Poor little guy spent a night in the hospital to get his oxygen levels back up. He struggles with simple respiratory illnesses -- but the oxygen and breathing treatments helped him immensely.

Unfortunately everyone else in the house has the same thing -- coughing, hacking and miserable!

Jude is Sick

Poor little guy is sick. He has such a problem with coughing and secretions -- not to the point of needing to be constantly suctioned but enough for him to be miserable. I can tell he feels bad as he is not rolling all over the floor like he usually does and only has the weakest of smiles for everyone.

What will I do?

I read an article in St. Anthony's Messenger about a seventy year old couple caring for their 50 year old disabled child. When Jude is 50, I will be 91 and probably unable to care for him. What will we do? Will one of his siblings have to care for him or will he be able to care for himself? What does the future hold?

He can be so delightful, so charming, so patient. But he also can't sit up, can't crawl (though he can motivate himself around the room and roll over). The medications he takes makes his head control even iffier than it was before. He is able to swallow rice size pieces of food and eats enough to avoid malnutrition -- though I can't see him as even close to chubby. I want to break out in tears every time I see a child younger than him able to stand, sit, crawl or walk. I want to strangle the girl next to me in close when she complains that her one year old is so "bad." Be thankful that she can be!

Control

I guess what is bothering me the most is that I have no control over the situation. I cannot make Jude better through force of will. I have to accept things that I don't like, I have to accept that I can't change things I don't like and, worst of all, I can't walk away from things I just don't like. I would never walk away from my child -- but somedays I would love it if these problems weren't mine.

Helpless

I suppose the worst thing I have to deal with is a sinking feeling of helplessness I get from time to time. I can't work my way out of this. I can't give up, but what I do may never work. That is so frustrating. I was very excited when John McCain picked Sarah Palin because she has her own special needs child -- but she isn't at the point yet where the work really begins, where you really see the differences, where you really and truly have to accept that your child isn't "perfect." I love Jude, I truly do, but some days are just too much. Today has been a good day as he napped, ate, played, had PT and is asleep again -- not all days are so easy.

Struggling

Jude's asleep, again. He is taking Keppra and Klonopin to control his myclonic epilepsy (not really working, BTW). It makes him so very tired! He slept almost the entire time we were out shopping this morning (made it easier but still...) and he came home, ate lunch and went back to sleep. How is he going to learn to do things with this much sleep? I'm so afraid he'll slip farther behind or regress with all this medication.

Now I know

Now I know lots of things I never wanted to know. I know how it feels to watch other children walking when yours can't crawl. I know what it is like to have other babies talking when yours just babbles. I also know how valuable being able to hold your own bottle can be -- I still spend hours feeding Jude, just like when he was a newborn. At least he smiles -- at least he tries to talk -- at least he engages with people, I cannot even imagine what mother's go through when their children cannot do even these things. At least Jude is healthy -- I can't imagine what a mother must suffer when her child has critical health problems. Sometimes I feel so sad and depressed, something I've also never felt in my life. I can't know what the future holds but I can't see that it looks good for him, or for me.

If wishes were fishes

Sometimes when Jude is asleep I can imagine that he is a normal little boy worn out after a day of playing. Anything is possible when he is asleep and all is "normal."

College

Jude's big brother is off to college. It doesn't seem so very long ago that he was still a baby. Jude, unfortunately, has no real love for his big brother -- he is viewed as a very substandard substitute for mom! I'll miss him though. Not only has he been a huge help since Jude was born, he is good company -- funny and intelligent and amiable. He sometimes has a very short temper for the little ones but, in general, is a good, loving and protective big brother.

Jude loves books.

Jude loves to have books read to him. He is so attentive and seems to really enjoy looking at the pictures and hearing the words. He can't manipulate them himself, yet -- but enjoys just sitting on my lap and hearing them. This is good -- it is something that we can all do with him.

Jude's sick

He's done very well and hasn't been sick for months but now he has strep. ARGH! He's handling it pretty well, but its more medicine for the next ten days.

Happy Birthday!

Jude had his birthday. I was happy for the little guy and sad at the same time. He enjoyed the cake, the attention and the tissue paper but I felt sad having to help him get his hand to his mouth to eat some frosting. I see much younger babies all the time able to hold toys and sit up -- and it hurts to know that he can't. And I do realize a large part of it is feeling very, very sorry for myself more than him. I really, really, really want a "normal" baby -- I so want to wake up and realize that none of this ever happened and Jude is just fine. While I have met many wonderful people in this journey -- I could have lived my life just fine never knowing them. People always say they are grateful for this or that hardship in life, I'm not grateful! Why should I be grateful for the fact that my child has to struggle to do the simplest thing?

One diagnosis

Jude finally has an "official" diagnosis -- but not of CP. It is for Myoclonic Epilepsy, central hypotonia, and developmental delay. The neurologist said a diagnosis of CP might come later when the mycolonic epilepsy is under control (it isn't like it is an out-of-control thing right now) but the epilepsy could be causing some of his developmental problems. I guess we'll see.

Birthday Coming Up

And I dread it. It sounds horrible but I don't want his 1st Birthday to come. There are so many things he can't do and a marker for all of that is coming up. It's like turning thirty-five and you are AMA, you turn 1 and all sorts of labels will start popping up, globally delayed, official diagnosis of CP, therapies, arghh......While he was a baby, it was OK, but he is moving into toddler age and not able to toddle.

Every day's a new day

Every day is new and every day is different. Some days, Jude does so well I can imagine a future with him on the soccer fields with his brothers and sisters -- other days I imagine him trapped on the sidelines in a wheel chair. It isn't that sports are that important to us as a family, but the ability to do things together is. Will it be fair to Jude to do things he can't -- or will it be fair to the other kids to limit family activities to just the things Jude can participate in? I hope it doesn't come to that.

Jude loves Josie (but not vice versa)

Poor Jude. He loves his sister, Josie, so much and she could simply care less! I can't fault her too much, she is only two. He loves to watch her run around, smiles when she is near, and is just delighted by her very existence. Not so different from his other siblings, where the younger adored the older and the older just wanted to be left alone. One of my children managed to ignore his brother for almost 2 years after his birth by simply refusing to acknowledge his existence. Josie has just recently started showing things to "baby" -- but not that much. The only time Jude has really sat up for awhile was when he was watching Josie. And who said love couldn't produce miracles?

Jude's birth

Jude was born just after midnight. I was induced the day before because of gestational diabetes -- he was 38 plus weeks and plenty old enough to be born. He hadn't had bad NSTs, he was just difficult keeping on the monitor, so everyone was tired of doing them twice a week with a nurse sitting there and following Jude around the womb to get a good strip. I was started on pitocin and not much happened, for hours. At 6pm my water broke and things got going. I asked for an epidural, I knew I would need it though I had gone natural for 4 previous births, and it was in by about 8 pm. I started pushing about 9:30pm. Nothing was happening. The 5 deliveries before Jude, baby was out within half an hour -- by midnight, I had been pushing 2 1/2 hours with no success and the OB said that if nothing changed, I would be prepped for a c-section in 30 minutes. Then Jude's heartrate started to fall and then I could hear it stop. It went from thump, thump, thump, thump to thump.....thump..........thump...........thump............thump........... It was the most terrifying silence in the world. At the same time, I was getting very fuzzy myself. I climbed onto the gurney, was rushed down the hall with the anesthesiologist pumping more meds into my epidural, and got onto the operating table -- they were cutting me open before the curtain was up because I remember seeing my midwife using the tool that helps to spread the incision -- then I was out. I don't remember seeing Jude coming out. The next thing I remember is the OB coming to my side of table and telling me that I had to have a hysterectomy, my uterus had ruptured and couldn't be repaired. I was out again and woke up trying to look for Jude. I saw that there was a crowd around the "infant area" in the operating room, but no crying -- no sound at all. Then another group came in and I was told they were taking him to the High Risk Nursery in the neighboring hospital. Then more surgery, more transfusions, waiting for a consult, and closing me up. I was so very cold. I shivered under a warming blanket for an hour until my body temperature came back up to normal. My midwife came in shortly after I was put in a room, exhausted and in tears. My husband came back from the other hospital, saying that Jude was stable. I honestly didn't believe that he was alive.

Sense of Doom

The week before Jude was born, I knew that something was going to go terribly, terribly wrong. I was convinced that we were both going to die and in some primitive way -- my body, my mind, something in me sensed that this was true. Before the advent of modern medicine (something my primitive mind wouldn't even comprehend), we would both be dead. I would have died in childbirth along with my child. Now, there are fetal monitors, there are c-sections -- there are numerous ways that both of us lived -- but at the time I had the overwhelming sense of doom. I wanted my husband to drive me to the ocean to see it one last time. I wanted to have a beautiful afternoon with my children. I wanted reassurance that it would be OK. In a way, it was -- we both lived. In a way, I still need that reassurance.

"Your Baby At 11 Months" or not

I have to stop ready "Your baby at 11 months." It just is not helpful! Jude can't do any of those things -- I might feel OK looking at "Your baby at 4 months." Poor guy, he still isn't sitting well, crawling, standing, etc -- all his brothers and sisters were crawling and almost walking at this age. I feel lucky he won't have a younger brother or sister that will pass him developmentally, since he'll always be the baby, it will always feel normal that he won't catch up with them quite so fast. He is still beautiful, he is still wonderful but he isn't what I expected.

The start of Jude's life

How did all this start? Of course, it started with finding out I was pregnant with Jude. I have to admit -- I wasn't happy. My baby at the time, Josie, was only 10 months old and I got pregnant with her when my baby, Tom, was only 10 months old. I really wasn't ready for it again. It took me a week to adjust well enough to the news to tell my husband. I did get over my shock and apprehension quickly enough -- I found out after Thanksgiving and by Christmas I was happy to be having another baby. Do I feel guilty about those feelings now -- no. Not an ounce of guilt about it. I suppose if I felt Jude was "unwanted" up until the moment of delivery, I might feel guilty about what I was feeling. By the time I delivered, Jude was a very much wanted and anticipated by his entire family.

First Day to Blog

First off, I am the mother of 7. This is important because no matter how manner children you've raised, it doesn't prepare you for having a child with disabilities. As a matter of fact -- I think I'm even more at a loss because I think I should know what to do, I think I should know how babies should be, what they should be doing, eating, acting, playing....and Jude has changed everything I thought I knew about parenting. Not only does it change how I relate to him, it changes how I relate to the others, how I organize time -- what I can do. I've had six easy babies, some cried more than others, but, in general, easy, easy babies. Then, at the end of my childbearing years, I got a big surprise. A beautiful, loving, sweet surprise, but a child that I can't predict and who I feel I'm in completely uncharted waters with. I've gone through some rough times in the past 11 months. Times I'm loathe to share with anyone because most people think I handle it all so well -- and who wants to dispell the notion that they are superwoman?