Difficult Transitions

I wish someone had given me a heads-up as to what parenting a special needs child with a life-limiting disease is really like.  I wish someone would have told me about how consuming this type of lifestyle becomes.  I wish someone would have shared that tears (happy and sad), fear and hope, and chaos would become just a normal part of daily life.   I wish someone would have warned me that paranoia becomes as commonplace in daily life as breathing air.

For so many months, we didn’t think she would make it through her first year.  All the signs were pointing in this direction.   She presented with symptoms at birth, which is pretty rare even in a rare disease.  Almost everything I have read in the literature says that a child who presents within the first few months life rarely sees their first birthday.  Sadly, I have met families who have faced this horrible reality with this disease. 

But she is still here.  Thank god.  But why is she different?   She turns 14 months old tomorrow, and she is still here.  She is still smiling, still laughing, and still breathing on her own.   She is still growing, still developing, and still enjoying her life. 

I find myself changing my thoughts these days from not thinking about Hannah’s tomorrows to trying to prepare her for life.  All the multiple therapies each week, doctor’s appointments, procedures.  I do it because she is still here, and she is still fighting.   I do it because the specialists just have no idea what her prognosis is, which I interpret as, she is doing better than they expected her to be.

This transition in my parenting of Hannah is becoming much harder than I realized.  Trying to go from from the daily thoughts of losing my daughter every day to figuring out how to keep fighting for her and with her…it takes so much out of me emotionally.  She is so incredibly attached to me, and now I am trying to teach her some independence away from me…it hasn’t happened yet, but I know it needs to be done.

I’m finding it hard for me to realize her limitations and learning to adjust to this realization.  I see her doing so well in physical therapy, and I’m so excited that it is a real possibility that she will be walking by the time she is two years old.  But then I see how she really can’t crawl stil, no more than a few feet, and how she can’t get from a lying to sitting position on her own.  I also see the lack of development in her cognitive and adaptive behavior scores, especially in the past two months.  

My baby’s brain is diseased, a neurodegenerative brain disease.   It isn’t going to get any better tomorrow than it is today.  Sucks.

When I was given such a short prognosis for Hannah, I didn’t even worry myself about her delays, as they were not important.   Now I find myself getting depressed as I see other children Hannah’s age doing things that she is not even close to doing.  Hearing the innocent comments from strangers who see me with Hannah say things like “Oh, she must be running all over the place,” or “Is she chatting up a storm now?” just feel like daggers in my heart, yet I put on a smile face and just say “We are working on it” or “She is getting there.”  I don’t feel the need to tell the whole story to strangers.

It isn’t just her developmental delays that are so tough to deal with, it is also knowing in the back of my mind that everything could change some day soon.  Without a treatment, this disease will win.  It may not be tomorrow or next month or even next year, but there will be a point that this disease will win and take her away from me.   Without a treatment, this is just a fact.  Just even saying it here is killing me.  There very well will be the day when the other symptoms of this disease — seizures, swallowing difficulties, breathing difficulties, etc., will make their appearance known. 

I believe in my heart that if I was just dealing with her special needs that I would be able to adjust to all of this better.  But now, after writing it all out, I know that this “unknown” is what is tearing me up inside.  I don’t know what is going to happen or when it is going to happen.   Living with this hanging over my head is killing me.  

Do we have a year or two or even more than that?

It is past 1 am.  I should get some sleep.  Another big day tomorrow, 3 appointments for Hannah.  I don’t mind, I love her.

Little Ethan McKown, you will never be forgotten

I haven’t been able to get Little Ethan out of my mind since he passed away last week from Gaucher’s Disease type 2.   When his dad caught me the morning after he passed and told me what happened, it has felt like a knife in my heart.  I know my husband is feeling the same way, as it has been almost a week, and he is still reeling from the reality and senselessness of his death. 

I have received about a dozen or so emails over the past couple of months asking how he has been doing since his mom posted his story on my blog. 

His dad and I have chatted quite a bit over the past few months just keeping up on our kids.   The conversations were very open and sometimes brutually honest, especially between Darren (Little Ethan’s dad) and my husband.  I was grateful for their outlet to talk to each other, as my husband needed to reach out to another dad going through this disease.

I keep thinking about what my friend, Nicole, said after she lost her beautiful son, Greyson, to Krabbes disease at 11 months old.  She said that he finally was able to leave his “broken body” and be free to run, play, and soar.   I hope that he and Little Ethan find each other and run, play, and soar together.

I don’t think I have ever had such a reality check as I did with Little Ethan’s death.  We knew him for 7 months or so.  He is the 7th child to die of this disease since Hannah’s diagnosis that I know of.  

I go through periods when I think how different Hannah is going to be and how she is going to be the one to beat this disease.   Hope makes you believe this; the alternative is not an option at this point.  But then I also think back to Nicole’s comment and relating it to “Hannah’s broken body” because of this disease.

Little Ethan, you will always be in my heart.  I know that I will never, ever forget you. 

Good people

I feel so lucky to have so many good people in my life. 

After my vent the other day, I have received such an wonderful outpouring of hugs and suggestions.   This is why I share my heart here.   I couldn’t even begin to list everyone because I would be afraid of not being able to list them all. 

• To people like Petula and Sarah, who gave me suggestions as to at home jobs I never even knew about and definitely am looking into.
• To people like Nancy and Christine, moms of type 1 older children, who shared their struggles before there was a treatment for GD and offered support.
• To people like Melissa who offered to help with legal advice.
• To people like Larry who care for Hannah is just immeasurable.
• To people like Heather, Julie, Tracy, Manette, Kelly, Misty, etc., who travel hundreds of miles just to spend Hannah’s birthday with us.
• To people like Cassie, my sister-in-law, who is one of Hannah’s biggest advocates, who has given us so much more than I could even begin thank her for.
• To people like Dr. Bhakta, Dr. Weinreb, Dr. Schiffmann, Dr. Goker-Alpan, Dr. Sidransky, Catherine, everyone at the NGF, Kathleen at Genzyme, and other “professionals” who are involved with Hannah’s care and show such a personal interest in her well being.
• To other “special kid” moms like Karen, Melenie, Jessica, Nicole, Laura, Cristina, Melissa, Amanda, etc., who have been my personal support group, understanding what I am going through, and having them there to share the day-to-day struggles
• To my neighbors like Jill, Lauren, Megan, Tasha, Maria, Paula, etc., who always seem to be there when I need them.
• To my hubby…the best man in the entire world…best husband, best friend, just the best.

The list goes on and on.  It really does.  This is only just a small portion of the wonderful people that having Hannah in my life has brought me.

Whoever says “money can’t buy happiness” is full of crap

If we had the money…

• I would not have to worry about going back to work and would be able to take care of Hannah – talk about lifting 500 tons of stress off my shoulders!
• I would hire a part-time (12 to 15 hrs a week) ”special needs” baby sitter to take care of and play (therapy work) with Hannah while I could have a few hours every couple of  days to
  • get house stuff (bills/phone calls/research/cleaning) done
  • start working out and taking care of myself – can’t remember the last time I read a book or scrapbooked!
  • work on raising funds for and researching/organizing what GD, PD, Alz, and LSD research is out there
  • take time to plan out real dinners, organize coupons, and actually cook
• I would hire a cleaning crew to come to our house once a week so instead of concentrating on laundry/cleaning/etc., I could concentrate on all three kids yet not have the stress of a messy house
• I would try and find some kind of social groups that I could take Hannah to so she could learn to socialize with other children around her age

I have to admit.  The thought of having to go to work in a few months is killing me.  I WANT to be the one taking care of Hannah during the day, taking her to her appts and therapies and treatments.  I WANT to be home for Ethan and Abby when they get home from school.  I DO NOT WANT to put Hannah into a regular daycare setting where they are most likely not equipped to handle her special needs — what if she gets really upset for some reason (which happens), and she starts hyperventilating.  I am the only one right now who can calm her down…not even Daddy or the other kids.  It is killing me that she could have an episode like this — I don’t know what would happen if she hyperventilates too long. 

Not only that, but how can I get a job yet be able to go downtown every other Monday for her IV Cerezyme infusion?  What school administrator is going to say – sure, we’ll hire you as a teacher and no problem taking off every other Monday.  Home Health isn’t an option because of her age, so it has to be administered in the hospital setting, which is only available during the week.  And her doctor appointments of which there are many — who is going to take her to those?  Do I take more time off for that? 

So, whoever said “money can’t buy happiness” is full of crap.  It could buy me peace of mind that I can be the one to take care of my family, not stress about paying the bills, and it would relieve a lot of anxiety and tension in the house that is being caused by “mommy will have to go back to work.”

Vent over… back to real life…

Hannah and her global developmental delays at 12 months

When I’m with Hannah, and there aren’t other kids around (which is often), I forget or cast aside the fact that she has global developmental delays.  She’s just Hannah.

But then I see her around other children, like at her birthday party, and I can see how delayed she really is and in so many different areas…physically, adaptive behavior, communication, cognition, etc.  It gets hard to see sometimes.

I came across this checklist from the CDC called “Important Milestones by the end of the first year (12 months).”  I put the ones that are a definite “yes” in gray, but the ones that are a “no” or “not yet” I left in black.  There is too much black, which breaks my heart when you see it all at once.

Social and Emotional

• Shy or anxious with strangers – yes
• Cries when mother or father leaves – yes
• Enjoys imitating people in his play – no
• Shows specific preferences for certain people and toys – yes
• Tests parental responses to his actions during feedings – no
• Tests parental responses to his behavior – no
• May be fearful in some situations – yes
• Prefers mother and/or regular caregiver over all others – yes
• Repeats sounds or gestures for attention – not really
• Finger-feeds himself – probably could, but with her sensory issues she doesn’t actually eat it
• Extends arm or leg to help when being dressed – yes

Cognitive

• Explores objects in many different ways (shaking, banging, throwing, dropping) – shaking and banging
• Finds hidden objects easily – no
• Looks at correct picture when the image is named – no
• Imitates gestures – no
• Begins to use objects correctly (drinking from cup, brushing hair, dialing phone, listening to receiver)  – no

Language
• Pays increasing attention to speech – no
• Responds to simple verbal requests – no, except for “uppies” (meaning to be lifted up)
• Responds to “no” – no
• Uses simple gestures, such as shaking head for “no” – no
• Babbles with inflection (changes in tone) – no, but she does babble a lot!
• Says “dada” and “mama” – no
• Uses exclamations, such as “Oh-oh!” – no
• Tries to imitate words – no

Movement

• Reaches sitting position without assistance – no
• Crawls forward on belly – just now working on the commando crawl
• Assumes hands-and-knees position – starting to get there, difficult with her hypotonia and loose knee ligaments
• Creeps on hands and knees – working on it
• Gets from sitting to crawling or prone (lying on stomach) position – yes, but not gracefully (kinda falls down)
• Pulls self up to stand – only when seated in a certain position
• Walks holding on to furniture – no
• Stands momentarily without support – no
• May walk two or three steps without support – no

Hand and Finger Skills

• Uses pincer grasp – just starting
• Bangs two objects together – yes
• Puts objects into container – no
• Takes objects out of container – yes
• Lets objects go voluntarily – yes
• Pokes with index finger - yes
• Tries to imitate scribbling - no
  
  Developmental Health Watch (Hannah’s listed below):
• Does not crawl
• Does not search for objects that are hidden while he or she watches
• Says no single words (“mama” or “dada”)
• Does not learn to use gestures, such as waving or shaking head
• Does not point to objects or pictures

On the eve of a celebration

In about 14 hours, Hannah’s first birthday party celebration is going to begin.  We have spent the day putting up balloons, reorganizing the house, and just preparing for this momentous event.   We have received dozens of birthday cards and some gifts from friends and well-wishers, which have made this milestone even more exciting to celebrate knowing that so many people care about Hannah and are cheering her on. 

But tonight I have to take a step back and realize how far we have come in our fight against this disease.   We have made it to her first birthday.  However, in just the past couple of weeks, we have lost a sweet little 8-month-old boy to Gaucher’s type 2 and have two GD2 children fighting for their lives right now.   I only know of about 20 families with kids living with this disease as it is. 

This disease is just brutal.  It shouldn’t be this way.  I keep thinking…Will Hannah make it to her second birthday?

Remembering…

During these past few weeks, I feel like I have been on an emotional roller coaster, a journey of self-discovery and self-awakening which all seemed to hit me as we finally made it back home after two weeks of crazy travelling.

For the past year and a half, since I found out I was pregnant, I have felt somewhat disconnected from myself.  It all seemed to pile on top of each other – finding out I was pregnant at 9 weeks after 10+ years of infertility and multiple miscarriages and 4 IVfs among other things, developing pregnancy-induced hypertension at 28 weeks, and then strict bedrest at 29 weeks.  I spent all last summer in bed, only allowed to pick my kids up at camp and to come down for meals.  Then, the “we are doing it now” moment at 36w1d when my blood pressure was just too high, even on the mega doses of BP medications which made me so ill that I ended up sleeping almost 14 hours a day.  I remember asking my OBGYN, do I have time to pack some things?  He gave me 5 hours before I had to come back to the hospital.

Hannah’s entrance was effortless.  A 5-minute CSection without complications.  Apgars 8/9.  She took my breath away.  I remember seeing her for the first time when I was rolled into the recovery area, and I kept saying “Is she really mine?  Is this for real?”

We had about two days of bliss with our new baby girl until all hell broke loose, and things haven’t been the same since…

This past year has been such a whirlwind, almost a blur.  I would have never imagined that I would be thrown into this world

• a world where my daughter’s life is being threatened before she even has a chance to “be” a child
• a world where I would be emailing with researchers and doctors all over the world, trying to learn everything and anything I can about what Hannah’s body is doing to her and what can be done
• a world where previous relationships are unknowingly tested and true colors of people are shown
• a world where the death of a young child is, well, seen more often than a mom should have to experience
• a world where new relationships are formed that are stronger, deeper, and more meaningful than many existing relationships because there is a unique bond, a bond of a child’s life being threatened or taken away

I could have never have imagined this life in my wildest dreams…yet, here I am.

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