March 20, 2014 is the day I will always remember. It was the first time my husband and I were told there was something wrong with our son. I remember everything we were told. I remember every word the ultrasound tech said. I remember the instant pain I felt in my entire body. The shock of knowing the dreams I had for this pregnancy were not going to come true. The stabbing pain in my heart after hearing our son, our only son, is sick and may never be born.
Throughout the year, there were many times I didn’t know how I was going to survive. I didn’t know if I would ever come out of my depression, my sadness, my pain. I didn’t know if my son was ever going to be healthy and happy. We were told over and over again that he may never even take a breath. It did not look good, and his prognosis was fatal. How am I going to get through this?
But here we are, a year later. Other than dialysis, our son is pretty healthy. (I am chuckling to myself saying “other than dialysis,” because this machine, this dialysis machine is what keeps my son alive on a daily basis), but other than that, he is pretty healthy. Especially compared to other babies with kidney disease.
I have been reflecting back on this year for a few weeks now. And I want to share my opinion and advice to other mamas who have recently been given a prenatal diagnosis. Since starting Made For A Miracle, I have wanted to share my own list of what to do when you are newly diagnosed. I hope this helps someone else.
So, when you are first diagnosed, this is what I think you should do:
1. Breathe! You need to breathe. I know you are in shock and you are holding your breath, but let that breath out. Inhale. Exhale.
2. Cry if you need to. I remember walking out of the ultrasound room, calm but in shock. I smiled and scheduled another appointment at the front desk. I stood in front of the elevator with my just-as-shocked husband. There were other people in the office, and I didn’t want to scare any other patients. I stepped into the elevator, the doors closed and I lost it. I cried. I cried loudly and uncontrollably. When the doors opened, my husband helped me step out of the elevator. He held me and just let me cry. I couldn’t control my tears. I couldn’t control the moans coming out of my mouth. But I only cried for a few minutes. That was enough for me.
3. Have that talk with your spouse. Make a pact. Make a promise to each other. Let each other know, in clear words, that no matter what happens, you will stick together. Sit right across from each other, hold hands and sincerely have this talk. Understand that a child’s diagnosis, even a prenatal diagnosis, is going to do one of two things: either bring you closer together, or tear you apart. Understand that it is you two in this. Only you two.
Support each other no matter how the other handles anything that comes your way. Talk to each other. Confide in each other. Stay open with your communication. Understand that the other handles things much differently than you and support how they choose to deal with. Give whatever you can to the other — you are partners in this. Remember that.
4. Research. People used to tell me, “Don’t Google! Google is bad!” But I had to know. I had to know exactly what was going on with my son. I needed to know the statistics. I needed to know the prognosis. I needed to know answers, options, results. I needed to know what doctors were going to do. I needed to know what other doctors have done. I needed to know what doctors could do. And I needed to know what they will do. I mostly looked at scholarly articles from other children’s hospitals. And when we went into our first Maternal Fetal Medicine appointment, I had a list of questions and options ready for the doctors.
I am proud to say, knowing what to expect and knowing what they were talking about really helped us through the rest of the pregnancy. Doctors knew we weren’t going to let them tell us, “Oh sorry, it’s too late.” Um, no! You can do this, this and this. Thank you!
5. Pray. And pray specifically. Our son was given less than a 10 percent chance of surviving the rest of our pregnancy. All I had was hope, and I prayed like I have never prayed before. But I never knew to pray specifically. I just prayed for my son to be born. I prayed for him to be alive. But I didn’t know to be specific with my prayers. I should have prayed for my son Matthew’s lungs to be healthy, for his kidneys to have more than 50 percent function, for the pregnancy to be able to continue for at least two more weeks, for Matthew not to need dialysis, for him to be born healthy enough to have an almost normal life. I should have prayed specifically, step by step, of what I wanted to be.
6. Have faith. My husband would reassure me that all we needed was faith the size of a mustard seed. There was so much negativity about Matthew’s prognosis, it felt like all we had was that mustard seed. And I held on to that mustard seed of faith. I held it in my hand every day. I would picture this little tiny seed in my head, and I thanked God for it. I relied on this little seed of faith. Faith was the only little positive thing we had.
7. Write it down. Write it all down. Buy a journal, a notebook, a composition book and start your journal. There were days I couldn’t write. Days I couldn’t express what I felt. So I would write words. There are so many pages in my book that I just have words and doodles. I wrote scriptures down, quotes I had heard, songs that were playing. I wrote it down. Although still to this day, I have not opened “those” books. I am glad I have them. Maybe one day I will.
8. Enjoy life. Yes, I said it! Enjoy your pregnancy. For me, this was one of the hardest things to do. How can I celebrate this pregnancy? How can I celebrate life when it’s like this? It took me about 10 weeks to learn this, but I finally did. I began to thank God for these twins. I was so grateful to believe Lord gifted me with a son. That no matter what happens in the future, I have a son. I have a daughter. I have twins. And I love them with everything in me. And although they weren’t born yet, I needed to be happy and give them all the joy and strength they need to get healthy and strong for themselves.
I took photos of my belly. I took photos of the kids touching my belly. I took video of their kicks and their movements. Like my other kids, I was going to do anything and everything that made them happy. My kids and I would sing to them, talk to them and read to them. Both my mom and mother-in-law planned baby showers to celebrate life. I didn’t realize it at the time, but I know now that was confirmation for me. Unfortunately I realized this too late, but those last two weeks that I carried them were beautiful. Celebrate life.
9. Did I mention to breathe and cry? Because you need to do these two things. Know that it is OK to cry. Take those deep breaths. I know, easier said than done. But it is something I wish I did a lot earlier in the diagnosis. I wish I could have cried more. I wish I could cry now. I still catch myself when I am about to cry, and I stop myself. It is something I’m still working on. It is OK to let go and cry. Mourn the normalcy that you once knew. Life will be changed forever, and it will never be the normal you have always known Accept the new life I believe God has blessed you with and move forward.
#10. Believe that a miracle might happen. If your baby defies the odds, you really won’t be able to breathe! They will take your breath away. They will make you speechless. Your baby will be much stronger than you will ever have to be. Your baby will deal with things most adults never will. Know and understand to your very core that your baby is a superhero. You will never ever understand why you or your baby had to go through the rough start. You will never know why or understand why your baby has this diagnosis. But I believe when you let go of all your thoughts and your pre-diagnosis hopes, a miracle can be possible. You, your spouse, the nurses and those doctors might be witnesses to what can only be described as a miracle.
I don’t know why we went through what we went through. I don’t know why we are going through what we are going through now. All I believe is He holds our tomorrow.
I never knew how powerful prayer and faith were until it was all I had to rely on. Pray specifically and hold onto your seed. Have hope. Have faith. And know what is going on. Stay informed and make sure those doctors know that you expect them to do everything in their power. That if there is one glimmer of chance, grab hold of that chance, that positive percentage.
Editor’s note: Because of the sensitive nature of this story, we have made a few more edits after publishing.
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