Patience?! You would think that with 3 kids I would have the patience of Mother Theresa. Not so much. I want things when I want them and especially when it comes to my kids. If something is not right, you can bet you will hear from me. Do I jump the gun at times...probably...ok, definitely yes! Do I regret that haste...never, when it comes to my kids, I hold true to the decision I made and never look back. I am very impulsive, but with age comes wisdom or so the old and wise say- maybe I shall get there one day. I have learned when to "hold em, when to fold em" and at times "when to walk away". Other times...I draw a line in the sand and hold my position! Never to be detoured, never to falter.
Life ISN'T about waiting for the storm to pass... It's about learning to dance in the rain...!My gosh- that line has never meant so much to me- than right now. I have a storm...one that is not passing fast enough!
Summer time is a joyous season at the Guire house. We love time swimming, the heat, the lazy summer days, the vitamin D in large doses and the vacations. In addition, we celebrate several birthdays in our family...my mom's, Tristan and Teagan's, in June, July, and August. Birthdays are amazing! My parents always made us feel special on our birthday as kids. My older sister and I have birthdays within a week of one another, but we always had our own day, our own cake and our own gifts. Of course I love birthdays, hell my birthday in December has been renamed to Jessmas for a reason. I spent 28 days celebrating. I give my sister and Danny their day (the 16th), my anniversary (the 23rd) and Jesus gets his own day too!
Many mothers say stop the clock around birthday time..."I want them to stay this age forever." Not me! Don't get me wrong, I loved holding my babies when they were infants, love playing silly games as toddlers and love the drama of the preteen years- well kinda. I look back day to day and say "well that was fun, what's next". Each day that my kids grow is a celebration...we will never be where we were and will always be moving forward. That's the amazing thing about time, you can't hold it back, you must continue forward. This is what makes time so special- you never get it back- so enjoy each moment! Never to be detoured, never to falter.
Life ISN'T about waiting for the storm to pass... It's about learning to dance in the rain...!
Taylor Reese turned 10 this year. Double digits- very exciting! She even celebrated this birthday with a very special friend who was celebrating her 10th birthday too! And as she has reminded me since she was 6...only 10 more years, only 9 more year, only 8 more years..."until I get a car". Oh MY! Now, Tristan Daniel turned 4 this year on July 19th. He was very excited for his special day to come. However, he was disappointed the morning he woke up and realized it was his birthday. "But I am not bigger". Poor lil guy. His main wish right now besides avoiding a nap, is to be BIG like Dada! One day sweet Tristan Daniel...one day! In just 2 weeks give or take a few days, Teagan Rey will be THREE. Finally!! You wonder why I say finally...because in Teagan's short life, I have felt as though we have been fighting a battle for decades! With as much as this child has been though- he should be at least 15 by now. Never to be detoured, never to falter.
Life ISN'T about waiting for the storm to pass... It's about learning to dance in the rain...!
Have you ever been snuggling with your little one at night and get a feeling by his warm body that he might be getting a fever...YIKES. You feel his head, you ask him if he feel ok, and you check on him hourly to see if your suspicious are right. The next morning you wake to a very hot headed little kid who indeed has a fever and maybe another symptom or two. They are sick UGGGG!!!! In just 12 short hours your child has gone from happy, pleasant, and playful to tired, whining and listless. Those hours moved quickly. You look back now and probably do not remember the last time they had a fever.
Now imagine getting that "feverish" feeling and wondering for weeks, months, a year if they will get "sick". Imagine not knowing what the next day will bring. Will they be happy and playing as usual or will they be sleepy and sick spending hours in bed trying to fight off this illness. Never to be detoured, never to falter.
Life ISN'T about waiting for the storm to pass... It's about learning to dance in the rain...!
Teagan's "fever" started to show up about 18 months. Up until that time he was happy, playful....might I say "normal"! Little by little symptoms of a "sickness" appeared. He liked to play by himself...he did not have anywhere close to the 20 words of a "normal" toddler. He did not wave good bye...he did not bring me toys to show off...and he was fascinated by moving parts, such as wheels on a toy car. He did not say MOMMY!
Danny and I spent nights laying in bed saying "it can't be autism, he does this...he does not do that". We did all we could to self diagnosis. We read books, we took online test, we filled out checklist. It was exhausting....and endless. At one point, with the help of others, we had talked ourselves into the fact that this was our fault. All because he was baby number 3 he had been indeed babied. Even to this day, Teagan's nickname at the house is Baby!
A very dear friend I have had for about 20 years said to me one night "How do you know Teagan is not just a 2 year old doing normal annoying 2 year old things?"Have you ever had a little voice inside of you telling you something and as much as you want to ignore it, it seems to get louder. Well from day to day I listen to that voice yet on other days I ignore it and banished it from my head completely. A commonphrase in our house is "see, there's nothing wrong with him" yet another common phrase in our house is "see, that's not 'normal'. It is that voice that tells me Teagan is unique.
What's hard about Teagan's initial diagnosis is that "inconsistency" is the cornerstone. What he does today, might be different tomorrow. What he likes today, could be the beginning of a 30 minute meltdown tomorrow. Much of what Teagan does day to day does seem like just a 2 year old being a 2 year old. However, Teagan's way is much like a puzzle piece (ironically the Autism Spectrum icon). That single piece seems like just a shape of color standing alone. There is no explanation to it and hard to visualize how it fits into the world. But by putting a lot of puzzle pieces together we begin to see the bigger picture. That piece with other pieces tells a story- paints the bigger picture. Teagan running a toy car over the wall, seems well, typical for his age. But he also runs DVD cases against that wall, flashlights, toy beads, a hair brush....you name it. He plays with it and you can guarantee that he will place that object on the wall and drag it endlessly. This is a sensory seeking, repetitive action that defines his diagnosis. Now another mom might say my child does that too, yet the difference is this action interferences with Teagan's ability to function as a human. When doing this, he does not relate to the world around him- instead his focus is on the scraping that this object is doing on the wall. Never to be detoured, never to falter.
A very dear friend I have had for about 20 years said to me one night "How do you know Teagan is not just a 2 year old doing normal annoying 2 year old things?"Have you ever had a little voice inside of you telling you something and as much as you want to ignore it, it seems to get louder. Well from day to day I listen to that voice yet on other days I ignore it and banished it from my head completely. A commonphrase in our house is "see, there's nothing wrong with him" yet another common phrase in our house is "see, that's not 'normal'. It is that voice that tells me Teagan is unique.
What's hard about Teagan's initial diagnosis is that "inconsistency" is the cornerstone. What he does today, might be different tomorrow. What he likes today, could be the beginning of a 30 minute meltdown tomorrow. Much of what Teagan does day to day does seem like just a 2 year old being a 2 year old. However, Teagan's way is much like a puzzle piece (ironically the Autism Spectrum icon). That single piece seems like just a shape of color standing alone. There is no explanation to it and hard to visualize how it fits into the world. But by putting a lot of puzzle pieces together we begin to see the bigger picture. That piece with other pieces tells a story- paints the bigger picture. Teagan running a toy car over the wall, seems well, typical for his age. But he also runs DVD cases against that wall, flashlights, toy beads, a hair brush....you name it. He plays with it and you can guarantee that he will place that object on the wall and drag it endlessly. This is a sensory seeking, repetitive action that defines his diagnosis. Now another mom might say my child does that too, yet the difference is this action interferences with Teagan's ability to function as a human. When doing this, he does not relate to the world around him- instead his focus is on the scraping that this object is doing on the wall. Never to be detoured, never to falter.
Life ISN'T about waiting for the storm to pass... It's about learning to dance in the rain...!
All and all, after each conversation I felt the urge to scream out..."It's autism DAMN it! I know it...now let's move on" Each night I thought of the behaviors of Teagan I felt an anxiety attack raging in my heart...my chest would tighten, my back would hurt, my heart would begin to pound. I could feel my head get hot...I could feel the beginning of a cold sweat! And then I would silently pray "Dear Lord, help me, help Teagan...just show me what to do, please!!!"As always, HE came through and HE has shown me what to do. HE has taught me to stand my ground...never to back down and to be the advocate HE wanted me to be, even before I was born.
Now the age of 3 is very significant when it comes to autism. There are parents who have children who started to regress at age 3. The child is moving along, developing perfectly and then BAM regression, in which the child begins to lose all the skills and language they had acquired from that point prior- Autism is not scary, but to HELL regression IS! If I have one single fear- that's it....regression. Such an ugly word! Such a hopeless, powerless situation! REGRESSION
Age 3 is also significant because many experts will not diagnosis a child with autism until they are 3. Which is so ironic because at this time, insurance will not pay for therapy after the 3 birthday. At this point, if you can make sense of the previous statement- text me, call me, message me...because this is ridiculous. However, each day that Teagan smiles at me....says "Thank you"...ask for a "drink" I am reminded that he is growing and that his birthday like others should be embraced. Teagan continues to grow, impress, and inspire. He might be only 3 years old, but his soul is old and wise. He has taught me things that some people never learn and for that I am thankful and humbled. Back in April, I asked all my friends to turn on their blue porch light for autism awareness. And even months later that light is a guide for both Teagan and me. Never to be detoured, never to falter.
" Even though I walk through the valley of the shadow of death, I will fear no evil, for you are with me; your rod and your staff, they comfort me." < Psalm 23:4 >
2 comments:
awesome awesome awesome post Jessica! :) i love the way your mind works! :) i have joined team teagan and also send up prayers for you and your family! :)
That was a good story.
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