Losing a loved one is never easy and losing a child at any age or any stage is a tremendous loss.
Sometimes I feel that my life has been an enormous tragedy but thankfully, I have a silver lining and I have a good life.
Many of you know about Emma's story of being shaken, slammed and living with lifelong disabilities because of her traumatic brain injury. Emma's life has been full of joy, tears, pain and happiness. She is a lucky one. If you even want to use the word "lucky" in the same thought as shaken baby syndrome but she is. Overall, her health is good. She has many impediments but she is overall a normal, healthy little girl who is full of life and energy and makes me laugh non stop. Emma has sisters that I rarely talk about. Emma is not my first child. As a matter of fact, she is my third child.
In 2000, I gave birth to a beautiful little girl at 32 weeks gestation. She passed away an hour and a half after being born. She was 17" long and 4.5 lbs. I knew she wouldn't live long after her birth so I held her. I held her as I watched her struggle to breathe and she never opened her eyes. Alanna was diagnosed when I was 23 weeks pregnant with bilateral fetal polycystic kidney disease. Due to both kidneys being full of cysts, her kidneys enlarged and she was unable to urinate the amniotic fluid back out thus deceasing causing her lungs and heart to become hypoplastic. On top of that, my uterus was crushing her because there was not enough fluid to cushion her. When a baby has both kidneys affected, they can do dialysis until they are old enough and at a weight to be able to get a kidney transplant. However, when on dialysis there won't be much growth so we end up spinning our wheels. Instead, I opted to let her go naturally. No rescue attempts. Just let her be in peace. I went into labor early and I spent as much time with her until it was time to let her go. She had a respiratory arrest and died in my arms. Thirteen years this September and I still grieve for her. The grief isn't as strong as it was and most days are better than others. There is no timeline for grief. You will never stop grieving but the time makes it easier to deal with the loss.
Sadly, not long after Alanna, I became pregnant again. Entirely too soon. I was angry and hurt and devastated and all the emotions wrapped up in one. I waited to get maternity care. I thought if I ignored the reality, it would go away. Well? What do you expect from somebody grieving?! I finally went to the doctor when I was 18 weeks along and because of my history, I started ultrasounds immediately. At 21 weeks, the scans showed that this baby had the same disease infesting the kidneys. I was asked if I wanted to know the sex. I said no. Mind you, this is the same perinatologist I saw in my last pregnancy. Because I was also early enough in my pregnancy- I was given the option to continue on with the pregnancy or to terminate. I remember the what my first daughter went through and I couldn't go through it again. I opted to terminate. Mind you, the termination isn't what you think. I was admitted to the hospital and I was induced at 23 weeks. My baby was born and although I didn't want to know her sex during the ultrasound, I found out at birth she was a girl. Another beautiful baby girl. I held her tiny body until her heart stopped beating three hours later. This time, I opted for an autopsy as I needed to know if this was a genetic issue. Polycystic kidney disease is a genetic disease. The autopsy revealed that she had fetal diffuse renal multicystic dysplasia. That is not genetic and it's not common to have two back to back. I carry a kidney gene that is imperfect (the best word I can think of) and my ex carried a translocated gene (an extra gene that in our case, attached to the gene that causes the kidney disease). I still think of her often. I think of both of my girls often.
In 2000, I buried my first daughter.
In 2001, I buried my second daughter.
In 2003, I gave birth to my Emma.
In 2004, I nearly buried Emma.
Now? Although I grieve over all the above losses, I focus on what I have now.
If you have faced a loss, do not put a timeline on your grief.
You never get over it, that's cruel to suggest one should get OVER a loss, but you do get through it. I promise.