I hesitated to share this because it is deeply personal by my husband encouraged me. He said that sharing is good and could potentially reach someone else who's going through a hard time. So that said, here's a piece I wrote earlier this week...
February 29, 2016
I have had a story to share for a long time, but the time just hasn’t been right. For some reason, that time is today. I’ve come to realize that this is just how I write. I will have something bottled inside and it bubbles up until the exact moment when I can’t keep it inside any longer. It doesn’t really matter if it’s convenient for it to be shared at that moment. All I know is that for whatever reason, it’s ready. Today is Leap Day 2016. There’s something mysterious and special about Leap Day. It almost feels otherworldly to know that this day didn’t happen last year and it won’t happen next year. I bet it would be really strange to have a birthday on this day. Speaking of birthdays, a very special thing happened in the life of one of my good friend yesterday. She gave birth to a beautiful baby girl. But not just any baby girl. It’s a baby that she is calling her “belly buddy” because my friend was a gestational carrier. Formerly known as a surrogate, my friend went through a long and arduous process so that another family could have the precious gift of life. She spent nine long months, and countless before including a failed procedure, donating her body to give life and joy to an amazing family. I don’t know the whole story but I do know that it had to do with a medical condition that rendered the mother unable to carry another child. The family already has one little girl and wanted to give her a sibling. So my friend volunteered. She volunteered to give her time, her love, her friendship, and her body in order to help others feel more complete. I just can’t wrap my head and heart around the magnanimity of this gesture. Every time I think about it it makes me want to cry. I am so proud to know such a wonderful person who would be so selfless and so giving. She was finished building her own family so she helped another. It’s truly something special.
I think the whole subject means something more to me, too, because of what my family has been through in the last couple of years. In a few days it will be the anniversary of something that was very difficult to experience but has been even more difficult for me to share with others. But my heart feels that it is time for sharing so that it can be time for healing.
It all started in May of 2014. Bryan and I had been talking for some time about trying for another baby but with me being a carrier of a genetic condition (Duchenne MD) it would be risky to do so naturally. Our son is perfect just the way he is but having DMD will not be easy for him as he grows older. It will be challenging and sometimes painful. There will be a lot of obstacles he will have to navigate. It’s scary to think that we could place that responsibility on another child we would have. Any boy we would have would have a 50% chance of having DMD and any girl would have a 50% chance of being a carrier. We have considered adoption but it is very expensive and riddled with hoops to jump through and the fear of interruptions. I didn’t know if my heart could handle the loss of a baby after placement, so we decided to try a different route.
I had spent a lot of time looking into the idea of In-Vitro Fertilization (IVF) with preimplantation genetic diagnosis (PGD). This is a procedure by which an embryo is diagnosed before it would be implanted into a woman’s uterus. This would determine if the embryo was a carrier or affected by a genetic condition before implantation. This procedure has been considered by some people to be ethically debatable so it took a lot of hours of prayer and many, many weeks and months of weighing the options to make the decision to move forward. But we finally did. We met with our doctor to discuss the process and give some background information. It turned out that the process would take a lot longer than I even realized - months to collect genetic information, months to process the information, and still more months to complete the procedure. But by the end of it all, there was a good chance that we would have a baby without Duchenne. I wanted this so badly. Even now, saying it out loud feels so wrong to me because Bennett is 100% perfect, even with DMD. He is exactly the way he was supposed to be and I love him more than anything in the entire universe. But I worry about him. I worry that something will happen to Bryan and me and there will be no one to help take care of him. I worry that he will be lonely growing up as an only child. I worry that he will need an extra family member to have his back one day when he is older and he won’t have anyone to rely on. But then that’s not the only reason to have another child. I have always thought I would have two children. My heart is so full of love for Bennett and everyone I know tells me that it only grows exponentially when you have another child. I believe this with all of my heart. I love spending time with my baby boy. We have so much fun together. I love teaching him and learning together, laughing together. I look at other people’s families and I love it when the siblings fight. I love it when they argue. I love seeing the pictures of when they have sleepovers and play with each other’s toys, play dress up, go on trips together. I never grew up with my siblings close by and didn’t even know them until I was almost an adult. I feel like there are a lot of things I missed out on by not having them around. I desperately wanted a sibling when I was growing up. I BEGGED my mom for a little brother or sister all the time. And Bennett is just like me. He has even named his future sibling. (FYI: she’s a girl and her name is Ariel.)
So we started the process. We spent the summer going to appointments and getting things in order to start. They had to collect genetic information from me, Bryan and Bennett in order to develop the “probe” that would be used to compare to the embryos. Of course the dystrophin gene is a very long gene so it was a complicated process that took a while. They had to locate the information needed to help them diagnose the embryos. After what felt like an eternity we were finally ready to move forward in October. I started taking medication to regulate things and then began giving myself daily shots in November. We were hopeful. The doctor felt that we had a good chance of getting a lot of eggs due to my being young and having no fertility problems. So this was good. But it was stressful, mostly because it was financially very expensive and our insurance didn’t cover the procedure at all. (This is something I don’t understand because why wouldn’t they want to prevent a costly condition from occurring. But whatever.) So this was all out of pocket. I struggled a lot with the cost. It was so much money to spend and I felt very guilty that we weren’t saving that money for Bennett’s future. But on the other hand, I knew that if we didn’t at least try I would probably regret it forever. There were a lot of emotions involved with this process every step of the way: guilt, anxiety, fear, worry, joy, exasperation, pain. Even though I felt like a pincushion with a thousand little pokes in my belly every night, those weren’t so bad. I took off a lot of half days for blood work and to prepare to “harvest” the eggs.The procedure to actually obtain the eggs was a bit painful but not the worst thing ever. I had to rest a lot that day and then I was back to normal.
When the procedure was completed, we got something like 13 eggs. The doctor was hoping for more but said that it was still a good number. They would take them to the lab and do their magic and then we would see how many embryos developed. And then there was the wait. We had to send the biopsy off to the lab for them to do the PGD and diagnose them. But how many would we have by the time the optimal day arrived?
We ended up with four. The biopsies were sent and then we waited. And waited. We were hoping to know the results before Christmas but there was some confusion at the lab. I can’t remember now but I think we found out the Friday after the holiday. There was one embryo that had Duchenne. The other three did not have Duchenne. There was one unaffected boy and two non-carrier girls. I was over the moon. It was surreal. There was really a possibility that we could have another baby who would not have Duchenne with a high level of certainty. We were cautiously optimistic. My friends were all excited and celebrating the good news. But we were not out of the woods yet.
A little later we got a call from the doctor’s office. The embryos had been tested for the Duchenne gene but the lab had not tested their chromosomes. This meant that there could still be problems with the integrity of the embryos. So they had to be sent off again and there would be more waiting. By this point it was January. When we got the results, they were not positive. Two of the embryos had chromosomal abnormalities. This meant that if they were to be implanted, they would result in miscarriage. So we were left with only one viable embryo for transfer. This was it. One little female non-carrier embryo was all that was left. After all the stress and uncertainty, there was one. I had to be out of town in Iowa because my grandmother was ill and later passed away, so we were not able to do the transfer in February. The timing was not right for the medication to be taken. So we started when I got back. And let me tell you. Giving yourself shots in the hip with a needle that is, no joke, three inches long and HUGE in thickness, not to mention that you’re injecting progesterone in OIL into your muscle...oh my goodness. I wouldn’t wish that pain on my worst enemy. My hips were so sore from alternating the shots daily and I began to dread those shots every day. I could barely sit down. The heating pad didn’t help. But I knew in my heart it would all be worth it to have another sweet baby to love and to be able to give Bennett a sister. In the days leading up to the transfer I was so apprehensive but still cautiously optimistic. I knew we had one shot - just one embryo - and it was a “now or never” type of thing. There would be no possible way to afford another round of IVF with PGD.
So finally it was “go time”. We planned the transfer, I drank a million ounces of water like directed, and we showed up to the doctor’s office for the procedure. Bryan and I waited in the lobby and I had to use the bathroom so badly. I prayed that they would hurry up and call me back so we could get the show on the road. The ultrasound tech poked her head out and called someone else to go back. But when we locked eyes, I knew something was up. I could feel it. A little bit later the doctor came to get us and took us straight to his office. By this point my heart was in my throat and I knew it before he even said it. I looked right at him and said, “It didn’t thaw.” And his face said everything. He responded, “No. It didn’t.” And then a thousand emotions exploded all around me. I was trying to be strong and not cry, but all I wanted to do was be pissed off at the world. I stormed out of the office with a quick, “Well, I’m going to the restroom then.” and went into the bathroom alone. I can’t remember if I started crying then or if I waited until a bit later. I finished and returned to the office. The doctor was kind and compassionate about it but honestly at that point I didn’t care. I was so, so angry with the universe. I was angry that I had wasted my time, gotten my hopes up, and spent all of my family’s money. I felt so sad and so mad and so, so stupid. I just felt like I had been taken, not by the doctor but by the whole world. I had naively and idiotically believed that something might go how I wanted it to. I can’t even remember what the doctor said. I think our conversation went something like, “Well, what’s there to say? Thank you for your help. I appreciate everything you did for us.” And then I left in a flurry, doors whooshing by as I left his office, then out of the patient door, then out of the clinic door, down the elevator, out the front door of the hospital, to the car. I was numb. I was so hurt. My heart was aching like it hadn’t ached in a long time, probably since Bennett’s diagnosis. I had failed to give him the sibling he wanted. I had failed to give my husband the second child he wanted. And it was all my stupid, dumb, Duchenne gene’s fault.
I know now looking back that that thought process is highly flawed and I was very emotional because of the loss of the expectation and the hope. I do understand that. And I understand that I am SO LUCKY AND BLESSED AND GRATEFUL to even have a child. I know there are so many people who don’t even have that. I know because my parents were those people for 13 years before they adopted me. I know because I have seen friends who have been through procedure after procedure, failed adoption matches, adoption interruptions, the death of a child. There have been so many unimaginable things that the people I care about have experienced all around me. And I questioned myself because why can’t I just be happy with the beautiful family I have? That’s a question that today, almost one year later, I am still asking myself because my heart still desires another child. I still have the ache when I see a new baby or when others are expecting or adopting. But I also feel this HUGE amount of gratitude when I see my friends and acquaintances whose dreams are coming true. One of my best friends had a beautiful baby girl back in August. One friend is pregnant after years of difficulty conceiving and is adopting her little boy from foster care in a few weeks. A coworker and friend just had a gorgeous baby boy last week. My friend I mentioned before just completed her surrogacy and has given this family a new lease on life. Another girl I know just had a baby as a result of IVF and many years of struggling. Someone else I know is in the process of adopting baby number two.
I know babies are always a blessing. No matter how they come to us they represent so much hope and life and love and possibility. And I think at this point in my life I am starting to reach a place where I will be okay if it doesn’t happen for me. I don’t think Bryan and I will ever have another baby naturally because of the genetic risks. I don’t think we will ever try IVF again because it is extremely expensive and a difficult process. But I truly feel in my heart of hearts like I lost a baby in this process and my heart is still healing. I know it’s not the same as many people experience with miscarriage, but the expectation and the hope and the joy that I felt at the possibility was lost, and that was very hard.
Who knows what will happen for us in the future. I know that Bennett is happy and loved either way. And even if he never gets his little sister Ariel, I think he will have a good life. Adoption isn’t off the table either, but the costs are a huge factor in our decision. Right now we are at an impasse. It’s hard to know what is the right decision and at this point, emotionally, I am not sure where to go from here. The desire is in my heart, but sometimes I feel having another child just may not be in the cards for me. I am learning to be okay with it. I know that life does not always work out the way you think it will and that has been abundantly clear for me. Not to sound pessimistic because I am ever the optimist, with a touch of realism.
I don’t really know how to tie this piece up and I’m not even sure I am going to share as it is very personal. Even though I am an open book, it is still hard to share the hardest things with the world. I like to if there’s a possibility that my words and feelings could help even one person get through something difficult in their lives. But who knows.
As always, though, I am in awe of the people around me and how I am continually surrounded by people who amaze me. Through it all - all the heartache and challenges life throws - I am grateful for my people who just get me, the ones who send flowers and bring chocolate, who send text messages and cards and who curl up with me and let me cry it out. So on this Leap Day, remember all those mysterious and special and otherworldly people in your life. They are what truly matters, and without them I know I personally would not survive.
