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I am the Momma of 8 children. Seven here on earth and 1 precious little Angel in Heaven. My children range in age from 2 months to 25 years. My 6 year old was born with a laundry list of complex medical conditions. He has Trisomy 21 (Down Syndrome), a rare brain malformation, which resulted from a mutation of the PAX-6 gene, bilateral anophthalmia, which means that he was born without any eyes, so he is totally blind. At the age of 2 1/2 months old he had to have a tracheostomy to help aid in his breathing. He is hearing impaired, with normal hearing in his left ear and has profound deafness in his right. At 3 1/2 years he had surgery to have a Mic-Key button placed in his stomach (feeding Tube), which is mainly used to give him his medications. He also has insulin dependant diabetes and wears an insulin pump, which gives him a continuous dose of insulin. Even with his many dis"abilities," including being globally developmentally delayed, he has accomplished more than anyone would have ever believed that he could. Join us in our journey living with a Dis"Abled" child....

Friday, August 21, 2009

One Small Pearl

The odds of finding one small pearl in an oyster is 1 in 12,000. The odds of finding the rare purple pearl in a Quahog clam are 1 in 100,000. But if you happen to be lucky enough to find one of these pearls, you are so excited. You start planning what you will do with the pearl. Give it away to a special friend or family member, keep it and have it set in a ring or necklace or maybe sell it and use the money to pay off some bills, buy yourself something nice or save the money for a later date. You take the pearl to a jeweler to have it appraised. When the jeweler tells you that the pearl isn't worth very much, you are saddened. All of your excitement and dreams have suddenly been shattered. You quickly get over your disappointment and go on with you life as it was before you found the small pearl.

Like finding the small pearl, there are circumstances which occur in our lives which we can just put behind us and move on. There are other situations in our lives from which we learn from our mistakes and try hard not to repeat the same mistakes twice. And there are still other circumstances that occur in our lives, if given a chance we would choose not to change one single thing.

Being the mom of a child with complex special needs, is one of those situations in my life in which I wouold not change a thing, if given the opportunity to do so. I feel so blessed and honored to have been chosen to be Timmy's mom. Timmy has taught me so many of life's lessons in his 5 years with us. Life lessons that all humans should learn and that by doing so would make the world a much better place for us all.

Timmy has taught me the true meaning of Unconditional love. Without one spoken word or physical contact, with just a smile and a giggle, Timmy is able to tell us just how much he appreciates the love and care we give him. And he is able to tell us just how much he loves and adores us. Upon entering his room the first thing in the morning and speaking to Timmy. He gives us this heart melting smile and a giggle that makes us forget "why" we are feeling so depressed and that makes us forget our complaints about the world. For a few precious moments, we cuddle. It is just parent and child exchanging of feelings, thoughts, dreams and unconditional love, without a spoken word, only through smiles, giggles and body language.

He has taught me patience. With a set routine, hard work, patience, and loving guidance, that once the smallest of milestones are reached, the joy, excitement and elation are far more appreciated, than those moments when a "typical" child reaches the same milestones.

He has taught me that it is ok to cry when faced with adversity as long as you don't linger too long in self pity. To seek out help and receive help when offered. To find the strength within myself to stnad up to the ignorance of others in this world. To have the courage to educate those people who are ignorant, not to accept their ignorance toward the disabled as the "norm" of people in this world. My belief is; Through education, we can change the world one person at a time.

He has taught me bravery. To be strong, to stand up and fight for what I believe in and for what I want. Not to accept "NO" as an answer. That if one door shuts another door will open. Just because a hundred doctors may feel that they can't offer you any medical help. This is a large world and there is at least one doctor who will be willing to open his/her heart to help. Be willing to seek and explore ALL possibilities, don't be afraid to ask questions and ask the same questions more than once until you are satisfied with the answers. And don't be afraid to ask for guidance and help in seeking out info, services, or medical treatment.

He has taught me that it is ok to dream, as long as I don't get caught up in the "what ifs?" and "why me?" of life. That in life it is no longer what "I" want, but what is best for "us." That as a mom I most of the time have to settle for second best, so that Timmy can have "the best" of thing in life. I'm thankful for Timmy's happiness and health and no longer focus on the things that Timmy "can't" do, but rather on the things that we have been blessed with that Timmy "can" do. I have learned to open my eyes, ears and heart to others, offering help and support. I have also learned that not everyday will be bitter sweet. That there WILL be days that our lives are in total chaos and WILL be turned upside down by disappointment. But the best that we can do is not to get caught up in the self pity. Rather focus on tomorrow and create a game plan with will help to overcome the disappointment and solve the issue(s) at hand.

He has taught me to live for the moment. To put the daily stresses of life behind me. To be thankful for what I have and not to spend time dwelling or wishing for those thing that I don't have. Spend time together creating memories, rather than rushing about running errands, cleaning house or paying bills. No one knows how much time we have with our special children, so make the best of each moment like it may be your last.

He has taught me simplicity. Material goods and money aren't what is important. Cuddling, singing silly songs, reading/telling stories, a walk along the beach or in a park taking in the sights and sounds together. Playing simple fun games like Peek-A-Boo or Pat-A-Cake. Laughing and smiling together. Through these simple pleasures we are teaching Timmy and learning so much more about him. The simpliest of pleasures in life money can't buy, but are the ones that all children LOVE the most.

And most importantly Timmy has taught me empathy. That if I listen with my heart I will be able to fully understand his needs and desires, through his body language, smiles, giggles, laughter and vocalizations. By listening with my heart, I will be more aware of, sensitive to, and vicariously experiencing his feelings, thoughts, and experiences without having his feelings, thoughts, and experiences fully communicated via a single spoken word.

I'm not saying that everyday with Timmy is hunky dory or peachy keen. There are days in which I'm stressed to the max, exhausted from lack of sleep, depressed and feel as though I can't go on, and days that I'm angry at myself and the world. But the rewards of being Timmy's mom out weigh the negative days one hundred fold.

Even though Timmy is unable to walk, talk, play, or learn at the same pace as a "typical" child Doesn't change the fact that he is a happy, healthy child with feelings and thoughts of his own. I don't see Timmy as a disabled child, but rather I see Timmy as a child with ABILITIES who is faced with challenges.

All that Timmy has taught me and the joy that he has brought into our lives, ABSOLUTELY NO WAY would I ever consider changing a thing! Timmy is my sunshine on a cloudy day. My cup of coffee in the morning with an extra dose of caffine. His smiles and giggles give me the strength to face the day. My breathe of fresh air, when the day seems unbearable. My ray of hope when I'm feeling down and things aren't going my way. He's my inspiration. He's my HERO!!!!!!


Michelle said...

And you are his hero because you don't give up. Way to go!

Melanie said...

WOW. I just found your blog and what you wrote is so beautiful.
you are amazing (not because your the mom of a special needs child) but because you can tell that you have a heart of gold.

I am truly touched by what you wrote, and I hope to share some of the same experience with my son.

Anonymous said...

I love this entry. I can totally relate with you. I feel like Abby is a blessing, even though there are days when I wonder how I will make it! We have a long way to go, and have only experienced just a little bit of everything you have experienced. Thank you for sharing this on your blog. :)
Would you mind if I add your blog to my blogroll?


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