Friday, March 6, 2009

Good morning, afternoon, whatever it is

Well folks in sleepy land I got three hours of rest last night, and that's IT! Between Jude's seizures, the dogs, etc I got very little sleep... so I am not the best person to be around today. When I got up this morning I wondered how long I could go on little sleep before blowing a gasket. I am not great without sleep, call it a weakness, but I am not.

I lost track on the amount of seizures Jude had last night, but I want to say it was at four or five since 9pm. He had a seizure right before his 9:30 medication time, and he went fast asleep. We did everything we could to wake him to give him the meds. Once I finally got him awake he had yet another seizure, most likely from being disturbed, but we did get the medication down him. Then I was ready to go to sleep, and Jude was wondering why I had placed him back in his bassinet. Luckily, he did end up falling back to sleep. Of course, he woke up later with another seizure. Mike was rather tired last night so during his first seizures he didn't respond much, and this sent me into a seething mad frenzy. I tried to get my emotions under control reminding myself that I was just exhausted.

So my friend Christy brought four big boxes FULL of garage sale stuff over last night. I went through every box, and got everything labeled last night. My dining room is now ridiculous looking, but it's a great feeling to have such wonderful friends. I am sure the sale will be a great success tomorrow.

So I have been talking back and forth with a friend by email regarding special needs children. She is a friend I have made since all this issues have arisen with Jude. She is a very sweet lady who has a daughter with complications of her own. My friend is struggling with the fact that her daughter will never be normal, and I know well how that feels. It's an emotional struggle within yourself of knowing the unconditional love you have for your child, and still wanting a miracle to happen. A bit of resentment mixed with knowing you have a huge blessing. It's hard to explain to someone that has not been in your position. When we are pregnant our dreams and aspirations for our babies never include hospital visits, EEG'S, and speech therapy. These are all items that appear after you are told your child will be the dreaded "mentally handicapped". Short yellow school buses, special needs classrooms, and that special needs look immediately rips through your mind, and you gasp in horror. Then those thoughts turn into hopes of not having wheel chairs, feeding tubes, and trachs inserted when you learn more about your baby's case. Prayers begin to surface that your child will walk, talk, and be one of the fortunate handicapped. A child that will shed light and inspiration to others as they find ways to shine through their disabilities. Then as you hold your precious child you begin to look at them with total acceptance and complete love. You appreciate every breath, and movement your child makes. If Jude gets the slightest grin my heart is very happy. Everyday milestones we take for granted become actions that fill our souls with joy if our children complete them. You realize your life will never be the same, but you don't mind because you are realize you are already witnessing the miracle I mentioned. There is no need to hope for that miracle anymore, because it's right there in front of you because you are watching a child fight to live, and just be. This and only this is what you find comfort, and joy in.

My joy:
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So I sent her this poem. I have posted it on my website before, but I love it. It makes me teary every time I read it, and it is so true. You do have to have a bit of selfishness, a lack of patience at times, and a huge sense of humor.

"Most women become mothers by accident, some by choice,
a few by social pressure and a couple by habit.
This year nearly 100,000 women will become mothers of handicapped children.
Did you ever wonder how these mothers are chosen?
Somehow I visualize God hovering over Earth selecting his instruments for propagation with great care and deliberation.

As he observes, he instructs his angels to take notes in a giant ledger.
"Armstrong, Beth, son. Patron Saint, Matthew.""Forrest, Marjorie, daughter. Patron Saint, Celia.""Rutledge, Carrie, twins. Patron Saint...give her Gerard.He's used to profanity.

"Finally he passes a name to an angel and smiles. "Give her a handicapped child."
The angel is curious. "Why this one, God? She's so happy.""Exactly," smiles God.
"Could I give a handicapped child a mother who knows no laughter? That would be cruel."
"But does she have the patience?" asks the angel."I don't want her to have too much patience, or she'll drown in a sea of self-pity and despair.
Once the shock and resentment wear off she'll handle it.""I watched her today.
She has that sense of self and independence so rare and so necessary in a mother.You see, the child I'm going to give her has a world of it's own. She has to make it live in her world, and that's not going to be easy."
"But Lord, I don't think she even believes in you." God smiles. "No matter, I can fix that.
This one is perfect. She has just enough selfishness."
The angel gasps, "Selfishness? Is that a virtue?"God nods. "If she can't separate herself from the child occasionally, she will never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't know it yet, but she is to be envied. She will never take for granted a spoken word. She will never consider a step ordinary.When her child says momma for the first time, she will be witness to a miracle and know it. I will permit her to see clearly the things I see--ignorance, cruelty, prejudice--and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as she is here by my side.""And what about her Patron Saint?" asks the angel, his pen poised in the air.
God smiles. "A mirror will suffice."

4 comments:

Anonymous said...

I gave that same poem to my daughter - she had her first child November 3, 2008 - a girl - Olivia Marie and my first grandchild. The love for a grandchild is more then I can ever tell you. Olivia has down syndrome we are very fortunate that Olivia does not have any of the health problems that most children with down syndrome have. I have been reading your blog - and I admire so much mothers like yourself and my daughter you are truly an inspiration for all of us.

Debbie
New York

Evie's Story said...

Thank you for commenting on Evie's blog. ITs always interesting to me where her life touches others and who is prompted to pray...thank you! It is obvious you too are acquainted with much heartache for your little Jude. I read a bit of his story and my heart is heavy for you. These wee ones with special needs have become so dear to my heart through our ordeal with Evie and you can be sure Jude is now one of those who has stolen a piece of my heart! Would love to keep up on each other's little miracles.....
pray you get more sleep tonight!

Cjengo said...

Thank you for your comments, and I will keep both of your families in my thoughts. Smile and have a great weekend.

Ellen said...

Hi. I am not one a person who thinks that I was given a special child for a reason, but I am a person who has learned (the hard way) that you should enjoy the delicious child in front of you (and Jude is so yummy!) and try hard not to spend a lot of time worrying about the future.