When Being Strong Is The Only Choice

This is a guest post by Alycia Nicholas.

“You never know how strong you are until being strong is your only choice.” I have always prided myself on being a strong woman, but I never imagined the extent to which my strength would be tested when my husband and I embarked on our simultaneously amazing and heartbreaking journey to start a family.

I got pregnant at a perfect time in our lives and we were as ready as we ever would be. I was 30 and had always felt that was an ideal age to have kids. My husband and I had already been married for five years, had both just completed our master’s degree programs, and were in a financially stable place. I was beyond ecstatic…sending out cute announcement cards to our immediate family, and spilling the news to my husband in a helicopter above the Grand Canyon.

“Miscarriage” was a word I naively never thought would apply to me, but weeks later, there it was on the ultrasound screen…an empty sac without a growing embryo (blighted ovum). I got pregnant for a second time just a few months later, and was transported back to a harsh reality, this time with a hazy image in place of a distinct embryo that would never get a chance to grow into a living, breathing person.

In doing research and talking with other people, I learned that miscarriages are widespread, but to me, one time may be common, but twice in my book was more than just a coincidence. I yearned for an answer so that we could move on with confidence, but all test results came back normal.

A couple of months passed, and I found myself full of worry and fear, holding a positive pregnancy test in my hand for the third time in half a year. Seeing and hearing my daughter’s heart beat on the ultrasound screen for the very first time when she was just five weeks in utero is something I will always remember. I was completely in awe and in love and that heart beat was enough to erase any remaining worry and fear.

I had an uneventful (in a good way!) pregnancy, genuinely loved being pregnant, and wholeheartedly embraced the privilege of having this little person growing inside of me. Nine months later, I was satisfied with how my labor and delivery experience panned out, and Ayva received an almost perfect APGAR score.

“We just want the baby to be healthy.”  Despite having experienced two previous miscarriages and knowing all too well the bad things that can happen in this good world, little did I know just how personally this common refrain would come to hit home with me.

After Ayva was taken for more testing, a cardiologist came into the recovery room and informed us that our precious daughter had a heart condition called Tetralogy of Fallot that would require surgery at around 4-6 months of age.  This is news that would be simply unfathomable to any parent, and it was especially that to us as first-time parents.

My gynecologist was as shocked and dumbfounded as we were. I had always been healthy… I exercised, did not smoke or drink, ate well, took prenatal vitamins and had regular check-ups, read books to educate myself, and maintained a happy state of mind throughout the pregnancy. In a nutshell, I had done everything “right,” so how could this have happened?

I admit that the rhetorical “Why me?” and more importantly “Why her?” questions manage to sneak in through a crack and enter my mind every now and again, and I have to try hard to push them away. I say “rhetorical” because these are questions that will sadly never be answered.

When our precious little Ayva had open heart surgery at just four months old, we found out that her heart condition was caused by a random genetic defect that went by the name of 22q11.2 Deletion Syndrome. Despite being told that it is not my fault and that there was nothing I could have done to prevent any of this from ever happening, I still can’t help but feel a tinge of self-imposed guilt and blame for all that Ayva has to go through. She had a catheterization procedure soon after her surgery to place a stent in her pulmonary artery and has since had another procedure to enlarge the stent, with more to come in the future.

In the first two years of her life, she has already been put under general anesthesia four times. It is these times when I know that my daughter will have to experience unfair and unnecessary pain, hardship, and suffering at such an early age that really test my limits as a Mother. As her Mother, I am supposed to protect and shelter her from harm, but I am instead forced to completely surrender and relinquish all control to the specialists who care for her and essentially, have her very life in their hands.

Another challenging aspect about having a child with this condition is researching and having a list of possible symptoms in front of you, but not knowing exactly which may end up presenting themselves, and when.

A doctor once went over our history with us, and it was a surreal moment as I couldn’t believe that he was talking about us and that this was really our lives. It sounded much worse to have someone else project our reality back onto us!

On a daily basis and the majority of the time, thankfully, I don’t feel that it’s that bad. Despite Ayva’s diagnosis, I have high expectations of her, encourage her to be independent and self-sufficient, and treat and challenge her as I would any other child. I don’t want her to ever feel that she is less than other kids or that she can’t do the things that they can, as everyone is different and everyone has their own unique strengths and weaknesses.

Her diagnosis has and will shape her in many ways, and she needs to be aware of how it will impact her life (such as having a 50% chance of passing it on to her own children), but it is not all of her, it does not define her, and I want her to know that she is so much more than a label.

There are many questions that remain about my daughter’s future: When will her talking start to take off and will she have speech and/or language issues for the rest of her life? Will she always aspirate and be on thickened feeds? Will she have to have another open heart surgery for her valve when she’s older or will technology advance to the point where the problem can be fixed via a less invasive procedure?

A Mother like me has to slowly learn to become very comfortable with letting go, not knowing, and having many unanswered questions. I learned firsthand that life will not go as planned. Life has a life of its own, there is only so much we can control, and there will be many instances where we will just be forced to surrender and have faith that everything will be okay.

Luckily, I have always been the type of person to try my best to look for the silver lining and learn something from every situation, especially the bad ones. The events that I have been through the past few years will forever mark a turning point in my life and how I live it. I can’t help but think that there is a reason and that something or someone somewhere is trying to tell me something. I think it will be a lifelong journey trying to figure out what that is. All I can do is to keep doing the best I can with whatever circumstances I find myself in. This doesn’t mean that I don’t have bad days and hard times, just like everyone else, it just means that I don’t stay in those bad days and hard times.

One thing that all of this has taught me is that NOW is the time. Now is the time to be happy, go for what you want, and make you the best you that you can be. I do believe that things happen for a reason and that there is always a lesson to be learned and growth to be experienced, if you are open to it. Life is fleeting, it goes fast (especially I feel, as you get older and once you have children!), and soon our children will be grown, and we will be old.

What do I want to say for myself at the end of my life?  This is what motivates and inspires me to work at becoming a better person and living a more fulfilled life each and every day. My daughter has already accomplished a lot in her short life by changing my world and making me want to live a better life and be a better person. Admittedly, I am not and never will be perfect, we are all a work in progress, but I am well on my journey.

Up until my daughter was born, I had never really felt like I had found my true calling, but I knew right after my daughter was born and we were given such horrible news, that my purpose in life was to be her Mother. I believe that it is and will be one of the highest callings in my life. She is a miracle and has taught me that life, in and of itself, is a blessing. As my sister once said, “Just because she has this condition, does not mean she never should have been born.”  Life would have been a true tragedy for many had she not entered our worlds and made such an impact on us.

Count your blessings!  I am thankful that I am such a strong Mama who comes from a long line of strong women. I am thankful that I studied issues of equality, social justice, and education in college (definitely not money-making fields!) because it makes me a better parent. I am thankful that my husband’s job took us to Houston…one of the best places in the country for Ayva to have her surgery. I am thankful that we have good health insurance, and for so much more.

Yes, we may have had a lot of wrong in our lives, but we have also had a lot of rights.  Some of our questions may never be answered, but we can always do the best with what we are given, no matter our circumstances.

Alycia Nicholas was a teacher before giving birth to her daughter, Ayva, in 2011. She feels incredibly blessed to have been able to spend the past two years as a stay-at-home Mom. She has lived in many different places, but currently lives with her husband and daughter in California.

For more information or to donate please visit:

Dempster Family Foundation  The International 22q11.2 Foundation, Inc.  Angels with Missing Pieces  Mission 22q  Max Appeal!

 

This post is part of the Growing from Motherhood series. To see more posts in this series click here.