February 13, 2015
With Jenni turning 32 in less than 2 weeks, I always reflect back on her birth, and life, and this year is no different. Life has so many different roads and paths and you never know what can happen from one day to the next. Never knowing which fork in the road will be laid out in front of you. Many times you have no choice in the matter of which one to travel.
When we make plans and dream to have children and let our imaginations play out in our minds, seeing ourselves as parents, we can only imagine a feeling of happiness and joy as we picture life with our perfectly developing and functioning children. The thought of having a child who may have a disability, physical or neurological, never enters our mind. At least not mine. Unless of course anything is picked up in utero, we as patiently expectant parents, just sit back and eagerly await the arrival of our sweet little bundle of joy.
Then, the big day arrives: the day which we go into labor and give birth to our much-loved and long awaited baby. Of course, we ALL feel love and happiness for our newborn, but it never enters your mind that we can be suddenly faced with heartache and agony, as our tiny baby is not quite right. I am thankful that we knew very early on with Jenni, what we in store for. (Well, SORT OF had an idea, from the old outdated books we got at the local library which were close to 40 years old at printing. They were downright petrifying.) There are also those parents who have no idea that as their child grows, certain concerning behaviors or underlying disabling conditions may emerge, and life then starts to take a completely different path than we anticipated. This happened with our firstborn, Kimberly.
There are five stages of grieving and they are the same as the five stages of dying: denial, anger, bargaining, depression and acceptance. I went through them ALL when I had Jenni. At first, I denied it. I knew she looked a bit different than her two older sisters but she didn’t have that complete look of someone with Down syndrome. Anger hit and I was mad, mad, mad. Mad at who? Who knows. I didn’t let it show, I kept it shoved deep down inside my gut. It didn’t last long though. When we were waiting for the genetic testing to be complete through UCLA, I would plead with God, bargaining, to make the diagnosis come out negative. I’d be willing to do this or that, for life, if Jenni were to be just a ‘regular’ baby. I did go through depression but that was later on, once her milestones around two years, were really dragging behind. And the following year, and so on and so on. And acceptance. Good old acceptance. Luckily I accepted the fact that my daughter had a life long disability and didn’t sugar coat it. I had NO idea where she would be on the cognitive/intellectual level, and I put my all into her from the day she started the infant-stim program at 4 weeks of age. But this sweet little cherub was loved from the moment she popped into this world. Down syndrome or not.
Recently on facebook, there was the article circulating about the father who took his baby, born with Down syndrome, to raise the infant in New Zealand, after his wife gave birth to the baby in Armenia. The wife refused to keep the baby and said her family wouldn’t accept him- or something close to this. She told her husband she couldn’t stay married to him if he chose to keep the baby, so they are divorcing. So many people were quite cruel regarding the mother’s attitude, from saying “When you get pregnant, you have to know your child might come out disabled”; “She’s a horrible bitch”; “Who could do that to a baby”, etc…. I can’t speak for this woman or even know where her thinking came from, but I do know that I would never judge someone on something so sensitive as this. I have met several people since Jenni was born who did something similar and I know it was hard and difficult for them to make this decision. You don’t know HOW you will react when your precious bundle of joy is born less than perfect in society’s eyes. Some parents equate this birth as a death, a loss, as hard as that may sound. Every loss and every response to loss is unique to the individual experiencing it. And every person progresses through their own personal stages of grief in their own order and time. I thank the Lord everyday that I didn’t wallow in pity. My stages of grief were rather fast. VERY FAST. And she was a ‘regular’ baby. She acted just as her two sisters had as infants.
It’s a rough road, raising a child with ANY type of disability. There are people out there who are rude and cruel and all I want to do is protect my child from those people. Unfortunately I have met too many of these asinine individuals that I care to think of. I have had many, many times over the years to not exactly say “Why me? Or Why Her?” when I see so many of her peers having passed her on by with the simplest of tasks, but always wondered “How come?” this small feat or that little task never came to fruition with her? Schooling, speech, and everything else we did with and for her, just like her peers did, never played out for her. There are many things she can’t enjoy and I try not to dwell on those scenarios as it does bring me down (and I am usually NOT a down-dwelling person). After 31 ½ years of bathing, brushing teeth, dressing her, I am used to the routine of Jenni being totally dependent on others for her care. It is something I never expected in my wildest dreams to be doing 32 years later, while I was pregnant with her, but I wouldn’t change her personality for the world. My only wish would be that she could talk to me. That’s my one dream I think I will always have. It’s good to dream.