Punky Mama


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Allergic Reactions and Therapy

Today was Aaron’s yearly allergy testing and it was a mixed bag of results. After a year of ingesting baked egg Aaron’s skin no longer reacts to egg as an allergen.  This means that he is cleared for a full on egg challenge in October. That’s the good news.  The bad news is he reacted stronger than ever to his other allergens and at the end of the test Aaron’s blood pressure dropped a bit and he felt queasy.  His doctor and two nurses sat with him a bit and they cleaned off his arm, and gave him some antihistamines topically and orally.  After about fifteen minutes he felt better but it was plain scary to watch. It brought up all the scary feelings I have surrounding the fact I have a kid who is seriously allergic to what nurtures most others. I brings up all the feelings of wanting to put him in a bubble and lock him away safe from the rest of the world. Yes, I know he has to live but when his allergens on his skin bring forth such reactions I am more scared than ever. They are fears that usually I tuck away with worse case scenarios but when I have a close reminder it is hard to keep a lid on it all.  We followed that appointment with Ryan’s therapy appointment.  He is his usual summer mess. We talked about his continual issues he has had since the spring and it all left me feeling more overwhelmed with it all than I have in a while.

 


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Happy 10th Birthday Aaron!

Dear Aaron,

The last decade has flown by.  I can’t believe you are ten.  From the moment you arrived my life feels as though time has traveled at warp speed.

Aaron with popsicles for his teammates on his birthday!

Aaron with popsicles for his teammates on his birthday!

If I had to use one word to describe you it’s capable.  You can and will do anything you set your mind to.  You are intelligent beyond your years, highly organized, passionate, and you give the best hugs ever. Earlier this year we went to help organize your grandmothers belongings after she died. I chose to take you with me.  You ordered around all the men in your father’s family and they listened but you had everything more organized than an adult would have it. I couldn’t have been prouder.

You love school, you love to read, and insist on weekly library visits where you devour  books at breakneck speed. You are thriving at Ed Plus and the small school suits your temperament. You are a helper and thrive on attention from your teacher. When you are in a class of fifteen students with two teachers it is easy to get the attention you crave. You are smart and move quickly through school. I think this environment is great for you know but your Dad and I will have to reassess school for you once you get a bit older.

Punk Island was a long long day.

Punk Island was a long long day.

I feel sad sometimes that I don’t have more time for just you. Ryan demands a lot of attention and he is your biggest frustration. I know how difficult it is sometimes to live with him.  I never see you more frustrated as I do when Ryan is going off and won’t leave you alone.  I understand because I get frustrated too. I try to do things with you and you alone. This spring you and I planted a container garden with vegetables and flowers. When Ryan sleeps late we go out and look at the plants and see how they are doing. Recently looking at the plants let to a conversation about plants that liked wetter conditions so we started researching it on the internet. Somehow it morphed into learning what plants attracted butterflies.  We learned about milkweed that day. Now every time we see milkweed you exclaim look MILKWEED!

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Getting ready to race!

This has been a tough swim year for you. You were in the 8 and under for four long years, moving to the 10 and under age group is hard because you have to learn to do flip turns every race and streamlines at the start and the turn. You are doing so well with the transition and your strokes are just so pretty to watch.  I see you frustrated with your times but I promise the speed will come, little one.

You have been amazingly supportive of our participation in Thorazine.  You sit at rehearsals, long studio sessions, and come to shows and festivals in where some days start at 3:45 AM and don’t end till 1am.  You have been amazing through it all.  Often when the pit breaks out at shows you go behind the merch table.  You opted not to come on this summer tour claiming being in the car all day everyday would be more hardship than fun.  You are going to go off to be spoiled by your aunt and attend day camp for the first time. You are very excited.

This next week you are going to the allergist for your annual allergy testing. You hate this necessary yearly evil.  The blood draw upsets you every time. This year may be very exciting. You have been eating baked egg for almost a year and its has gone well.  Next is a full on egg challenge but I am very confident you have finally out grown one of your allergens.  This makes me so happy for you because it will change what you can eat.  I am going to make pancakes with egg the day you do grow out of your allergens because personally I hate egg replacer and I can’t wait to make you fluffy pancakes.

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A great way to spend a rainy Saturday evening

Aaron you are one sweet kid and I am overjoyed to be your Mom. You are patient beyond your years and I was happy to bring you breakfast in bed this morning. I never want you to think you are the forgotten child because I love and adore you so much.

I hope your tenth year is the best one yet.  Welcome to double digits!

Aaron rocking out from his spot in the studio kitchen!

Aaron rocking out from his spot in the studio kitchen!

Love your Mom.


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It’s For The Best Mom

On Saturday morning I got up after working a night shift.  Ryan was off walking the neighbors dog which is his summer job, Elliott was up in the shower.  Aaron and I were hanging out. Suddenly it hit me.  Thorazine leaves on tour in less than eight weeks and I am about to leave my little one behind for over ten days.  The most I have been away from him is two nights since he was born. A panic started to spread through my body.  I said, Aaron I am freaking out a little about leaving you when we go on tour. I am going to miss you so much.

He looked at me with is dreamy green eyes and put his hand on my arm.  He said Mom, we have technology now and we can skype and facetime every single day! He went on, I can read labels and I promise to keep myself safe from my food allergies.   I am looking forward to going to camp for the first time.  He hugged me and said, Mom really it is for the best.  I don’t want to drive all the way across the country and then up the coast.  I can’t stay up late everyday and be well behaved with Ryan all day everyday in a vehicle.  I might want to come next time but I am not sure I am old enough to go on tour now. He went on you guys need to go.  I have been hearing about tour since I was a baby but I am not ready to be part of it. The band makes my parents special.

I hugged him hard and I though this is the same kid who when he was three year old and started preschool told me not to take pictures and to leave just did it again in another way. He basically is sending me off on tour and told me that he will be fine.

I still worry because I am his Mom.  At the same time I could not be any prouder of his independence and in reality, I can’t wait to play music every single day with my best friends for ten days!


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School End

Finally the busy school year is over.  It was a mixed bag.  Aaron is doing wonderfully academically, socially, and in an way he can.  He is a helpful kid and his teacher had such glowing things to say and we could not be prouder.

As it has always been, Ryan has struggled on and off this year in school.  His teacher is a kind patient educator who has tries everything she can for her students. With the beginnings of puberty Ryan has struggled more than he has in a few years.  He was in trouble at school, home, and swim team.  He struggled with the other students and most of all he struggled academically.  It was painfully difficult to watch and some of the bad grades were him not following directions and not doing that needed to be done. The summer started rough as transitions are not his strong suit but a few days in he is doing better.

I think it is time to visit the developmental pediatrician’s again.  Try to see if there are medications for Ryan that don’t make him swell up and turn red. To see if there are any other therapies we should be trying for him. I called today and because we have not been seen in a few ears I had to go through intake all over again, fill out new paperwork, then wait six months for an appointment.

Wish us luck.


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The Sky Is The Limit

We have been busy.  My mother in law’s estate is not going to sell itself and I am so tired of living with the boxes.  The Thorazine summer tour is just about booked (just one date left to fill), Aaron has a reservation at camp that week near my sisters house, and we are working on our travel plans.  School is winding down and in a matter of weeks I will be working at my summer job of being a cruise director for kids. It’s all good.

Ryan has been struggling a bit. He knows a transition is coming and he is starting to do his normal acting out around a transition. His BSC, the school, and I are trying to support him while he takes responsibility for his own actions. There have been a few meetings too.  He moves to middle school this year and it is a big deal. The school and the BSC are working on him taking more responsibility for himself. It’s all positive.

We have been doing some advocacy for the boys school.  The school lays in a grey area.  It is a cyber charter with learning centers which a unique use of a cyber charter.  The legislators were interested in learning more and wanted to see how Ed Plus has morphed their idea of a cyber charter. They were also discussing funding to cyber charter schools. They asked me if I could come and be the voice of Ed Plus parents and they invited my kids to be there. They asked if the boys wanted to speak.  Aaron did not want to speak but he wanted to be there. Ryan stood up in front of four State Representative, the head of his school, and assorted other parents and staffers.  He did so well, stood up, and told his story. Proud does not even describe how I felt about him choosing to do this. I didn’t get all the kids speaking because my phone ran out of space.  The audio is low so you have to listen carefully.

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