As Matthew’s mama… I have taken over as his full time caretaker. Yes, I am a mom, and yes that is my job anyhow… but kids like Matthew normally have a nurse to help with everything that entails to take care of a kid like Matthew. We had some bad experiences with our nurses and I ended up just asking to be trained in everything that needs to be done to take care of him. I signed off on all the paperwork and have become his “caretaker”.
Now as a mom, I am would do anything and everything to take care of him. I am “THAT” mom. Doctors ask ME how he is doing. They ask ME how he is feeling. They ask ME if there are in changes. I have all the equipment necessary to take care of him to the best of my or anyone else’s ability. His care is very complex and, as those of you who have been following along our journey for years now, I call him my little science project. Because bottom line, a kidney kid is a little science project. Sprinkle a little phosphorus here, take some potassium from this, add on some sodium and a couple shots of epogen and you got a healthy Matthew. Sometimes we add or subtract some of those ingredients based on weekly labs.
Well, I learned the other week that I am NOT a good candidate to donate to Matthew. Because of some past health issues I had, they pretty much said NO! They said I can still test, but based on prelim application, it would probably be a NO. And the risk is just not worth it.
Back in 2003 I found out that my yearly “female” exam (the ever-so-fun Pap Smear) came back as abnormal. We did more tests and still, abnormal. We found that I had what is called “High-Grade Intraepithelial lesions” on my cervix. (Big word I can’t even pronounce!!) Well, basically the doctor described it as precancerous cells. He said I likely do NOT have cancer, BUT that it can become cancer eventually.
I remember my heart sank when he said that. The doctor said it so nonchalantly too. I thought it was a joke. He said we will have to do a biopsy and something something something and hopefully it won’t develop into anything more. And I remember asking, jokingly, so am I going to die of cancer?! And he says, with his back turned to me as he is walking out, “You have maybe ten years at best.” And then he turned and he smiled and proceeded to walk out. He was an old man doctor… my first ob/gyn I had ever been to. He delivered my first two babies, which were only Two and 9 months at the time. And I just remember this air being blown in my face as he left. I am pretty sure it was the door but it felt so ….. refreshing. Like air being blown back into my lungs. For the first time in my life I thought I was going to die. So easy… I’m going to die.
From that point on I was a mess. I was young and didn’t know anything about anything. I immediately began thinking about my girls growing up without me. My husband marrying someone else. My girls calling someone else mama. I will never see them grow up into teens. I will never see them at prom, or cheering or dancing in high school. I will never see them have a boyfriend. I won’t be there for them when they need boyfriend advice, or best friend advice, or church advice. I won’t be there for them to pick out their makeup, pick out the homecoming dress, or even their wedding dress. I-WAS-DEVASTATED.
Long story short, I had to get a biopsy done and the doctor was able to remove the cells. I remember taking some kind of medications for I don’t know how long. But ever since then I have had to get checked every 6 months. I did get two other abnormal test results in which the same treatment was done. Pre-cancerous cells, but no cancer….
These cells and this treatment on my cervix is the main reason why 3 out of my 6 babies were preemies. My cervix was not strong enough to hold. Granted our twin pregnancy had mostly to do with the two in-utero surgeries… but the cervix was not strong enough.
My first two babies were fine and on time.
Baby #3, I had a miscarriage at 12 weeks.
My 4th baby was hard. She was huge but I only had a few bouts of preterm labor. They called it, braxton-hicks. lol. But she came only 2 weeks early, which was fie with me cux she was a whopping 9.5lbs!! lol
My 5th baby wanted to try to come out at 20 weeks, 24 weeks, 27 weeks and 30 weeks. Finally at 34 weeks she was allowed to exit!!! lol. I was on strict bed rest starting at 24 weeks and hospital bed rest at 30 weeks just to keep her in.
Then by our 6th pregnancy, our twins, they tried coming at 24 weeks, 27 weeks and again at 30 weeks. They were born at 31 weeks on the dot and again.. we think it is because of the surgeries and trauma already caused by our prenatal treatment.
But because of this… because of these pre-cancerous cells, the risk of Matthew getting those cancerous cells is there. It may not be high… but it’s there. And my philosophy with Matthew’s care has always ALWAYS always been .. if we can avoid the risk… let’s avoid it. The risk is not worth it.
So with that being said… I am no longer in the running to give my son a kidney. I am no longer in the position to save my own son. I can no longer be the hero in his life. I can no longer be the one that changes everything… his life… our life… my life…
Mama Can’t Help Him.
I have done so much for this little boy. And I want to do more. I want to be the one that gives him a kidney. I want to be the one that fixes him. I want to be that one person that changes our entire life. And I can’t.
Mama Can’t Help Him.
Mama can’t make it better.
Mama can’t fix it.
Mama can’t change it.
Mama can’t do anything to help him….
I try not to think about it because it just breaks my heart all over again. I need to be the one that fixes him. I need to be the one that makes it all better. I need to be the one that helps him…. and I can’t.
Trusting more and more in God’s Promises and holding on to hope. Holding on to the belief that God already has someone planned to save Matthew. No matter who it is… I pray for them. I pray for their family. I don’t know if this will come from a living or deceased donor. But I pray for them. They get to be the one that saves my baby. And I am so so grateful.