syrup Urine Disease. A disease that, if left untreated, is fatal; a disease that almost took her life when she was ten days old.   When Rosalina was nine months old she received a living-related liver transplant.  The transplant had immediate complications. These complications led to three surgeries in five days, over 40 interventional radiology visits, and countless clinic visits.  Not to mention the medication and lab visits. Two years after her first surgery she was listed for a new liver.  After fighting death, and surviving a liver transplant as an infant, my baby is going to have to go through all of this again.

Once again my husband and I have to hand our child over to a team of surgeons and put her life in their hands. We have to once again sit and wait, praying she can fight to be here with us.  We have to once again start over and hope this transplant is forever.  We have to wonder how we will explain all this to Rosie because she understands so much more now, at four-years-old, than she did when she was nine months old.

Being a mother to a child with chronic illness comes with all the same love, joy, exhaustion, and fear as any other mother. Our hearts are filled with a love that we did not know was possible before motherhood.  When our child is in pain our hearts break in two.  We want to take it all away for them.

The weight of it all can bring anyone down.  The trauma to your child is a trauma to your heart.  Yet, as a mother, I know what my daughter needs is for me to be strong. She needs to look into my eyes and know it will all be okay. She needs me to hold her and tell I am sorry she has to go through this, and if mommy could take it all away I would.

My situation is not unique.  Single mothers, working mothers, stay at home mothers; we all endure stress and obstacles.  Our battles may be different, but we have one common goal and that is to protect and love our children.

Our last hospital admission I had to take a conference call for work, and Rosie told me she had to go potty.  No big deal, except she was hooked up to monitors and an IV pole.  There I was, trying take my call and wheel her to the bathroom with the pole attached.  We all fight to maintain balance. We are all trying to do the best we can despite the constant exhaustion and worry.

I wake up every day knowing I have to be that rock of love, safety, and positivity for my family.  Motherhood is such a beautiful blessing.  I was almost robbed of that gift, so I never take one day for granted. I remember when my daughter is losing her mind because I gave her the wrong colored sippy cup, that I am lucky to be in this moment.

I used to feel that mothers with healthy children could not understand what my pain felt like, and they only have to worry about “normal” kid stuff.  It took me a while to understand that all mothers feel the same pain when their child suffers.   We need to help and support each other; not compare who has it harder.  Not compare the milestones our kids are reaching faster. Not compare who is doing a better job.  We need to rejoice in the blessings we have that our child is here with us.  Tomorrow is not promised for any of us.

Motherhood changes you, and for me it brought empathy and compassion.   I hope we can all learn that there are no perfect moms. We are doing the best we can every day.  The next time you see a mom struggling, give her a kind word.  Let her know she is doing great.  You never know how much she needs that in her life.

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Sarah Vargas is working mother who resides in Pittsburgh, PA. She is advocate for rare disease and organ donation.

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