Welcome to Holland
I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this…
When you're going to have a baby, it's like planning a fabulous vacation trip – to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum, the Michelangelo David, the gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!" you say. "What do you mean, Holland?" I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy.
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to some horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy a new guidebook. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around, and you begin to notice that Holland has windmills, Holland has tulips, Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy, and they're all bragging about what a wonderful time they had there. And for the rest of your life you will say, "Yes, that's where I was supposed to go. That's what I had planned."
The pain of that will never, ever, go away, because the loss of that dream is a very significant loss.
But if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.
Written by Emily Perl Kingsley
Monday, February 22, 2010
For now. I will continue to pray for this baby as he will be in my heart forever, and open to God speaking to me on Baby J but he has to speak to my husband also. As I followed the Ambulance over to Childrens Center in Bethany with all Baby J's stuff I had a Lot of time to think. I thought about how amazing it has been bonding and just loving on this sweet guy. I thought how amazing our God is and how he puts us in certain situations at certain times for a reason. Sometimes we may not know what that reason is tell much later down the road but I will cherish this time I had with this baby. I made him this pillow it came with a comforter I just put his name on it as his one year old birthday gift, but he will not get to have it at his home for now almost all of his personel items were going to the worker for storage because Childrens home doesn't have a place for them. I was also told I could call the social worker and set up 1 hour visits I don't think I'll be doing this I think my season for now is done with this sweet baby. Who knows what God has planned for now I said my good by, and started to cry as I left the center. He is in good hands and has been in good hands I will continue to pray for his miracle!
Wednesday, February 17, 2010
Have you ever taken interest or wanted to learn more about something only to turn to the internet, wow tons of information it is overwhelming, so tonight I'm sad and just praying for a miracle for baby boy. Have you ever heard of short gut/ Well I had not until now and please go on over to read eleanors blog on my list. I cannot believe all these sweet innocent children living with this and how many families it is affect. Babies and Children with disorder live a life that consist's of feeding lines, TBN, central lines, colostomy bags, malnutrition, infections, bacteria the list goes on for obstacles these children and families face on a daily basis. I guess the picture on Eleanor's blog that hit me hard was all these beautiful children walking around with these small backpacks with feeding lines coming out of them. These children are all so precious and baby boy just the same and I'm I guess in a state of shock thinking everytime I go up to the hospital he looks better and better, laughing, babbling, jumping on my legs with his legs giving me kisses saying mama I was thinking hmm I can do this he needs a lot of love and a Ma ma, well I'm feeling very wrong, he needs a very special mama one that probally has no other children that need her, one that can devote everything she has into his health his medical, one that can spend many nights at the hospital the er the doctors offices, this sweet guy is going to need a lot of continued care probally for along time. So I guess I'm lost am I just a Volunteer here for a season in his life to help make him happy play with him, I'm ok with that if that is what it is. I'm not ok with this guy not having that special mama every child should have one! I just keep thinking of the book, a mama for Choco. I have wanted to buy a copy for baby boy but don't want to offend gma who spends a lot of time up at the hospital, who says "she eventually wants him back." Please pray pray for baby J pray for a miracle, a mom and a system that doesn't leave him. Please check out the blog I mentioned over on my side bar.
Tuesday, February 16, 2010
OK the funniest story well at least I think so. Today we were at OT and speech for Aaron and there is another mom there for her son and our sons switch therapist needless to say I have a new friend we have a lot to talk about while our kiddos are in therapy. This mom has an 8 month sweet girl. Well Aaron comes out and is playing with her all sweet and babyish and I said, " Aaron do would you like a baby sister or brother?" He said, "Mom I want this one holding baby girls hands", I started cracking up of course her mom was like no you can't have this one. She is a birth mom and we have been able to have amazing conversations about her situation, long ago and I just admire her strength now raising two Autistic sons. OK now on to sweet baby boy.... What a small world we live in, I had seen Doctor Corbin a couple weeks ago as I was leaving the floor, so I just sent her a quick email about how I recognized her ect. well... she had just been assigned baby boy as her patient. Now I have got to meet this amazing doctor and foster mom who I have before only got to read her blog posts. Anyways I feel privileged to meet this Amazing Woman, who's profession is taking care of these sweet kids and she does it at home too! OK I said this before and now wow, I'm in love..... What part of a sweet voice uttering "ma ma ma ma" can you resist. Baby boy has my heart and I'm being still and waiting on God I have purposefully not even asked my husband meanwhile asked worker to consider me as a placement.... Now that like I said is a long time down the road he will be moving onto Bethany Children's home eventually. I don't even know what his long term issues will be or how much medical he will need and if I'm even equipped or if it is even Gods plan I just know that I love him he is so sweet and so relaxed in my arms, He is the first baby to fall asleep on me when I just started signing to him today. I sing to all my babies but they usually just stare at me. He melted, my hubby's response to that was you didn't hurt his ears did you, LOL I'm just kidding he texts. Enjoy the phone camera shots.
Monday, February 8, 2010
What is a little boy to do with all these little girls around? Ash was with us for the weekend to celebrate, Aaron was so happy he loves this girl! And Kaycee the other cutie is his second cousin who recently moved here from Colorado. Aaron had a great party and is officialy 4 but if you ask him he will tell you 5! So excited I finnished all my tax papper work today so after my visit with baby boy tommrow I will head on over to the cpa and drop it off woo hoo I can't believe I'm so early this year. Now I guess I better get working on my CE for real estate.
Saturday, February 6, 2010
Friday, February 5, 2010
when I got to the hospital Wed. I gave little guy a bath and put this cute little blue outfit on him I got him, he looks really good in blue! Oh it's the cutest thing he gets this one arm going like hes rideing a bull to get his bouncy seat going really fast.
Wednesday, February 3, 2010
Ok knowing there is a reason for everything I will not get upset that my huge post and I mean huge, probally typed more words then ever just erased itself. Maybe just maybe I shouldn't have given so much info out who knows but I'll make this short. Baby boy went back again for yet another surgery I got to be there for him in the recovery room and I was the only one besides nurses and a doctor :( When I got back to his room at 5 after taking a quick trip to cafeteria the DHS worker was there. I really liked her! Baby boys fever gone for today but wheezing now please pray pray for baby boy, pray for my role in this all, I told worker I would want this placement but that is along time down the road and I'm gonna have to wait and see if God works on Randy with this one, hmmmm. I'm so attached and I know I'm just a piece in this huge plan God has for this little guy! Pray that I will be still and know that he is God! At night when I'm tired and weak I hear, are you crazy, you can't do this, and in the morning I hear I can make a difference in this little guys life now I know the voice of God and I need to focus on that one and not let the negativity get to me. I can't believe that in the United States of America we have this sweet little guy laying in a hospital bed not attached to anyone and stares at the tv all day when he is not asleep. Ok I'm getting tired and rambleing I will post new pics tommrow ps. shhhh not suppose to be taking pics.