i was reflecting this morning on how life with david is different than it would be if he was a 'typical' five-and-a-half year old. day to day i can honestly say he is a joy and pretty darn easy-going. besides being very small, he needs help eating, dressing, bathing and with most other activities, but he plays happily and loves to explore every room in the house. he is not a picky eater and has made great strides with beginning to feed himself. i change his clothes at lease twice a day because he's drooling a lot. he never used to drool, so i attribute it to teething. he loves his bathes again (yay!) and is very good at splashing me and matty. he doesn't mind car rides and enjoys his teachers at school.
two the most difficult things we are facing are reflux and gas pains. he has struggled with reflux since birth and recently seems more gassy. we often give him maalox and spend a lot of time helping him burp. he takes prevacid for the reflux and his esophagus isn't damaged. i suspect his reflux will be something we deal his entire life.
i notice a lot of people looking at david when we are out and about. most days it doesn't bother me. he's a tiny guy with two fingers on his left hand, so of course they are curious. i feel honored that he is my son. i think he's pretty great and if they got to know him a little, they'd think the same thing.
i guess, i'll never know what it would be like if david were a typical 5 year old. it's okay to think about what might have been--but i don't want to live there. he smiles easily, is fascinated with the world around him, loves to snuggle and makes messes much faster than i can clean them up. all i have is right now, this moment, and i want let it be imperfect and beautiful.
29 comments:
I'm thinking normal is what God intimately created each of us to be. Looking too hard at what we think should be or wish it to be causes us to miss simple small whispers from God over what is. Reality must be acknowledged then pursuing His view must take center stage. David is a gift that was hand picked for you and your husband. I love checking out your site.
Do not let it bother you. He is a beautiful little man, which I am sure you agree. When people stare, just preten like you are celebrities and they have no other choice becasue you all are so darn cool! That is what a friend of mine did when her little boy had to wear a helmet for a while. I know it is no comparison. But people/ humans seem not to know any better. Only you know the jem that you little man is and how wonderful he can be. I am truely inspired by your site, jewlery and all of your posts...Keep up the good work!
You know this is a sweet post. You love your boy for who he is and, yes although you may wonder what could have been you would never wish David to be anything other than who he is. I think normal and typical are such obscure words. All of us are individual and I think that is just that way God meant it. He is your precious gift and you love and appreciate that. You sound like a great Mother and David is lucky to have you!
I can relate to this post on so many levels. I too have a "different child", and sometimes think about the what ifs. I also try not to live there. What good would it do? I don't get the level of intersction with my Crockett that you seem to have with David, or the passed milestones, but the blessings are much the same. Life would be profoundly different without my son, but this is the person he is, and God is using him to grow and develop myself and my family to be the people He wants us to be. Like you I feel deeply honored (most days) to be his mother. When people stare at us in restaurants, my 2 teenage sons joke that it is because THEY are so good looking! lol.
Lisa, my first child was born with a rare disorder and I can so identify with your post. It is so hard but so very rewarding and full of joy at the same time. You have such a beautiful family and your comments about your sweet David are always so inspiring and touching to me. Thank you so much for sharing it.
Thanks Lisa.
Anne
David is your "typical" 5-year old boy, aside from his medical issues he is just like every other little boy -- so sweet!!
You are an amazing inspiration! David is truly a reflection of you and you're husband. God's heart and you're all shine through everytime that little boy smiles. He's so precious and God is defiantly going to do amazing things with His life! Allow those moments to be you're happily ever after! Thank you for opening you're heart and talent to the world! Many Blessings and Love.
Some people never find it, some only pretend, but I just want to live happily ever after every now and then.
-Jimmy Buffet
I was meant to read your blog today. I just recently gave birth to a little boy 3 months ago who had a stroke and was having seizures. So far, he is doing extremely well, but the future scares me. I try to keep myself in the moment with him and appreciate this beautiful time with my new baby. I still have bad days but the bad days are out numbered by the good days. I find strength in meeting other mom's who have a child with a disability/disease. There is something so sweet and innocent about these children. They capture your heart the moment you meet them and it is thiers to keep forever.
BOTH of your children are beautiful! I know people can be hurtful and rude with remarks....and their staring. Obviously some people were never raised with any manners! David is remarkable in his own way, and he is truly a gift from God.
I hope that one day if I have children, that they are as loving and snuggly as David! =)
he's a very special little dude.
God bless the caretakers of these very special spirits.
I would love a special needs a child. I just love their sweetness so much...there is nothing more pure in this whole world.
Whenever I see a special needs out in public, I really try hard to not stare, but I just can't help it, I want to soak them all in. I just want to look at them for a short moment so that I can have a reason to smile.
I am sure it is hard for the family members who have to deal with the gauking, but just know, that at least from this person it is admiration and not judegment at all!
I just want to love them..I sometimes the parents would be more happy to introduce them to others because I would love to hear the stories of each and every child! (and adult)
But, for now, I will make another note to myself to try and not make people feel uncomfortable with my looking in!
I read this amazing book about a woman who talks about the journey she took with having a child who was Downs....it is a popular quote..I need to find it...she talks about planning her whole trip to Holland while pregnant, preparing and planning for every little thing...until her child was born...and she woke up in France.
France was just as good if not better than Holland, but she still would have to overcome not going to Holland...sure you relate to that..and from what I've read, you have done a great job at embracing both your kids.
God bless you again. I am in awe from your parenting and your ability to love inspires me to be a beter mom!
P.S. Those little blue crocs are to die for!
I truly believe that after people associate with our special kids, they leave a better person. I know that I am because of my son. He too needs dressing, bathing, eating--G-tube help. But my life wouldn't be the same without him, he is my ray of sunshine everyday.
God has blessed us all, indeed, who have special needs children. I could never have grown the way I have without my daughter's help. And I'm sure you feel the same about David. Isn't it miraculous?
Life is so different since Ben was born, much different from the life I had planned. But we are so blessed by his presence in our lives, and I do believe that having him has made our family stronger.
I am so glad to hear about all the progress that David is making. Hopefully one day our little guy will do all those things too.
:)
Ben's reflux has not been an issue since his Nissen fundoplication, but he does get gas pains fairly often. We help him "burp" though his g-tube.
"all i have is right now, this moment" this could not be more true for every single one of us and it is something that your posts help me remember. thank you and thanks to david for that.
God bless you and your family Lisa. You are amazing. I want to encourage you to continue to let God make all things good through you and your love for sweet David. We all adore him! See ya soon!
You have taught me so much in the way you love David. And he has taught me so much in the way he loves others.
Ditto! I perfectly understand you well for not being able to image what your life would be like if David is a like other 5 years old son. The matter is that he is a GREAT teacher for all of us! I felt the same with my younger son, too.
David is a gift from God.
de-lurking.
thanks for sharing from your heart about this...
i think your work and life is beautiful.
Hi Lisa, I love your beautiful blog and just had to comment. First I must say, I believe that God does not make mistakes. Then I whant to tell you that we have a patient where I work, a lady in her late 40's that has what I would call a little arm and hand. She is so very "normanl" in every other way, and I know I stare. I stare because it is so beautiful looking, small and delicate, covered with the most fine little blond hairs. It truly is beautiful to look at and watch her use it. It has been on the tip of my tounge so many times to say these words to her, but I don't know how she would react. So I just stare and try not to be too obvious.
A commenter above mentioned something that sounded like "Welcome to Holland", a poem that is absolutely beautiful. I always enjoy your posts Lisa, and I have wondered before if you have ever read this poem, thinking surely maybe you have. After I had my 2nd child, this poem meant the world to me and I grabbed onto it and held it close to my heart for many months. It is still so special to me.
WELCOME TO HOLLAND
by Emily Perl Kingsley.
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 guide books 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 a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. 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....and 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."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very 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.
c1987 by Emily Perl Kingsley. All rights reserved.
I identified with so many things said in this above... it portrayed my feelings exactly at that time, and I loved that someone had put into words what I was feeling.
You are a beautiful mother Lisa, and it is obvious you ARE enjoying the very, very special, very lovely, unique and precious things about your own "Holland".
Thank you for sharing so genuinely with us. God bless you and your husband as you are parenting both your boys with HIS love, joy and gentleness.
lisa - you rock!
Lisa have you tried Peppermint for his gas. I recently had some gas issues and bloating related to a diet that I am on. Someone suggested Peppermint Oil. I got it at a health food story in liguid form. It also makes your breath smell good. It is worth a try. David seems like a great kid. God gave you David for a special reason. Only God knows why. I love checking your site. Keep Posting!!
amen...keep on enjoying those beautiful moments with your cherubs! blessings to you, Kari
That was beautiful!
What a sweet post. You can just see David "shining" through it!
Much love,
~Cheryl
What a BEAUTIFUL son you have!
Post a Comment