I am a mom with five amazing boys. Two I am watching become the men they are going to be, which is a process because I don’t think you ever really stop growing as a person, no matter how old you are. One has started his family, and made me a grandma, and I love that. I was blessed with five boys, but let me tell you – all I ever wanted was a daughter. I didn’t get that. I didn’t get to have that bond or experience. Though, I have five – very devoted boys, who love their Momma and would do whatever they could do to help… because that’s what I have taught them. We have given them tools, and love, and understanding that mistakes will be made, bad choices will happen, but it’s what you do to come back from that, and understanding there will be consequences. It’s accepting that, and moving on.
I also, besides my two adult boys, have a teenager and two boys in the single digits, close enough to double digits. We are at that point where besides the typical teenage-itis … it should be a lot more smooth sailing. The kids are independent… and besides feeding them, and making sure they do their homework, follow the rules, and have fun with them … and it IS to that point….
Except…. It’s not.
My 14 year old, Noah, is not a typical child. Nor is my 9 year Nathan. They are not totally independent, and they may never be able to grow to the point where they can be totally independent. We have had to have conversations with our adult boys about what we expect to happen after we get to the point where we cannot take care of them. If that means that we passed away, or just are not physically able to take care of their needs (which I hope is never the case.) They have both made it clear that they will take care of the boys – if or when the time comes. I appreciate that, and I hope they keep their words. I would not want them to the point where they would have to be in some sort of home.
This is something we have to think and talk about. It is our life. It is a real issue that at some point we will have to face.
Tonight, I had a conversation with Kaedyn that I want to share. Kaedyn is our youngest, he is 8 years old. I found out when Nathan was 9 months old that I was pregnant again (and what would be the last successful pregnancy.) They are 16 months apart. Nathan was a bit mobile but otherwise very much dependent when Kaedyn was born. It was very hard for me, initially, to juggle both of them. I had post-partum depression and didn’t realize it, and this was the only baby I had PPD with. I remember one day, I was home alone with the babies, DB was at work, Calahan and Noah were at school, and it was just me and the babies. I was trying to feed Kaedyn (I was still breastfeeding at this point), and Nathan was at my feet, screaming and crying because he just wanted my attention. Kaedyn was constantly at the breast, because he was always hungry. I remember thinking, in that moment, with me nursing Kaed and Nate screaming at my feet, “Now I know why animals eat their young.” For six months I couldn’t seem to put Kaedyn down. The only time he slept was in my arms, or co-sleeping in bed with me and DB. I didn’t realize until he was six months old that I had PPD and by then I had just snapped out of it. It was like a light bulb finally lit up again.
But having Kaedyn was a good thing too, Nathan would push himself to meet his milestones either before or with Kaedyn, but if we hadn’t had Kaedyn, we aren’t sure if Nathan would have pushed himself to do the things he can do. The boys have always been super close. A lot of the time, they slept together. They have always acted like twins, even if they are 16 months apart – complete with their own language – which ended up messing up Kaedyn’s speech development.
But this conversation with Kaedyn tonight really yanked at my heart.
I should explain that I am sick. I have several things wrong, skin issues with my Psoriasis. I have health issues with my Fibro/CFS & diabetes. I have heart problems, complete with a small silent heart attack back in March. I haven’t been doing well. It seems to have gotten worse. I have good days and bad days, and the bad days are starting to out-weigh the good.
So Kaedyn came in the bedroom and we were talking. I had asked something like….
“Are you always going to be with Nathan?”
K: “Yeah”
“Will you take care of him when he’s older?” He gave me this weird look. “Like when Mommy can’t take care of him anymore?”
K: (instant tears) “I don’t want you to die.” (this is clearly a fear of his. So I explained to him the things that I’m struggling with. Although it makes Mommy have a lot of pain, it’s not going to kill me. I didn’t get into the heart stuff, I just don’t want him worrying so much about this. I did tell him I wasn’t going to go anywhere anytime soon.)
After I asked him if when Mommy can’t take care of Nathan – if he would take care of him.
K: “It would be hard” he said. Then he added, “Like with his tube feeding.”
I told him that when he’s older, he could probably do it himself. (That’s if he still has to.)
K: “Well… I think I just might want to live by myself.”
Ha ha ha ha ha….
But the whole him thinking I might die really got of me. It’s a realistic fear but I don’t want him worrying about it.
I have also been watching BORN THIS WAY … if you have never seen it, the second season just finished airing and it has been picked up for a third season. YAY! It’s a show that follows seven young adults with Downs Syndrome.
Downs Syndrome is Trisomy 21. Meaning three 21st Chromosomes in each cell instead of two. Noah has a Trisomy, not 21, but 16. In his case, it’s not a full Trisomy, is Mosaic Trisomy 16. This means that only some cells have the extra chromosome, only some. But we don’t know exactly where or what is affected.
Regardless… There are two boys Sean and Steven who remind me of Noah. He’s like a good combo of the two of them. I ended up just bawling through the whole 10 hours. This season kinda focused on the kids exploring some of their dreams and a lot of talk of them living on their own.
We know, and we’ve been told, that most likely Noah will not be able to live on his own. So seeing these kids expressing their want and need to be independent really struck me. Noah is 14. He just got to the point where he is taking a bath/shower by himself. He can make a few food items on his own (mostly with the microwave.) He only – almost a week and a half ago – was left alone for the second time and did well.
It’s just hard. I have had to learn to live – one day at a time, because I was told when I was pregnant with Noah that he wouldn’t live – period. Once he proved he was going to, I was basically told that – because every organ cannot be tested – you never know what might happen, when things will fail, or which day he will die. So I was told to enjoy every day with him, because anything can go wrong at any time.
When he was five years old, he almost died. Nothing that had to do with his Trisomy, but it happened. Noah was in the hospital – recovering, when Nathan was born. Even though I had taken him into the local ER, I followed my gut and took him into the hospital where he was born, and he saw a doctor who specialized with children with a little more wrong than a cold. By the time she saw him, he was lethargic and I remember she came in and I ran down everything that happened, and she looked at him and looked at me, and she said “Something is wrong” and I felt such relief because she wasn’t being dismissive and she believed me. It’s something I have to fight for a lot – to be heard. Especially early on with Noah. It hasn’t been like that since, with the boys anyway. But that doctor told me that if Noah hadn’t been seen, he would have died within 24 to 48 hours.
I remember having to leave Noah in his hospital room, and going down one floor to have Nathan and him going to the NICU. So it was really hard. I was a basket case in pre-op – crying a lot – and I kept having to say that my son was upstairs admitted.
Regardless, Noah has beat so many odds. SO MANY. He wasn’t supposed to live, and he’s 14. But he doesn’t seem to have any big dreams, or goals… and I think he’s confused on his future right now.
The doctors have finally said, that since he’s survived this long, there shouldn’t be any reason why he can’t live into adulthood and have a future. They still don’t feel he’d ever be able to be completely independent though. I do know there are ways for him to be independent with like people who come and check on them or what not. But at this moment, that’s not in the plans. We’ll see how he feels when he gets older, but he just doesn’t seem interested in that as of this moment. Because he is just now being able to gain some independence and care for himself.
It’s in the future but it is something.
