Happy Thanksgiving

Thanksgiving is always a time of reflection for me.  I like to think of all the things that happened the past year and take the time to appreciate how blessed I am.  This Thanksgiving is a tough one for me.  It’s the first time in my life I don’t have my Dad with me or just a phone call away on my favorite holiday.  I can’t even begin to tell you how hard that is for me.  But my Dad would tell me there wasn’t anything I could do about it and the best thing would be just to get on with my life.  So I will.  So here are the things I am thankful for this year:

1.       Kevin.  For some unknown reason this amazing man fell in love with me, married me, and now is forced to put up with me on a daily basis.  I have been in love with him for 9 years and he still gives me butterflies.  I don’t think I would have gotten through everything we have been through with Jackson without him by my side.  He’s so much stronger and better than me.  And even though I am a royal pain the ass sometimes, he stills loves me.  For that, I am immensely thankful.

2.       Jackson.  Who wouldn’t be thankful for this amazing, beautiful, funny little boy who has taught me so many lessons in the last 2 ½ years that I would have never learned with a “normal” child.  I’m thankful for his chubby cheeks that enable me to plant endless kisses on every day.  I’m thankful for his sweet cuddles, his adorable nose, his contagious laugh, and most of all the intense love he has allowed me to experience.

3.       Friends.  I put up a post about our friends a couple of weeks ago. You all know who you are.  I am soooooo thankful for you!

4.       Family.  Kevin, Jackson and I are blessed beyond words with our amazing families.  Their support, love and friendship make me thankful every day to have them in our lives.

5.       Home.  I am thankful that I have a home to come home to.  A home that has heat, food in the fridge, and love. 

6.       Darwin Rutledge.  My Dad.  I’m thankful I had him for 39 years.  I just wish I could have had him for 39 more.  I love you and miss you Dad.

Happy Thanksgiving to all of you and thanks for letting me share our lives with you! 

My Love/Hate Relationship with Hope

A few weeks ago Jackson said “dog” during speech therapy.  I think he was mimicking his speech therapist when he said it, which is huge.  That’s how kids start talking, through mimicking.  Yesterday at therapy he said “hi” to his physical therapist when she said it to him.  Today at therapy he said “ba” while playing with a ball and after his speech therapist had said it many times.  Driving home from therapy today I was thinking this over - are these just flukes?  I don’t think so.  Maybe if he had just said “dog” and not anything else I would believe it was a fluke.  But I really feel like maybe he is starting to talk a little.  And that scares me.  Not that he is starting to talk, that’s not scary, that’s amazing.  It’s that I am starting to hope for it.  The honest to god truth is that I resigned myself to believing he would never talk.  It’s hard to admit because I feel like a horrible mother for not believing my child could do something.  It’s true though.  I didn’t think he would talk.  So many kids with PMG don’t talk and somewhere along the road I put him in that group of kids.  I had given up hope.  Which, quite frankly, is easier for me to do than holding on to hope.  Holding on to hope is scary and potentially devastating.  I’ve been devastated enough lately (2010 sucks) and have been feeling kind of wounded.  So instead of hoping I just assume the worst.  I think one of those fancy shrinks would probably tell me what I’m doing is called self preservation.  I’m protecting myself from being hurt.  Perhaps.  But I’m also hurting myself because it makes me afraid to want things for Jackson.  How do I get myself out of this mess?  I truly don’t know.  You have any ideas for me?  I have a feeling this may be a battle and struggle for me for a long time.  I want so many things for my beautiful little boy, and I will do whatever it takes to give him the best shot at leading a happy, fulfilling life.  To do that I am going to need to believe he can do anything and support him endlessly.  And to do that, I am going to have to have a little hope.  Stupid hope.  I suppose this is something all moms go through, wanting to believe but afraid of being shut down.  As I sit here writing, I can feel it inching its way into my body now, hope that Jackson is going to talk and I will someday get to hear him say “Mommy” or even better “I love you”.  I guess the only thing to do is embrace it and take that leap.  So hello hope, please don’t let me down.  Please let Jackson talk.

Friends

I read a statistic today that says you will go through 396 friends in a lifetime but will have only 33 at any one time.  I disagree about the 33 part.  Most of us just have to log on to Facebook and we instantly have access to considerably more than 33 friends, right?  But the reason I really disagree is because of Jackson and his diagnosis.  I have had a lot of friends come and go in my life but have always felt that I was a pretty good judge of character and chose my friends well.  When we got Jackson’s diagnosis and the shock started wearing off, we began to tell more and more people about it.  I think at some point I actually sent out a mass email because there were just too many people to try and contact.  Honestly, I secretly wondered if some of our friends would “drop” us.  All of the sudden our lives were very different from all our friends.  Our priorities changed, our lifestyle changed, our amount of free time changed.  It wasn’t hard to see that the Klim’s were on a different track than a lot of our friends, with or without kids.  Plus I feared the pity parties that we might get.  I didn’t want people’s pity and I surely didn’t want the sorrowful looks I knew we were in store for.  So we told people and I just kind of hoped for the best.  I kind of figured that if we did have friends drop us, they weren’t really friends I wanted anyway.  Boy did I underestimate my friends!  I didn’t get any pity parties (not to my face anyway).  Instead I had friends cry with me, send supporting letters and emails, and phone calls to see if we needed anything.  Instead of dropping us our friends have embraced not only us, but more importantly Jackson.  The most surprising thing was we actually have made friends.  Those who were just acquaintances have become good friends and supporters.  Friends who I haven’t really kept in touch with have come out of the woodwork and renewed friendships.  I was right, I did and do have good taste in friends!  I can honestly say that I don’t think I would be as strong as I am now without all our friends.  The support and love I have felt over the last year or so has been a huge motivation to put away the bad moments and move forward.  Through something so sad and unfair, there have been extraordinary moments I never could have anticipated.    

So I know for a fact that there are more than 33 friends in our life right now, and I couldn’t be more thankful.  Our world would be such a lonely place without friends.  So thank you to all of our friends and family who have supported, loved and made our lives more richer.  And thank you to Jackson for making me realize it. 

Feeling Good

Today we met with our neurologist here in Spokane and I left his office feeling good for a change! 

Let me first tell you this - when we came home from Seattle I called his office to schedule an appointment and they said that he couldn’t see us for 6 weeks because of his busy schedule.  That didn’t fly with me (being the pushy mom I am) so I asked to talk to one of the nurses, who then spoke with Dr. Reggin, who got us in within a couple of weeks.  See – more advocacy paying off! 

The purpose of the appointment was to discuss taking a more aggressive stand against Jackson’s seizures.  To me, I thought it would mean that we would be discussing and adding some medications to Jackson’s regime.  In fact, Dr. Reggin did increase the dosage of the medication Jackson is on currently.  We will see how that goes in the next couple of weeks and if there are any changes.  If it doesn’t help, then we will be adding a different medication.  But what I wasn’t expecting was that we got a plan, a plan that I am very happy about.  After reading the notes that Dr. Dobyn’s (the doctor we saw in Seattle) sent him, Dr. Reggin wants to not just treat the seizures with medication, but he wants to figure out why the seizures are happening.  There has always been that question of why there is seizure activity on the left side of Jackson’s brain.  The left side is the “good” side according to the MRI.  Just as Dr. Dobyn’s was perplexed so has Dr. Reggin been.  The plan is that Dr. Reggin is going to pull all the EEG information and his notes and records and send them to the Epilepsy Center at Seattle Children’s.  He will then conference with the doctors at the Epilepsy Center and try to figure out why the seizures are happening and what we should be doing to solve that mystery.  Finally some progress and a feeling of getting some answers!  The process of doing all this will take 4-6 weeks so we should hear either right before or after Christmas what the doctors discussed and came up with.  I can handle that.  Dr. Reggin explained a couple of different tests that we may have done over in Seattle that would give us a better picture of what is happening in Jackson’s brain.  Which I would like to see done, the more knowledge we have the better.  He also mentioned a surgical procedure that Dr. Dobyn’s also said might help that would entail separating the two side of the brain from each other.  That procedure is called a corpus callostomy.  I have actually read some medical studies about this procedure and there has been some success in stopping the seizures.  Nothing is 100% guarantee and there are always side effects but it is something that may be in Jackson’s future.  The idea of brain surgery scares the crap out of me and makes me sick to my stomach just thinking about it.  But I also have to think of Jackson and what is best for him.  If brain surgery would give him a better chance, Momma’s going to have to suck it up.  So there you have it.  We have a plan, we have some good doctors on our side, and I feel that we are finally moving forward on really getting Jackson some help.  I didn’t really realize until today that I had had this feeling of just kind of being in limbo.  I’ve been watching Jackson have seizures now for 17 months.  All this time we have just been giving medicine, changing medicine, giving more medicine and hoping for the best.  Now we are going somewhere and I feel excited and happy that we are moving.  I know I have to keep in mind that after all these tests and doctor visits, in the end we just may not be able to do anything to get rid of his seizures.  That would suck but I would at least know we gave it our all.  Up until now I don’t think we have been and as a mom that bothers me.  I feel like we should have done every test in the world the first day Jackson had a seizure.  It’s a process though.  I understand that.  Jackson may have a lot of hospital and doctors appointments in the months ahead and even though he may not understand it (or like it), someday I hope I will be able to explain it to him and he will know we gave it our all for him.

On a side note, yesterday at therapy Jackson’s speech therapist was showing Jackson a book about dogs.  She pointed to a dog and said “dog”.  Jackson then said “dog”.  At least it sounded just like it.  His OT was there and heard it too.  Maybe it was just a fluke but I really think he said dog.  I told Kevin about it when he got home and he kept trying to get Jackson to say it again, which he never did.  Wishful thinking maybe, but whatever it was it was music to my ears. 

Medications and Advocacy

Before I had Jackson I was one of those people who believed that medication was a good thing.  If I was sick I would take some kind of medicine to feel better or antibiotics to heal whatever ailment I had.  I was never one of those people who practiced or really fell for the holistic medicine approach.  Now that I have a little boy who, unfortunately, is going to have a life long relationship with medication, I find my attitude toward medication changing.  When Jackson was first diagnosed we went to see the neurologist and he prescribed medication for the seizures.  I just figured the medication would stop the seizures and Jackson would be ok.  When that didn’t happen it was kind of shocking to me.  It was the first time I really had to face a situation where there was a chance medication wasn’t going to work.  I soon realized that something that has always been so simple for me wasn’t going to necessarily work for Jackson.  Now that Jackson is on his 3^rd seizure medication, I find myself having mixed feelings about medicine.  Lately I’ve been looking into alternatives to medication to help with the seizures.  At this point I’m willing to try anything reasonable to help Jackson.  If we can find a concoction of medicine that would stop these stupid seizures I am all for it.  However, what we’ve seen in the past is an alteration in Jackson’s behavior and personality with certain medications.  The medicine he is on now, Topomax, hasn’t had an effect on his personality (that we’ve noticed), and it is also helping a little with the seizures.  But last week when we were in Seattle, the doctor told us we need to get more aggressive in treating Jackson’s seizures.  Part of the desperation is that the seizures are causing more damage to Jackson’s brain and his ability to develop.  While I agree with the doctor, I’m fearful of what all these medications will do to Jackson.  I hate to think of the “cocktails” that are in his future.  I also wonder what kind of long term effects these medications could have on Jackson’s body.  We meet with the neurologist this week and will hopefully come up with a good plan to battle the seizures.  I just hope we won’t have to make a decision between medicine that could potentially stop the seizures or medication that may not stop the seizures but would give Jackson the ability to function regularly in day to day life. 

In all of this, I’m finding my role as a mother changing.  No longer do I feel that I should just listen and trust the doctors.  That old sayings “mother knows best” and “mother’s intuition” really kick in when you have to watch your child have a seizure or vomit all day.  Your role as mother turns into one of an advocate.  I think all mothers are advocates for their children, but when your child has health issues you can find yourself spending more time as an advocate than as a mom.  In the past month I have decided to stop giving Jackson medications that the doctors prescribed because (1) I didn’t think it was helping and (2) it was causing adverse affects.  I did this without consulting the doctors.  Maybe that isn’t the best way to go about it, but I live with my son and see what he is like every day and because of that I have a better perspective than any doctor out there. 

Jackson’s other main issue aside from the seizures is his spitting/throwing up.  Some days he hardly does it, other days it is a constant thing and he will go through 3-4 shirts, 5 bibs and 7 towels a day.  He has had a few tests done at the hospital – 2 gastric emptying, upper GI, lung aspiration and a scope of the GI tract.  Both of his gastric emptying tests showed that he is having prolonged digestion but everything looked normal during the scope so we don’t know why he is throwing up so much.  After the first gastric emptying and upper GI tests the GI doctor put him on the medicine called Reglan.  This was a medicine the doctor had tried to put him on once before but couldn’t because it interacted with his seizure medication at the time.  But then we switched seizure medication so we put him on the Reglan.  Jackson went through two bottles of the Reglan and we were on our 3^rd bottle when I finally admitted to myself that this medicine just wasn’t working, and while he was on it, Jackson’s seizures had gotten worse.  All of the sudden it hit me that just because the doctor told us to give the medicine to him didn’t mean we had to.  I was his mother and I should be protecting him, not following doctor’s orders.  So one day I just stopped giving it to him.  Since then I really feel that his seizures have gotten better and his spitting up hasn’t really changed.   A couple of weeks ago we did the second gastric emptying and this time the doctor prescribed Erythromycin.  It seemed like it was working for a couple of days then Jackson starting puking again.  I still gave it to him for a few days but this weekend Jackson got a diaper rash, which the pharmacist told me might be a side effect.  Jackson’s never had a diaper rash before so I was surprised.  Needless to say I stopped giving him the medicine right away.  The diaper rash is way more uncomfortable and painful for him then the throwing up.  I’m done giving him medicines for the throwing up.  I am tired of putting him through additional medical issues.  Jackson isn’t able to care for himself and he needs someone to stand up for him and say “enough is enough”.  That’s my job as Jackson’s mom and advocate. 

Healing

When Jackson was first diagnosed I searched high and low for books by special needs parents and their experiences.  I found a lot of good ones but mostly the stories were those where the parents just lived in this kind of grieving stage and just couldn’t move on.  Of course, a lot of these parents were dealing with things I haven’t (thankfully) had to deal with.  Numerous hospital stays, scary medical emergencies, g-tubes, breathing tubes, etc.  So early on I decided I was going to write a book about our journey.  One that would truly capture the highs and lows of raising a special needs kiddo.  But between all the appointments, work and life my book kind of faltered.  That’s when I got the idea for a blog a few weeks ago.  I figured it would motivate me to write and I could share our experiences with our friends and family and anyone else who was interested.  It definitely has motivated me to write.  Now that I know people are reading it, I can’t wait to share the stories of Jackson and our trials and joys.  I didn’t, however, realize how healing it was going to be for me.  My last post was a difficult one.  It took me all day to write and a lot of tears to finish.  Once I posted it, walked away from the computer, and went back to my life I realized a couple of hours later that I felt better.  I had been sad and tearful for the 4 days prior and dealing with emotional stuff that really sucked.  Posting those feelings made my shoulders feel lighter.  Now I’m realizing the blog is not just my way of sharing, it's a way to help me get through the tough times and a place I can just really say how I feel.  Being a parent is so much harder than anyone ever tells you.  Being a parent of special needs kid adds a little spice to that parent pot.  I am really glad that I have an avenue to share our story with everyone.  I am even happier that people are reading it and enjoying it.  I want other parents to see that in many ways we have the same issues, but there are additional and difficult issues that come with special needs kids.  Now when you see those special kids at Target or the grocery store maybe you will have a better understanding of what those parents are going through and you won’t just feel sorry for them (like I used to).  My blog is healing me little by little and I hope it is instilling compassion and love for everyone who reads it.  On that note, I found this little story in a book a couple of weeks ago and it really touched me.  I’m not a very religious person and I definitely have my issues with “God”, but this was kind of cool and I want to share it.  It’s called “God does work in mysterious ways” and it is written by the ever popular Erma Brombeck (I don’t know the year it was written).  Enjoy:

                Most women become mothers by accident, some by choice, a few by social pressures and a couple by habit.  This year, nearly 100,000 women will become mothers of handicapped children.  Did you ever wonder how mothers of handicapped children are chosen?

                Somehow I visualize God hovering over earth selecting His instruments for propagation with great care and deliberation.  As He observes, He instructs His angels to make notes in a giant ledger. 

                “Armstrong, Beth, son, patron saint, Matthew.  Forrest, Marjorie, daughter, patron saint, Cecilia.”

                “Rutledge, Carrie, twins, patron saint… give her Gerard.  He’s used to profanity.”

                Finally, He passes a name to an angel and smiles, “Give her a handicapped child.”

                The angel is curious. “Why this one, God? She’s so happy.”

                “Exactly,” smiles God.  “Could I give a handicapped child a mother who does not know laughter?  That would be cruel.”

                “But has she patience?” asks the angel.

                “I don’t want her to have too much patience or she will drown in a sea of self-pity and despair.  Once the shock and resentment wears off, she’ll handle it.”

                “I watched her today.  She has that feeling of self and independence in a mother.  You see, the child I’m going to give her has his own world.  She has to make it live in her world and that’s not going to be easy.”

                “But Lord, I don’t think she even believes in you.”

                God smiles.  “No matter.  I can fix that.  This one is perfect.  She has just enough selfishness.”

                The Angel gasps, “Selfishness?  Is that a virtue?”

                God nods.  “If she can’t separate herself from her child occasionally, she’ll never survive.  Yes, here is a woman whom I will bless with a child less than perfect.  She doesn’t realize it yet, but she is to be envied.  She will never take for granted a ‘spoken word’.  She will never consider a ‘step’ ordinary.  When her child says ‘Momma’ for the first time she will be present at a miracle and know it!  When she describes a tree or a sunset to her blind child, she will see it as a few people ever see my creations.

                “I will permit her to see clearly the things I see... ignorance, cruelty, prejudice… and allow her to rise above them all.  She will never be alone, I will be at her side every minute of every day of her life because she is doing my work as surely as she is here by my side.”

                “And what about her patron saint?” asks the angel, his pen poised in mid-air.

                God smiles.  “A mirror will suffice.”