Tri-9 Mom

Almost immediately after the diagnosis, we started the process of making sure that Ben had no serious health issues

. The first test we had to subject him to was a renal ultrasound. Because of the high instance of abnormalities of the kidneys and bladder, this test was a necessity. Thankfully, Ben passed with flying colors. However, the urologist who examined Ben noted that his testicles had not descended which could lead to problems later in life This isn’t an uncommon condition, but because Ben was over a year old it led the doctor to believe that the situation would not correct itself, as it does in most cases. Normally, there would be a recommendation to perform surgery because of the higher risk of tumors or inguinal hernias for males with undescended testicles. This was not a consideration for Ben because of his multiple health problems. Instead
Ben went through a regimen of HCG injections to stimulate the glands. This did not improve the problem, but we decided to wait a few years before doing anything further.

Our next stop was Pediatric Cardiology of Virginia. An electrocardiogram was performed and there was no evidence of any of the atrial or ventricular chamber enlargements, which are the common abnormalities associated with trisomy9 patients. However, as with the renal evaluation, the diagnosis came with a big BUT. The examination detected a well-known but uncommon abnormality; an absence of an inferior vena cava which is compensated by normal drainage through a lower body superior vena cava. “No, I’m not a doctor but I did stay at a Holiday Inn Express last night.”

The doctor’s fascination had more to do with the fact that it was so rare. Basically, everything works; just not in the normal fashion. He assured us this should not have any significance with regard to heart function or any other potential organ function, such as the liver. He was so confident with the findings that he said that cardiovascular follow-up was not necessary . Sweet!

“But if somebody dies, if something happens to you, there is a normal process of depression, it is part of being human, and some people view it as a learning experience etc.”

Bob Geldof

Depression

The period of depression I went through wasn’t what you typically think of when you think of someone being depressed. My depression was not serious or even noticeable, but was definitely there. It came in the form of an apathy toward life beyond the confines of our little family. I was still working my butt off, but I lost interest in going out and living life. This was a total contrast to the “selfish years”. I used Ben as an excuse to not engage in normal life activities that connect you with other people. The result, I became a pretty lonely person. Don’t get me wrong, life with my two guys was fulfilling, but the lack of close friends to spend time with, left a big hole. It took some time for me to re-engage. I think the birth of my two younger sons forced me ease back into that life. To this day, I am much more reserved than I probably would have been had things remained on the same trajectory as they were prior to Ben’s birth. Anyone reading this who is looking for advice; don’t do what I did. Stay engaged in outside activities. Sometimes it may be easier to just stay at home. Make an effort and you will learn that it isn’t as difficult as you might have imagined. It’s all a learning experience.

“God, grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference.”

Reinhold Niebuhr

Acceptance

This acceptance to me was different from the acceptance one feels when facing the loss of a loved one. That acceptance is learning to live with the reality of loss. This acceptance was coming to the realization that Dennis and I had been chosen to take on this awesome responsibility for a reason. It is part of our life purpose. In addition, we’ve been given an opportunity that most parents don’t get. We are overseeing the life of a truly unique individual. Each small step in Ben’s development has been an exciting major milestone to be celebrated. Though my acceptance was a gradual process, I can trace back to one instance that had quite a profound effect on me.

When Ben was about three years old I was sitting in the waiting room at a doctor’s office, something I had become quite good at, and I saw a framed poem (I know many of you have seen it). I’m not sure if she wrote it, but it was published in one of Erma Bombeck’s books. It goes like this:

Most women become mothers by accident, some by choice, a few by social pressures and a couple by habit. This year nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how mothers of handicapped children are chosen?

Somehow I visualize God hovering over earth selecting his instruments for propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger

.

“Armstrong, Beth; son. Patron saint…give her Gerard. He’s used to profanity.”

“Forrest, Marjorie; daughter. Patron saint, Cecelia.”

“Rutledge, Carrie; twins. Patron saint, Matthew.”

Finally He passes a name to an angel and smiles, “Give her a handicapped child.”

The angel is curious. “Why this one God? She’s so happy.”

“Exactly,” smiles God, “Could I give a handicapped child to a mother who does not know laughter? That would be cruel.”

“But has she patience?” asks the angel.

“I don’t want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she’ll handle it.”

“I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I’m going to give her has his own world. She has to make him live in her world and that’s not going to be easy.”

“But, Lord, I don’t think she even believes in you.” God smiles, “No matter, I can fix that. This one is perfect -she has just enough selfishness.” The angel gasps – “selfishness? Is that a virtue?”

God nods. “If she can’t separate herself from the child occasionally, she’ll never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn’t realize it yet, but she is to be envied. She will never take for granted a “spoken word”. She will never consider a “step” ordinary. When her child says “Momma” for the first time, she will be present at a miracle, and will know it!”

“I will permit her to see clearly the things I see…ignorance, cruelty, prejudice….and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life, because she is doing My work as surely as if she is here by My side”.

“And what about her Patron saint?” asks the angel, his pen poised in mid-air.

God smiles, “A mirror will suffice.”

Those words at that moment deeply touched me. I was never the same after reading that.

Enough about me….let’s get back to Ben’s story.

“The angry people are those people who are most afraid.

Dr. Robert Anthony

Anger

Once the finality of Ben’s diagnosis became clear the denial came to an abrupt halt. In its place came some pretty intense anger. “Why did this happen to us?” “What did I do, for which I am now being punished?” As mentioned earlier, I have an unhealthy tendency to internalize many of my feelings. My anger began to manifest itself in extreme selfishness. I wanted my old carefree life back and I was going to figure out how to get it. Prior to Ben’s birth my life consisted of total devotion to work, playing on as many softball teams as time permitted, and having fun with Dennis. That was it. I began to play softball again which was a healthy outlet, but the socialization after the games started to become excessive. There were many nights that I would roll in at close to midnight after our post-game celebrations. All the while Dennis was at home caring for Ben

. I had always

been a workaholic and that too continued. My husband is a saint to have remained patient with me through my “selfish” years; not that those feelings don’t still rear their ugly heads on occasion. But the anger did dissipate over the course of the next few years as I navigated through the grieving process.

“Please God, if you’ll just………”

Most people who have been in a tough situation.

Bargaining

I am going to make another revelation here that I am not exactly proud of. During this period of my life I was on, I guess you could say, a sabbatical from God. It’s kind of ironic, because this was the time that I most needed him, and I was turning my back. However, there was a short period around the time when Ben was two years old, that I

decided to take my case to God and say, “here I am, now please fix this.” I started to “religiously” attend noon services at a church down the street from my office. Surely once he saw that I had found my way back, he would perform some miracle on Ben. “Please, please, please, I promise I’ll become the person you want me to be if you’ll just……”. Guess what, nothing happened. In fact, it just intensified my anger toward him. It wasn’t until several years later that God’s plan for me began to become very obvious.