Tag Archives: #sensorydisorders

Another Goal Done? The Bucket List After Cancer Treatment

Hope was just 4 years old.  I was in my second trimester with Addison and we went to a local children’s amusement park.  I ran into one of my old co-worker at the time.  This is the type you do not speak to.  After I witnessed my first ever human die, which was my daughter Avery, he decided to bring his newborn twins in on my original due date, while I was at work.  So years later, I didn’t go near him People never understood that I suffered from flash backs of Avery’s death.  The pain of it all… Here it was my brain was trying to heal by repeating processing her moments of death.  All these happy couples with newborns couldn’t get, I couldn’t hold or look at their babies.  It had nothing to do with them, but the fact that I was grieving.

I was very careful not to get on any of the rides at the park since I was pregnant with Addison.  It would be the last time Hope would ever go in her early childhood.  It was Columbus Day weekend and I was hoping for a miracle.

The memory…..  Sweet Addison….  The doctors said it would never happen again.  Her sister Avery died of Campomelic Dysplasia, a rare disease.  A few weeks later, I was heart broken looking at the ultra sound screen.  Addison looked like Avery.  It was October 30th, the day before Halloween.  Our conversation to the hospital that day before learning the news was filled with dreams.  I pointed out a mini van at a used dealership.  I was going to have a dog too.  It was like watching the Titanic go down.  A week before Thanksgiving, Addison had died in utero.  In 10 months, I lost my baby, job, got a job, got diagnosis with breast cancer and buried my mother.

When I was in cancer treatment overlooking the Charles River in Boston, I had a bucket list.  I was a pretty active cancer patient.  We did Girl Scouts. I worked 32 hours per week.  I helped my kindergartener through homework.  I had what I call Charles River dreams of after cancer treatment.  Please pass me my magic wand!  I was going to the happy maternity ward!  When the baby was old enough, we were going back to the amusement park.  It was 2009.  In 2015, my dreams came true.  I had another rainbow.

May I say this affectionately?  My daughter Joy, the second rainbow has attentional issues.  I say this with gratitude for her life.  She appears to have a sensory disorder and she is a thrill seeker.  It’s like having someone on suicide watch 24/7.  If one item is not right, she finds it.    Joy is a bolting hazard.  I suffer from nerve damage on my left arm due to cancer treatment.  She can never be left alone.  It’s a struggle to get her in the shopping cart.  She unbuckles herself and stands up.  I promised the girls this trip to NH.  Again the leash part to back pack harness is missing again.  This time, I brought handcuffs.  Not real ones, They are actually called wrist links for toddlers.  “You are only going if you wear these at all times.” I tell her.  I am getting an understanding Joy is in constant Fight or Flight due to the sensory overload.

This trip has made me consider stopping the overnights.  Today, the dog needed to be dropped off.  We have a cat with seizures now.  Every pet sitter said no.  I only found a kennel.  They open at 9AM.  It’s a three hour drive.  Once again, we have to beg our in-laws, so we can leave at 6AM.  The kennel says come in and fill out a packet.  I already see the Joy scene in my head.   I drove by to drop off the paperwork.  I hand write out the feeding and medication instructions.  They closed until 5PM.  My husband is confirming with my inlaws.  I am timing the seizure medication on the cat.  I get there at 5 to review the paperwork.  The time I pick is not good.  These one night trips are just not worth it anymore.

I am getting my dream to return to the amusement park after a day’s worth of phone calls to find someone.  Our vet wanted to charge us an extra $50 if another tech needed to come in.  The hospital our cat was admitted wanted $212 for medical boarding.  Here I am packing for everyone just saying this isn’t worth it anymore.

I have also been looking at my co-dependency issues more.  I am not as close to my husband anymore.  I was going to try to take him to Albany NY for his birthday.  My village in life is who I pay for.  I had a huge argument with my teen ager about cleaning her room before the grandparents come over.  I am just not enjoying myself on this mini gateways anymore.  A promise is a promise.  I pulled my oldest aside and said this isn’t worth the energy that goes into making these trips happen anymore.  Now, I am on the mercy of people who have canceled before.  My oldest, I am planning to take to a mountain named after her school mascot.  Here I am seeing myself rush around a mountain to get through traffic to get to two animals located 15 miles apart from one another.  I can’t do this anymore.  Disney World is in stone next summer.  I done with this.

I also have a lot of sad memories of NH due to my bio-father.  The man did what he could to tell me that I wasn’t worth it.  Since his death, I have worried if he was buried or not.  Last summer, I woke up and discovered he was buried thanks to the internet an hour away from where we are going.  It’s been an emotional day of should I go and say good bye.  I have thought this over.  It’s not the right time for me.  It’s going to be an emotional roller coaster to just get through the gates of the amusement park.  I have been overwhelmed most of the day today.  It needs to be at a time where I am with someone to console me. I need someone to undo the message that I don’t matter.   If I went this weekend, I would be driving the only car and leaving the family at the hotel.  Not a good combination.  I let that one go.

This weekend, let’s honor the memory of Baby Addison.  She never got a turn.  How much I loved my angels!  Leave unfinish biofather business for another day.  Let the next 12 hours be a moving moment to remember Addison and fun for Joy and Hope!

Advertisements

The Lemons and Lemonade of Summer: Now Fall

Unofficially, summer ends on Labor Day.  According to the planet, we have a few more weeks.  This summer was way better than last year.   (Can you tell I started this one a few weeks ago.  It’s now Fall.) There was the lemons, all the plain accidents amongst family members that everyone has recover from.  No need to recap.

August is the rainbow parade of birthdays for our family.  Hope, my oldest is an teen ager now.  Joy had her first dry day of potty training on her big sister’s birthday.   She is not perfect.  She is having an accident a day. A few days there are none. I thought, I brought both home yesterday in infant carriers.  It’s a new school year and with it a new school year resolution.  So far, we have been arriving at the school with 10 extra minutes.  Her anxiety was high.  The oldest Hope will be in high school next year.

It seemed like the summer of health issues for the fur babies too.  We are facing a real life threatening crisis with our cat Raven.  The week of my youngest’s third birthday, I got a hysterical facetime message from my oldest Hope that something was wrong with the cat.  I watch his body flip around on the floor.  Hope was crying so hard.  I said to Hope it was either a seizure or a stroke.  I ended up leaving work.  A neighbor came over to be with Hope.  His vet said it was a seizure.  We ruled out poisoning.  We had to drive him to a local 24 hour hospital.

The vet bills have been high since the ferret died in May.  They told me he could have an MRI to rule out brain cancer.  I kept saying this cat is only seven.  I was corrected he was closer to 10.  Remember Raven is the cat, I found after my Christmas miscarriage.  An MRI is between $2,000 to $3,000.  The local 24 hour hospital had no vet neurologist.  The cat had another seizure.  An MRI seemed too expensive.   We decided to drive him to a veterinary hospital in Boston with a neurologist.  He came home the night before Joy’s 3rd birthday and he was blind.  I set up Joy’s play n pack and slept with one eye open.  The moment she woke up she said, “Raven is home for my birthday, momma.”  The other option was to try a combination of medication.  His symptoms also were common for a type of infection.  I talked it out with a few people.  We have to wait 6 months to see if he has another seizure.  If he does, it may be brain cancer and at some point the seizure medication will fail.  

Raven, a month later, is still blind.  Over the passing week, he has full range of the house now.  He navigates it well.  We are tapering his meds and hoping for the best.  The seizure med is for life.  The blindness will never go away.

Joy completed Early Intervention the day before her birthday.  My husband and I have gone back and forth about whether the school system should be involved.  We are rolling the dice and not involving the school system.   The Early Intervention had loaned her a compression vest to address her sensory issues.  We had a lot of issues between what Early Intervention had believed about the company on Joy’s last day.  She handed the loaner vest to the occupational therapist on her last day. It was a big moment for Little Joy.  Bless Joy! Thankfully, I placed the order before the occupational therapist suggested it.  It was coming from a foreign country, which held up the delivery.  We resolved the issues for a long time I thought I ordered the wrong one from the wrong company.   The president of the company was kind enough to call me back.  We had a learning moment for everyone.

It was a long wait for Joy for one week. and you could see her tension building.  First, her cat is on his death bed for all we know.  Second, it was her third birthday. (FYI: Thankfully, because she is three, she did not connect the idea that Raven was so ill before her birthday. I pulled the oldest side and told her not to connect the dots for Joy.  With her toddler innocence, she loved her birthday.  Raven’s illness was a separate incident. I peeled my eyes open from the lack of sleep and we had a good time. ) Third, the daycare was closed for vacation.  We kept to her sensory plan.  Joy surprised me.   I sent a lot of emails about obtaining her vest. It came that Friday of Labor Day weekend.  I took Labor Day weekend off.  We had the best time on day trips.

Hope had anxiety going into her last year of middle school.  Driving the cat from vet to vet costed her time on her summer reading and the worksheet packet.  Somehow, the outfits were brought. The school supplies was gathered.  Her hair got cut.  The reading packet was done late that night.  She started school the week before Labor Day as the school system in the next town over signed a law school is starting earlier.

I looked into possibly starting my own business all summer.  It’s a continuing to be a  working process project.  We are still waiting for the referral for Joy to be written for her to see an occupational therapist.  It’s been like pulling teeth.  The school system is not going to offer me something that doesn’t interfere with my work schedule.   I can’t afford lost work at this point anymore.   I am waiting to see how much we are going to owe on this new occupational therapy practice.  We owe up to $2,000 dollars on a deductible.

I got so tired looking for new homes in the town Hope goes to school in.  I was being turned down by my husband before ever seeing a house that I stopped asking.  It happened like I thought.  I put my back into fixing the house up to put it up for sale and he has thought of every excuse in the book.  In good news, no mold returned.  It took two years for us to clean the house to this point.  I also moved the family into the 21st century and got a dishwasher.    If there is ever a next time, I am demanding a home loan and professionals to help.  I actually relearned how co-dependent I was.  My husband learned how important it is to stay sober.  He has been for over a year now.

As for us, we function well as co-parents.  We are emotionally divorced.  I do love him just not in the same way.  Somedays, I grieve what was and what is our lives.  About two years after the breast cancer and the death of Addison, the drift started.  Other than having a loving guy with a twinkle in his eye for me, there is nothing missing in my life.   No one is being abused.  Next year in July, it will be 20 years.  I have been continuing to have a night out for myself with various hobby groups.  I continue to grow socially after being withdrawn for so long.  Sadly, the one problem in the universe I said we would never have, we do.  We turned into roommates.

Right before breast cancer surgery number 2, I arranged for the reverend who married us to come to the house to renew our wedding vows.  I knew we were about to find out who the carrier of the rare disease that killed our children was.  I wanted him to know that I would marry him again.  It’s not forever, but we are.  I continue to be a member of a support group and live my life, because I got the message after surviving breast cancer.  Life is too short.

We also did some wonderful donations in honor of our children recently.  The city had a Halloween costume drive for low income residents.  Unfortunately, all of Hope’s was inherited by Joy.  I brought some used ones.  The woman was kind enough to include more when I told her about our project.  There was a few Joy wouldn’t use.  I think it ended up being a hand full of costumes donated.  They plan to name one of the collection monsters Ariel (The name Joy picked and display the names  In Memorial to Avery, Addison and Haven Crompton.)

Sadly, an older child died from the Campomelic Dysplasia group.  Some of the money from the angel fund (the fund of collecting change donated in memory of our children) went to her funeral.  I cried a lot last week.  I am heartbroken for the family.  Then, the doggie daycare did a drive for the recent hurricane victims so items were sent there.

We ended up staying home this weekend.  I got a cold with multiple asthma attacks so I couldn’t finish my work day yesterday.  I slept most of yesterday.  We were suppose to go to a medieval fair for Hope’s history project.  My husband has been concerned about his bank being sold to another.  In the mist of all of this, I felt better enough for a local activity a touch a truck. (Joy loves school buses.  They didn’t have one.  She loved the trucks. )

It all connected to rare disease.  I did not speak of my concern for years.   I sat on this for a long time.   In the world of infertility, breast cancer and rare disease, it is all connected.  I am thinking of my wording here.  Neither husband or oldest child has access to this site.

There are developmental milestones as we women experience in puberty to get ready to bear children.  Hope is 13 years old.  We have had the conversation about birth control and going to the doctor’s prior to this.  I reached my milestone at the age of 11.  Hope it never happened.  My husband and I began to panic that perhaps this pointed to Hope being infertile.  Remember, the medical community is just guessing it will never effect Hope that she is a carrier of this rare disease.  They believe it is isolated to just our generation.  Hope reached that developmental milestone today.  When I did, I was spoken to about never getting pregnant until I was old enough by my mom.  It’s really hurt when I needed a fertility clinic.  I am not putting my mother on the spot.  My mother had every right to be concerned. There are a lot of family members, who had teen pregnancy.  I congratulated Hope for reaching that milestone.  I did not revisit the issue of birth control and seeing the doctor before having a baby to get updated about the rare disease.  I wasn’t ever ready to be apart of the first documented family.  I did not lecture how we were for the first documented case of carrying a fatal rare disease.  Not today, no need to damage another generation about the beauty of her body.  I hope the doctors are right.  Campomelic Dysplasia testing is in the US now.  I wish for Hope a life with wonderful career in whatever makes her happy, a long close relationship with that sister rainbow, for her to find love that lasts a lifetime, a child when she wishes with no fertility center needed and long living parents to drive her nuts!  After starting this post, 3 weeks later it is done! Amen from the agnostic mother of Hope and Joy!

Your Pink Elephant Is Real!

I sat through two appointments today about what to do with my youngest, who is 2 year old and having attentional/sensory issues.  This week has been a whirl wind.  I am trying to catch up after having a bad case of the stomach flu.  My oldest had an appointment too, due to her anxiety over middle school.  She is going to be going to counseling for  a bit.

It’s like this. Last fall, we paid a $1000 for the front end of my car to be rebuilt after a tire popped on the highway.  Thankfully, we walked away. I started hearing more noises lately.  It’s an inspection sticker month.  I asked them to look for the source of these noises.   I am hoping they just say your crazy lady.  I returned to get more $1000 estimates on more work to be done.

I was hoping the day of my 2 1/2 year old evaluation I was hoping to hear I was crazy too!  My gut is often correct.  The worry is setting in.  She is two and half and she needs services for attentional/sensory issues.  What is her future going to be like?  What will kindergarten be like?  I feel the guilt, the worry and the blame.

Remember something, my first daughter died from Campomelic Dysplasia.  I was a Rare Mom first.  I learned rather quickly how to advocate for Avery in the 14 weeks we knew.  It happened again.  I advocated for Addison.  Shortly later the breast cancer came.  We are not talking a rare disease or cancer.  Weather it’s migraines or sensory/attention issues, this rare mom is up for the challenge, because Avery Bravery taught me so.  Even through these are more common problems, my brain is on it!

Next week will be a little emotional for me.  It’s my birthday.  I am not grieving getting old.  I grieving my losses.  My father was extremely verbally abusive.  I knew that I was not wanted at an early age.  My mother gave me all she had.  It was my saving grace.  There is still a piece of me that makes me feel like a loser.  It is at this time a year, I miss my mom and my angel children the most.  I see what others have.  The negative thinking is having a field day in my mind. The empty parts of me light up with intensity.   My sadness has lessen compared to other years, when I would wake up in tears around my birthday.  Some days the emptiness of his words punch through.  I have plans to quietly celebrate my day.  This weekend with friends.  Next week, I will celebrate with the girls on the actual day.

Lately, my career path options has been popping up.  My resolution was to bring our family to a healthier path.  I signed papers for the school system to look at my youngest daughter.  She only has about 5 months with Early Intervention.  More time pressures on my schedule at work are possible.  This week was filled with antagonistic comments. I couldn’t fight them.  I feel like I work harder than I need too.  There are other options to make my life easier.  I don’t claim to have the perfect balance.  After Campomelic Dysplasia and Cancer, I don’t have the same priorities. Surely, there must be more options.  Life can’t be this hard.

There is a housing shortage.  All this hard work to get out of this city.  The houses without needing work are too expensive.  The thought of moving out of this house into another fixer upper depresses me.  We put so much into this house.  It may not be this year the big move.  I am hoping.  The last big project is the bathroom being redone.  No house is without work to be done.  Hopefully, we find that dream house and move on.  The other town is top preference.  I was told if my daughter could walk to a bus stop, they would consider transporting her.  Not so much is up in the air as compared to other times in my life.  I am going to hope.  I may take a plunge into a new career move.

PS-The doctor thinks Joy may have some milk protein allergy going on.   She is doing way better on milk free milk like Almond milk.  The eczema cleared up on her skin Her acid reflux meds are fine.  She recently had regular milk by accident.  Her behavior was uncontrollable and she had diarrhea.