Having a grieving day

My son is so beautiful that it breaks my heart. It breaks my heart that he’s not walking. It breaks my heart that he isn’t talking. It breaks my heart that he can’t eat. It breaks my heart that he feels broken and there is nothing I can do to fix him.

Most days it isn’t very hard. I don’t have to see him compared to other children his age. But it really gets to me when I see other 1 and half year olds sitting up in their parents shopping cart or walking to the car holding their parents hand. George is a wonderful, adorable little guy with a great personality. But if he didn’t have such a bad chiari malformation he would be saying mommy right now and eating cheerios.

Usually I am able to have a really good outlook, and I would never go moping around, wallowing in the grief of the loss of a normal life for my son, but the past few weeks have been hard. Between the cold and teething, George has had such an awful time. Other children don’t need oxygen to help them breath, they don’t choke every day on the extra saliva from teething, and they don’t need mucus suctioned out of their throat when they have a cold. So I have been feeling extra down.

So if you are another mom out there and you feel so alone and guilty about what your child goes through, know you aren’t alone. We all grieve for our children even when they are right in front of us. We grieve for the dreams we had for them. We grieve for the moments they miss out on due to their disability. It kills me that George won’t enjoy lunch with his friends at school, play little kid soccer, or sing his favorite songs. I know we are still blessed and so many have it worse but some days I just have to be selfish and cry. As long as I don’t burst out in tears at every doctor’s visit or every time I see a child in the store, I think I am doing okay.

False Alarm

Today George woke up miserable. I spent an entire hour walking back and forth to keep him from screaming his tiny whisper scream (paralyzed vocal chords = no real scream). The problem with a kid like George is the more he cries the more congested he gets and the more yet again he cries, it's a vicious cycle. And like any special needs child every sickness leads a hundred different possibilities for the source of the discomfort. Is it a cold, is it his tummy, is it teething, is it his shunt, is his chiari malformation causing pressure on his brain that is making him no longer able to swallow!??!! He has been sick for three weeks now, what could be causing it?

Now I have gotten pretty good at the take the baby to the doctor or not take the baby to the doctor dance. I am proud to say every doctor's visit has had a purpose and half the time a hospital visit. (A very sad thing to be proud of I know but still it is the little things). With a child like George it is important to avoid the hospital/doctors office whenever possible. Especially since a trip to the pediatric wing of the hospital is worse then being at home because you have to wait for a nurse to give your son his medicine, start his feeding pump, change his oxygen etc., etc. When you're a mom who deals with feeding pumps, oxygen, suction machines, and apnea monitors at home being in the pediatric unit is like being treated like a child. So if you don't need a doctors opinion there is no reason to be in the hospital. After all I have a nurse at home, one that knows how to work George's equipment, knows what his little turtle dove noises mean, and isn't helping 6 other patients at the same time.

This morning though something was off. He just wasn't himself. George didn't want to sit, he wanted to be held or to lay on his boppy. He didn't want to be patted or rocked or bounced. He didn't smile or play. He just stared at you and stayed in one place and tried to breath through the snot in his throat. We plugged him into his oximeter and he was sitting at an O2 stat of 76 (for mom's who have no clue what I am talking about he should be above 92 or he is not getting enough oxygen). And then when I put the canula on his face to get him some oxygen and he didn't even fight it? I didn't even bother talking to a nurse, I scheduled a sick appointment immediately. Of course this meant waiting until 240 but I thought it was worth it. Manageable at home but something is off and needs to be checked out so doctor's office, no ER. George finally calmed down and I walked both my dogs. When I came back he was asleep with the nurse and I thought am I overreacting? So I called my husband and spoke with him he said to go. It's rare for him to give me any sort of opinion so I went with it.

When George woke up my desire to see the doctor's was renewed he didn't want to move. He wouldn't shake his head. He didn't want to be patted. I was thinking headache, oh no, shunt revision!!! And like that my mind went a million steps ahead. How to get the nurse home if I have to stay at the hospital. I want the neurosurgeons to shave his whole head this time, how do they expect me to deal with a little strip shaved off? What should I tell my husband to bring me at the hospital? And on and on and on as we packed up and left to make the hour and fifteen minute trek to the hospital.

In the car George fell asleep. When he awoke we were at the doctors. He was in a surprisingly good mood. As usual we were whisked back right away (I'm convinced this is one of the few perks of being in the child with special needs mom club) and we sat in our room with the dinosaur exam table. George starts to play! He is grinning from ear to ear, shaking his head no, sticking his tongue out. We sit him up and he is ready to play. I am flabbergasted! What happened to the miserable, congested, crying baby from home! The doctor comes in and asks what is going on and I list everything that had happened that morning and in the past couple days since our last appt. George continues to be a ham. He fusses for the doctor (apparently having a stethoscope on you is complete torture) and has a reading of 100 on the doctor's oximeter. I have been tricked. Almost to appease me, the doctor gives a prescription for a decongestant and pats my back in understanding of my frustration over the long drive for no reason.

To make things worse I went to the pet store to get food (super expensive so forget it) and then the toy store to get a nightlight (they have one and I have seen better ones at the dollar store). Neither place makes the trip worth it. I basically wasted a whole day for no reason. I can't even get the prescription filled because lo and behold we get home and George is back in a fowl mood, but now the nurse has left for the day. My husband is still at work for an outage now at 920 pm when he went to work at 4am so obviously he wasn't there when I was home around 5. I was stuck. So now I have an extremely upset and congested child with no help and no answers. I guess I should be thankful that it didn't end up in a hospital stay but the guessing is the most frustrating part of parenthood. It will be a celebrated day in this household when my child can actually tell me what is bothering him!

Nurse or No Nurse?

I have always had mixed feelings about having full time private duty nursing. When George was 5 months old we ended up in the hospital because his stridor had become worse due to really bad reflux. We ended up having to do a Nissen and all the nurses/doctors/hospital staff was shocked that I had no help at home. I kept repeating "well I don't work I'm a stay at home mom" to their horrified faces. Finally they got me to agree to have help since my insurance pays for unlimited amount of nursing. I was never fully excited about the idea. He was my son and here would be someone else telling me how to take care of him. Also our house is only 1200 square feet, and there would be someone there with me during the day. It just seemed strange.

I gave in because of all the times I had to take George to dr's appt's and the store and when I was stuck in the house. I knew I was starting to lose my mind with only a baby to talk to. I tried to get the nursing agency to send me just someone for a few hours a day but that wasn't a possibility. It was at least four 8 hour shifts or nothing. My first nurse was extremely unreliable, always late. She made me late for many of George's dr's appts. To the point where when we had a glitch in our approval and I couldn't have nursing for a few weeks, I told Jarrod I don't think I want her back. Our nursing agency sent someone else and she ended up being wonderful. George started doing much better in his therapies and I felt comfortable venturing out into the real world. I got used to the freedom.

Then the Thursday before last I got the call saying my nursing is being dropped because George is stable, I have a nurse until Monday and thats it. I felt like the rug had just been pulled out from under me. I was back in school studying web design in the middle of the semester, I had been volunteering regularly at the animal shelter, I had just started to have a part of my life that wasn't about being a special needs child's mother. The first few days I was devastated. I felt lost, I would have to drop my class and forget about doing next semester. But after a few days with George and a chance to deal with it, I was ready to do this. George and I had a system and I was in complete control of what happened in my home. I would just teach myself the web design stuff since I already was due to my unmotivated lazy teacher (thank you rural community college). I became so okay with the idea that on Friday when I received the call saying "you have nursing back!" I didn't leap for joy like I thought I would. Did I really want nursing back?

I think my biggest issue is with someone there to specifically care for my son I felt disconnected from the process. I wasn't always there to fix booboos and hold him when he was sleepy and delight in his accomplishments. Everything was filtered though my nurse. So I wasn't sure if I wanted her back. I ended up deciding to continue so I could finish my class and help at the shelter for just a little bit longer. I loved my week with George but how long until I start resenting my hubby for not helping more, and resent my child for not letting me have a life. I don't like feeling that way but those feelings always seem to find their way in. But next time approval comes up I will be prepared to lose my nursing again. It wont be the nightmare it seemed to be. I know that one day I wont be blessed with this free skilled care babysitting. I need to spend the next few months finding a way to keep my identity as something other than a mother intact for when that happens so that I can be the best mommy I can. A happy mommy is a good mommy.

George's head circumference

This week we met up with George's neurosurgeon and pediatrician. The news was the same, George's head is not growing as it should. Probably because due to George's spina bifida and chiari malformation at 15 months he is JUST starting to sit on his own and roll. He has not even come close to conquering either movement. The news was devastating to my husband and I. Could our son end up mentally disabled because he can't crawl around and chew on leaves that my dogs brought in on their feet. Surely we can change this.

I will be the first to admit that I had given in to the simplicity of television. George has to eat by feeding tube and therefore needed to sit still 6 hours a day. The easy answer: Television!! and boy did he watch and watch and watch. It started slow. I needed to work on something and realized that George liked SuperWhy (it was available on netflix). I remembered that in college I had somehow ended up on Nickelodeon one hung over morning and saw Backyardigans and loved it. So one day that was on Netflix and of course my brilliant music loving son was entralled! I let him watch one show a day, then 2. Then I was watching my shows and so on and so on until that TV was on all day long. And instead of playing with his toys George would sit there staring at the TV and I let it happen. My nurse would watch TV with him also because as soon as he learned to sign it, it was all he wanted. After finding out about his head, TV needed to stop being such a major part of our day.

How is George ever going to start feeling like he has to move if it is so easy to be entertained. So we are going to limit him to one show a day and I am limiting myself to 2. Already I wonder if I can do it. How am I ever going to keep up with Glee, the Office, 30 Rock, Modern Family, Parenthood etc etc etc. Especially when I have a baby who does not go to sleep until 11pm (that is a whole other issue I don't want to start on). I just need to remember those guilty feelings at those doctors office. YOU are preventing the growth of your child's BRAIN by plopping him infront of the TV to watch singing dancing animals. That should be my mantra. And don't get me wrong as far as children's shows go Backyardigans is the best, for a 3 year old, and once a day. Its extremely imaginative with colors and fun songs. But it shouldn't be all my 15 month old does all day. It should be saved for sick days and one 20 minute movie should be more then enough each regular day.

I can tell my son is already confused by the lack of his favorite show. I have replaced it with time in the pack and play surrounded by soft toys, Pandora radio in the background. And more PT with mommy. He needs more tummy time and sit down practice anyway. Looking back I had noticed his progress slowing down.

As for me I should be fine, life as a mom of a child with special needs is about compromise. Besides I have a house to clean and books to read and dinners to cook. Who has time for all those shows? (there is definitely a part of me having a tantrum right now). Its all about making that head grow!