Baby and Congenital Conditions: Mom to Mom (Letter 2)

Hello Mom,

April has arrived. It is the month when my Jan-born son smiled at us for the very first time! When I look back, April was one of the most difficult months too. My son was recovering from surgery for his large VSD in April 2016. So, that was about me. But how are you?

I hope you are receiving all the support you can. You might think that you can be a strong mom and take everything in your stride. Of course, you are strong….even on the days when you don’t feel so!….. and even on the days when others believe that they should withhold information from you because your ‘sensitive heart can’t take it’!! In the middle of all this, how are you dealing with the pressures?

It is not easy. You cannot predict everything. Some days would be like a fixed routine. Some days could be scary. Sometimes (or often!), you might wonder how other moms manage. Other moms may have a lot of experience and learning. You can learn a few tips to make your life easier. But, this is not a race. Comparison with others is not fair to you or your baby. Realities are many. Your realities are not going to be the same as others.

People around you may be saying many things. Sometimes, to help you, and sometimes just like that. Not everyone will understand how everything impacts you. Not everyone can imagine how you feel when others say or ask you things like:

What caused this to your baby?
Did you take precautions during the 
solar eclipse? 
Are you breastfeeding?
Are you producing enough milk?
Do you know about this XYZ child who had 
the same problem as yours? 
You should do XYZ so that your baby 
gains weight and height! [unless, maybe 
the Doctor is saying this]        

I hope you have a friend or a family member who doesn’t judge you, doesn’t keep giving you unnecessary advice, and asks you instead of assuming things about you. Such people are more important for your emotional well-being than others. Yes, you may not have a lot of time to socialize right now. But, your well-being is important to move ahead in this journey.

You need to see others, especially the other parent of your baby, as partners in this journey. I will talk more about this in another letter. What I am trying to say is, it may seem like “I am going through this…. all alone!”, but it doesn’t have to be so. You and your baby deserve not to be alone or remain unsupported. Also, not taking support may not be a sign of independence in this situation.

And some things will be a part of your everyday life. Frequent hand-wash, use of hand sanitizer, avoiding contact with infections- all this has been a part of my life with baby. COVID-19 arrived and left. But hand sanitizers were always there at our home since our son was born. Of course, the baby will still catch infections and get sick. But, protecting oneself and the baby from infections is an important part of a mom’s life when a child has multiple health conditions, including a heart issue. Sometimes, this means deciding between pleasing others and protecting your baby.

That tiny, fragile baby needs so much of your time, strength, and focus. One day, this baby will be so big that you won’t be able to pick him/her up as you do now! Difficult to imagine this right now? Wait, stay on course. Every milestone of a child is precious, no matter how late it comes.

My son started smiling at 2.5 months of age (he was premature). It was fascinating, precious, and beautiful! Such days help us move ahead.

May you find compassionate friends and family!

Love,

Shweta

Did you miss my first letter? Read Letter 1 Here

What can you do today?

Today, I would recommend?contributing to this fundraiser?for supporting the wonderful work of an organization —?Child Heart Foundation?(CHF). CHF was founded in 2013 with the mission to provide support, care, and resources to children and their families affected by congenital heart defects (CHD). I know this organization closely and my son, born with a large VSD (and other conditions), was treated by the Cardiologist at CHF.

Please contribute to?HERE?to help with the treatment of children born with life-threatening heart defects.

*I first wrote this note on 10 June 2020. You can find the previous version?HERE