Wednesday, January 6, 2010

Some changes

Jude is still coughing up a storm, and his seizures have greatly increased. He is still eating which is great, but he seems to eat later in the day. Mike has kept his frustration with Jude's eating at bay, and even told me yesterday he was confident Jude would take more at night, and he did. From 4pm until 11pm, he can take up to 15 ounces. We just seems to adjust our life around what Jude needs, and wants.

Per my blog yesterday Mike's frustration level has at times reached it's peak. He is doing great with Jude's feeds this week, but it's Jude being sick that's bothering him now. He feels trapped in the house, and I think he feels he has nowhere else to go. In addition to that he says he feels like such a failure when Jude gets sick because he feels he isn't doing his job properly. I try to tell him not to take things so personally, but it's hard for him to listen. So therefore, I am trying to find someone to come in on Tuesdays and Thursdays for four hours to relieve him a bit. Our respite pays, and his mother comes whenever she can, but this will be on top of her help. She is limited on what she can do because of her vision, but is so wonderful with Jude when she is there. If we had someone else there 8 hours a week Mike could get a few things done with confidence that Jude is being watched, and that if Emily gets home she is not alone.

So I was reading a blog yesterday of a fellow special needs mom, and I so related to her post. I actually posted a blog just like hers around Christmas. She had found a box of old baby toys, and it made her sad her son cannot use them. I was walking down the toy aisle picking out gifts for family members, and I kept staring at the baby toys. The toys Jude cannot use. So I began to think about how things change when you have a special needs child. They are bad things, but you do continue to mourn the loss of the child you thought you were going to give birth to.

So what changes?

1. You no longer look for toys that you know every child wants for Christmas. You look for toys that will help your child in therapy, or help stimulate them in some way. In addition you aren't really sure they will ever use that toy, but it makes you feel better buying it for them.

2. You look for clothes that are cute, but are easy to work with. In our house onsie's are still the greatest creation ever.

3. Instead of buying sippy cups we continue to buy bottles, and a normal feeding can take an hour and a half.

4. When it's time for family photo's you have to contemplate what you are going to use in the picture to keep your child's head up. You don't want them slouching over in the picture, so it just requires extra thought.

5. Stopping and running into a store rarely happens because that requires getting the wheelchair out.

6. Going to a baby shower, or a party and hearing mothers harp on organic food, nursing, etc almost because comical, because you would be happy with ANYTHING your child would eat. Also, listening to them rant on their soapbox about other issues is comical because you are just hoping your child isn't in the hospital next week. You learn quickly that it's the simple things in life that matter, and to let a lot go.

7. You learn to let people's complaints about life roll off your back because you know how difficult life can really get

8. Most special needs children like to be held all the time, so you learn to let the laundry go, the dishes go, they will be there tomorrow.

9. A normal diaper bag turns into a rolling pharmacy when you go out.

10. You learn to adapt (not get used to, but adapt) to seizures, and you can tell certain things about your child's health based on the seizures.

11. You become "friends" with the nurses at your local children's hospital

12. You become very vocal about your child's medical care, and aren't afraid to express when you are upset with a physician, or when you are very happy with one.

13. You learn the definition of certain illnesses, and medications that you would prefer to not know the defintion of. You learn their risks, blood counts regarding medications, and how they should be administered. You do things for your child that would have grossed you out before, but hey it has to be done!

14. You learn the meaning of more acronyms for medical assistance, and agencies than you ever wished to know.

15. You pass by the underwear section in your local department store, and you wonder if your child will ever be potty trained.

16. You re-think your retirement because you have a child that will always need your assistance, and you make necessary arrangements in case something should happen to you personally. Goodness knows I have more life insurance than most of my friends just to make sure my sister can always care for Jude in the best possible manner. Although, Emily is saying she will fight for Jude no matter what.

17. You look at your other child, and you constantly wonder how this has affected their life, and if they feel overlooked.

18. When going out you get used to hearing "Oh he is so sleepy, poor thing". No he just cannot keep his head up! grrr

19. You look at other special needs children in a way you never did before, and you appreciate all they can do.

20. Your heart goes out in a way you cannot even explain to any parent dealing with a serious illness, a special need, or a difficult time.

There is a lot more, but that's off the top of my head. This situations have definitely made Mike, and I stronger people, but they are again difficult. It's okay to say that our life is hard, but we do keep marching a long, and our life isn't nearly as difficult as some other parents I know. If you are a special needs mom, feel free to add what has changed in your life, for the better, or the not so great.

On a great note we are getting 50 boxes ready with Emily's Smile Boxes to go to Scottish Rite.

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Debbie said...


I can relate to everyone of those situations on your list...

#18 though...I get ALL the time...I thought I was the only one...

because with mito and the whole energy thing, and the floppy head to boot...the check out clerk, the passer-by-er in the stores, etc. ALWAYS comment on how sleepy he is... "oh, it must be nap time!"

They don't know any different ...but WHY does it irritate me!?!

I just give a half smile, and hurry on my way!

Vicki said...

How true is all I can say. Bad day today. Hospital's suck.

Candace said...

OHHHH, Jenn! I am totally there, you know! I used to think...My child will never eat candy or junk I think, I would feed her gold bricks if she would just eat them!

~Amy Rose said... and Jude have made me look at things and appreciate so many small things that I did not stop and appreciate before. I am sure you have touched so many others in the same way. I listen to friends complain about silly little things regarding their kids and see strangers in the stores treating their kids in a way that makes me sooo angry and I think of you....and Jude. I want to SCREAM at them to realize the blessings they have....and how things could really be. Jude is blessed to have you and Mike as parents! I wish I still stayed home....I would come and help you out in a heartbeat! But I know God will provide for are going to be bombarded with help. I just know it! Little Jude is in my prayers to get well...and to keep getting stronger!

Katy said...

Charlie does pretty well with his head and they still give me the sleepy thing. It's his tone. One day I'm going to snap and say, "actually, he's disabled." I'm sure the looks I get will be classic.

I also HATE it when people talk to Charlie. He can't talk and maybe I'm strange, but I don't just talk to other people's children when I'm out. SO annoying.

Katy said...

Oh, I could add a good one to this list: If your child ever outgrows a toy, it's the best day ever. EVER.

mom2nji said...

While Noah's life is not in danger from Autism. I agree with everything you said. You are guys are doing great. You are an awesome wife for knowing that Mike needs a break. I dont think Jude (or Em) could have better parents.

Mommy Melee said...

Such important perspective, thank you.


Bronx Cataldo's said...

Well said Jen. Very powerful.

We get "oh He is sleeping, does he sleep good at night?"
Or " he's a bit big for naps!"
Most of the time he is awake but being that he has vision issues he sometimes doesn't keep his eyes opened.
I just say "oh he is blind" you should see their jaws drop.

emily said...

Great post! I also get any time that we walk into a restarant, "do you want a highchair?" "no, thank you, we will just hold him." and then proceed to be asked another 100 times if we would like a high chair!!

Also, the cutting teeth comments due to drool.

Just found your blog- we are in Arlington. :)