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HealthLifeParenting

5 lessons my child’s birth defect taught me

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HealthLifeParenting

5 lessons my child’s birth defect taught me

Without my son, I would still not understand a mother’s love, nor value the gift of life as deeply as I do today. Without my son and his birth defect, I would not be me. And I thank Allah for the path he has led us down every day. Alhamdulilah.

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Without my son, I would still not understand a mother’s love, nor value the gift of life as deeply as I do today. Without my son and his birth defect, I would not be me. And I thank Allah for the path he has led us down every day. Alhamdulilah.

Our son entered the world at 8:00 pm – soon after, we realized that our lives would forever be changed. Although this day stands as the best day of my husband and I’s life, it also tops the list as the worst. And the reason behind this is simple — on July 16th, 2019 we were told our son would be with us only a few days, with an anticipated maximum life span of one week. By the grace of Ar-Rahim, our son exceeded these expectations and has since given us many months of love, lessons, and laughs, with, Inshallah, many more to come. 

Our journey since this day has been anything but easy. Filled with a continuous stream of hospital stays, surgeries, doctor appointments, medication regimens, and various experiments to attempt and debunk the mystery beneath Gastroschisis (see end of article for more information on this condition), we have developed a new variation of normal that we have never endured before. But alongside all of these obstacles we have also found a level of joy, a new level of trust, and a new level of faith. Alhamdulilah. 

Each day, I remind myself that Allah knows what’s best for us all. Filled with the belief that Ar-Rahman only places challenges on his followers that He knows they can handle, our family is able to push forward and see the benefits beneath the haze of a long-term birth defect. 

Throughout my son’s life, we have learned various life lessons that have evolved us into stronger, more capable individuals. The most prominent five are listed below and can be applied to all walks of life, by all types of individuals, and in regard to all subjects.

1) Nothing is possible without family support

I don’t say this lightly. I gave birth to my son in Amman, Jordan instead of returning to the United States so that I could deliver with my husband by my side. After we found out about my son’s life span, my husband phoned my parents and they immediately booked the next flight to Jordan to come and stand by our side on the hardest day of our life. Without their assistance and guidance, our son might not be here today. 

Furthermore, because of this experience, my husband has become my best friend. Long hospital stays are mentally and emotionally draining as is, but I can’t imagine the difficulties that would arise from these stays without his accompaniment. We may not have the time we would ideally desire to invest in outside relationships at the moment, but our son’s condition has shown us that we are strongest together. I not only rely on my husband as a spouse, but also as a friend, as a counselor, and as an equal co-parent. This connection we have formed over the past few months has not only drawn us closer but also illustrated that if we can get through this, we can get through anything.

2) Faith is the best medicine

If I didn’t believe that Allah had control of everything, I would have lost control of myself a long time ago. By saying Alhamdulilah every chance possible and truly believing it, one becomes more accepting of his/her current state. One has to truly have faith in the fact that Ar-Rahim has a plan for us all in order to truly be a Muslim – this doesn’t just apply when he brings good into our lives, it has to apply when we face hardship as well. I will forever hold the faith that Allah will show us the way, improve my son’s current state, and position us exactly where He wants us in life. But, I am also confident that everything that has happened thus far is according to His larger plan, which assists significantly in acceptance of our current situation. 

When it comes time for our son to undergo a surgical operation, we must have faith that Allah will not only help our child recover quickly, but also assist the surgeon in performing the tasks at hand. Nothing will be accomplished if it is not by Allah’s will, no matter the skill of the surgeon nor the willpower of the patient. Yet if one holds his/her faith in Ar Razzaaq, even the most complicated tasks have the potential to become simple.

3) If you lose hope, you lose everything

I struggle with this point every single day. Seriously – it’s a constant battle. What brings me back? The above point is always the solution, as my faith in Allah is stronger than my doubts. I strive every day to not lose hope in taking our son on world adventures. I strive every day to not lose hope that he will overcome this birth defect. I strive every day to not lose hope in him attending normal school, or engaging in sports, or even going to sleepovers or out with friends. I strive every day to not lose hope in being able to move without first considering hospital options. Long story short, I strive every day to not lose hope. Because without hope, you have nothing. 

Hope is what gets you through the month-long hospital stays. Hope is what pushes you to wake up every two hours throughout the night for feedings to attempt to prevent g-tube placement (see end of article for more information). Hope is what encourages you to get out of bed in the morning to work on developmental tasks to overcompensate for extended hospitalizations. Hope is what makes you strong, what makes you fight back the tears that would never stop if they started, and what makes you reevaluate your priorities in the short term to be more prepared for the future.

4) Unexpected life changes shouldn’t be deemed undesired life changes

I repeat — unexpected life changes shouldn’t be deemed undesirable life changes. Whether this is in regard to employment, life, children, friends, travel, etc., Allah has a plan for us all. And just because His plan does not match up with ours does not mean that His plan is less than ours in any way. 

For a while, I struggled because I couldn’t understand why this would happen to us – to my son. But, what I soon came to realize is that I don’t have to understand. Allah owes us no explanation, no justification, and no compromises because Allah and Allah alone knows what is best for us. 

Furthermore, one door leads to another, which leads to another, and so on. Our life is simply a hallway with numerous doors, some of which we open, and others we leave closed. Who are we to know what door is best for us to open? One door may have a new coat of paint, boast the newest knob, and be bordered with clean, elegant trim; however, it may lead to an empty room. Whereas another door may be due for a touch-up, holding knobs that are slightly tarnished, yet reveal a wonderful surprise within. We cannot see the other side of the door, but our Creator can. Thus, we must trust in Him with all of our hearts, souls, and minds, even if the door He opens for us is not the same one that we would have initially chosen. 

Holding this mindset allows the world and the obstacles within to seem a lot more manageable because, after all, we should always trust in Allah, because Allah loves those who trust in Him.

5) Trust is not conditional

An extension of the lesson above, it is essential to remember that trust is not conditional. It is easy to thank Allah when He provides us with something that we desire, yet it is often difficult to thank Him when he gifts us something we would deem to be negative. We claim that we trusted in Him the entire time once our prayers are answered, yet while we are praying and waiting, we often are doubtful that our needs will be heard. We say Inshallah, yet when Allah does not provide us the exact outcome we dreamt of, we feel disappointed, discouraged, and frustrated. But, again, who are we to know what outcome is best for us? Who are we to know what outcome we are meant to receive? Who are we to know what we truly desire? Our Creator is all-knowing, Al ‘Aleem, and we must always trust fully in Him. 

For He has provided me with the most wonderful gift, a son, who will carry my husband’s name. A son to raise in the name of Allah, to teach the Quran too, to guide down a righteous path. A son who will care for me in my old age, create a family of his own, and carry the lessons of Islam to another generation. Without my son, I wouldn’t have learned and shared these lessons, which will, Inshallah, help others in the same situation. I would not have moved to my current city, nor engaged with the people that I have met since residing here. Without my son, I would still not understand a mother’s love, nor value the gift of life as deeply as I do today. Without my son, I would not hold the same level of appreciation for health, freedom, and normalcy. Without my son and his birth defect, I would not be me. And I thank Allah for the path he has led us down every day. Alhamdulilah.


 To learn more about Gastroschisis, please visit this link published by the CDC: 

https://www.cdc.gov/ncbddd/birthdefects/gastroschisis.html

A gastrostomy tube (also called a G-tube) is a tube inserted through the belly that brings nutrition directly to the stomach. 

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