Week #26 & 27 @ The Dahlhouse

Summertime is in full swing at the Dahlhouse.  I am enjoying having a more relaxed schedule.  Even within the down time of summer, we continue to have a "schedule".   Monday's find us traveling to and fro from our little community library.  I finally found it!  It is the sweetest little library and perfect for my kiddos to peruse the aisles searching for the perfect book.  Bella calls it "book shopping" and cracks me up each time she says it. 

Water fills many of our hot days. 

Because this little one LOVES water sooo much, we have decided not to set up our big pool this summer.  Instead we have opted for a smaller pool that can be emptied when finished.

However, the size of the pool does not stop the big kiddos from joining in on the activities.  Pool is a pool.  LOL.  Grace is a joy!  She and Matthew have such a special bond and Grace is an excellent helper.  I can always count on her for Matthew help.  She is growing up.  Can't.even.believe.it!

Even though it is summer, the process of fighting and advocating for my kids does not take time off.  Even on a warm Monday, you can find us in the doctor's office with double appointments because this mama has a concern.  Man...I LOVE MY BOYS!  Luke is struggling...he is such a sweet, beautiful soul.  What a privilege to be his mama.  In the midst of Luke's of trials and hard stuff....I am crazy, deeply grateful for my amazing son!  He bring such joy and how I love him and the good God that brought us together.  Pray for him if you think of him.  We've had some very hard days around these parts. 

And oh Matthew...the little person I wished for that I didn't know that I needed!  Matthew is in Infant Toddler Early Intervention.  We have therapy for him for language delays.  He also is tip toe walking. I am concerned and needed the doctor to look at him.  After an exam and four xrays that left us both sweating and crying, he was referred for a pediatric therapy evaluation.  Knowledge is power.  We will be happy if he is fine, and happy to get help if he needs it. 

I finished this book in June.  Wow!  I knew it would be a hard read...and it was.   As a mama that has had both life and death within her...that has said goodbye to three little babies I never knew...my soul needed to read this.  I needed to feel it again.  I needed to grieve a bit more.  I needed to let myself go there.  And I did.  I cried the ugly cry more than once and surprised myself that even after 15, 14 and 12 years ago of losing my babies, the memories, the pain, the dreams and hopes for these little tiny humans were still there.  I allowed myself to feel it and talk about it.  And.it.was.good.  I am glad that I read this book. 

My photobook from Shutterfly arrived.  I designed one about our anniversary trip to Hawaii.  It turned out better than I expected and I highly recommend them.

My scar from my skin cancer is healing very well.  It is better than I could have imagined!  I am very happy. 

 Everyone needs a batman in their life!

 And a baby with a cat on their heads!  Thank you Facebook messenger!!!

 BBQing at Mimi and Papa's.

 Holding on to Hope while parenting on difficult days.

Bella had the opportunity to take a Mandarin lesson through a company called Lingo Bus.  It is a partner company with the one I work for VIPKID.  She loved it!  She is obsessed with Chinese culture.  She loves Panda's, Chinese food and learning people's names in Chinese.  I heart her so!

We've been selling pizza cards as a fundraiser for 4h.  This is our new mini rex rabbit.  She is super soft.

Papa and Mimi took Luke this last weekend for an overnight at their house.  They also took him golfing!  I am hoping that Luke will be able to join the high school golf team in a couple of years.  He really loves it and I think it would be very good for him.

Finally two of my kids promoted grades/classes on Sunday!  Bella moved up to the first grade class.  And Luke graduated out of children's church on Sunday mornings.  He is now going to be a helper for the younger kids classes.  Grace is excited as well because she gets to begin going to youth group.  Tonight is her first night!

The Dahlhouse: Week #19~The Call No One Ever Wants to Get

Waiting for biopsy results,  is a nerve wracking experience.  So when the doctor's phone number flashed on my cell phone screen, I immediately knew this was not good news.  I got the call I had been terrified of getting for years.  The call that I have cancer.   He informed me that the mole I had removed off my arm was benign and one mole off my shoulder was Melanoma in situ.  In situ is classified as stage 0, meaning the cancer is sitting on the top of the skin.  It has not spread, and it is all in one place.  The treatment is surgery to remove more skin surrounding the melanoma and test for clear margins.  Once the margins are clear, the follow up treatment is more frequent skin checks.  In one five minute phone call, I found out I had cancer and was scheduled for surgery the following week.  My head was spinning.

I had a few days of a pretty good pity party.  I vacillated between being extremely thankful it was caught so early, and feeling angry and scared (mom to four kiddos). 

Tuesday, May 9, Mark and I went in for my surgery.  The doctor removed a lot more skin than I was expecting.  Here I am all marked up so the surgeon knows what is being removed.  They used a special light in marking up my skin.  My poor eyes, I had only had one break down in front of the doctor by this point. 

*NOTE: We choose not to tell our kids about my skin cancer at this point.  They know I have moles removed, as this has been happening since I was a teenager.  They knew I had have some additional skin removed but for the time being...they don't need to know.  Especially since I have two kiddos with anxiety disorders.  If you know our family personally, please do not mention this to them as they won't have any idea.  Thank you so much!

Here was my shoulder the night after the surgery.  Out of all the difficulties of this process, not being able to hold Matthew with my right arm has proved the most difficult challenge.  After the skin was removed...I found myself waiting again.  For pathology results.  Waiting to heal.  It has been a lot of waiting. 

I think that one of the most interesting lessons I have learned with all this is that life continues and moves on.  It didn't stop because I found out I have skin cancer.  I continued to teach classes, carry Matthew with one arm, go on a field trip, take the kids to a rabbit show, laugh, go out with friends. 

We even sold our Honda Odyssey during this time period as well. 

I celebrated Mother's day with this sweet girl and her class a few days after surgery.

The three olders and I went to a rabbit show at Clark County Fair Grounds. 

I even sported my 4H shirt and had a pretty good day being with my kids. 

At the end of week #19, I was still waiting on the edge of my chair to hear if things were "all clear" or if I was going to have to undergo another surgery. 

Fight

Sometimes it feels like all I do is fight.  Me.against.the.world.  Fighting for Luke's needs to met in the classroom, fighting to make sure he has the meds he needs, fighting to make certain he experiences success, and me fighting against the insurance companies right now.  Ugh.  I hate that one little phone call from Luke's occupational therapy center can send my head spinning and my stomach turning.  I wish I did a better job of just not worrying about things.  Last Wednesday, after making sure the new referral for therapy was sent over from his primary care (so he could continue), they called to say that Luke's 30 annual visits for OT were expiring and that he had met his yearly max.  He has secondary insurance, but they went on to say that it has only been covering half of all clients lately and that we were "ultimately responsible" for paying for therapy sessions if they were no covered by anyone.  GREAT!  Like we have 350.00 per session just sitting around. 

Conversations like those leave me feeling 2 ways. First...upset that Luke would have to miss therapy because apparently having 2 health insurances are NOT enough.  And second...it makes me angry!  Angry that we are once again fighting tooth and nail for what Luke needs and deserves!   I work really hard to make sure that little boy gets what he needs.  I made a promise to get him the best medical care and I have full intentions of keeping my promise! 

After 2 phone calls and countless conversations, I was able to work it out with our primary insurance.  Pending their approval, they will accept or reject our petition for more therapy sessions. 

I was talking to Mark about how it is scary to think about a world that wouldn't include therapy for Luke. Not only does Luke count on the therapists in his life, I have come to rely on the support I receive that offer me an outlet (be that a minute or two) to discuss any questions or help.  I have realized I have come to count on "village" to help meet all of Luke's needs.  When and insurance company threatens to take that away...it becomes personal! 



5 Things About Being a Special Needs Mom

Out of every 5 households, 1 child will have special needs, which can be a physical, cognitive or medical disability.  That's about 10 million children in the US.

Luke is one of those kids.

He has several disorders.  Early childhood onset glaucoma, microcephaly, ADHD, Tourette Syndrome, sensory integration difficulties and visual and auditory processing needs.  After many, many doctor's visits they have determined that there is no syndrome that links anything together, but that Luke kind of hit the lottery, so to speak, of congenital issues.

His disorders (or special needs) have caused medical and developmental problems.  He has been in physical, occupational and social therapies.  He has had 3 ear surgeries and heart surgery to close a hole in his heart, CAT scans to look at his small head, eye procedures, music therapies, and behavioral therapies.  He has been through more doctor specialists than I can count or remember.

Raising a special needs child, is a blessing and a challenge.  It is rewarding and trying.  It is inspiring and defeating.  It is like you can't have one without the other.  You take the good and the not so good.  I sometimes long to feel "normal" but have accepted that my "normal" is "not normal" and I am ok with that.  Many people will tell me what an excellent job I do with Luke, and how blessed he is to have parents "like us" but I often feel I am just so blessed to have him in my life.  I don't feel like I am anything special, and most days I feel that I am just "not good enough".  I yelled when I shouldn't have or didn't do enough activities with him.  I fail on so many levels, but I am human.  I am a mom.  A special needs mom.  Mainly though I just like to be known as...Luke's mom...(and Grace's and Bella's).  As a mom of children with special needs, I often feel a myriad of emotions.  I took this idea from another blog and wanted to share MY "real" honest thoughts about how I feel as a special needs mom.  Maybe you can gain some insight into how it is to be a special needs mom. :)

1.  I am tired...just being a mom is exhausting.  Especially to little ones.  However, parenting a special needs child takes things to another level of being tired.  On top of the "normal" parenting things you do with your kiddos you add into your schedule therapies.  While he may attend formal therapy once a week, there is practice and therapies to do at home several times a week.  We may visit doctors and specialists several times a month.  In February Luke visited the orthodontist 5 times.  In March so far he has been to OHSU for his eyes.  He will also go visit his primary care doctor this month too.  If its not the medical it is the educational.  I have had my share of battles with the IEP team and fighting with them to make sure that he is receiving what is written into his IEP.  There is a whole week in October I will never be getting back.  There is advocating for him in all realms of life and making sure each "player" is performing their best to give Luke everything he deserves and needs.  The emotional toll causes one to be tired.  I am a worrier by nature and I spend many hours thinking about Luke and trying to come up with possible solutions, new therapies, researching, praying. 

2.  I am jealous...I almost didn't put this one down.  I thought about it a lot and sadly it is SO true.  I would never want to admit this to anyone or let anyone see this side of me.  But I am being HONEST here. :) I am sure my mom sees it, but she displays such grace and never "lets on" that she knows.  I feel the pains of jealousy when I see boys Luke's age able to go on a retreat at church, and know that I couldn't send him without Mark and I.  I feel jealous of mom's whose children can play regular sports or have children that don't always finish last with physical activities.  I feel jealous Luke can't attend a private Christian School because they cannot meet his needs.  I feel jealous when other mom's can go away for the weekend without children.  (I know this sounds a little selfish, but I am not perfect and just being REAL.)  Recently...one of my closest friends went to Disneyland with her husband for the weekend, and when she text me I cried for 10 minutes (how pathetic is that?).  It wasn't because I was upset or mad.  I was very happy she got to go, as she had been wanting to for a long time..But I was just jealous.  I had the realization that "even if we were able to go financially" I couldn't...because I don't have anyone that I can leave all 3 kids with.  I don't know of anyone that would be able to handle the dynamics of the 3 of mine for 1 night away...let alone two or three.  Last time Mark and I went on a date with no children with us, (which was three months ago for 3 hours) I was so worried about the kids (mainly Luke) that I couldn't even enjoy myself.  My stomach was in knots.  Luke can throw some rippin tantrums, and has a difficult time with change in routine.  He can melt down easily when he is feeling anxious.  How did it get this way?  The last time Mark and I went away for 1 night, just the 2 of us was November 2009.  We could SO use a break to recharge, re coop, reconnect, but I don't know how to do that.  I am jealous of those that can and do.  Our relationship could use just some "us" time that doesn't include hospital food or going to the latest "specialist" together (but don't get me wrong...I am so grateful he is there).


3.  I feel alone... I went to a MOMS group at the beginning of this year.  It was a sweet group of ladies, very welcoming, but I only went once.  When I shared "my" story, of becoming a mom, I had 5 other moms at the table looking back at me like "deer in headlights." They weren't ready for the truth about foster care, special needs, adoption, medications, therapies, medical doctors, specialists.  They were more on the level of "so which grocery store do shop at?" and "what are your favorite brand of diapers?"  I am not saying this is bad...it is a wonderful group of mommy's...it was just not the "connection" I was looking for.  Which leads me to this point of "I feel alone."  Most days I spend completely alone (with my kids).  Marks works a weird schedule these days, so my really only adult contact is my daily phone call to my mom, connection with a therapist, a school teacher, a doctor or specialist.  I could use the support of other moms with children who have the same type of issues....I am sure there is some group out there...just haven't found it yet.

4. I am human...I am not a saint, even though well meaning people do try and tell me I am.  I have bad days, off days, days I feel like I am failing and think I am not doing a good job.  Being Luke's mom has really re-shaped my life in many, many good ways.  He has helped me discover who I really am.  I have realized that I am a lot stronger than what I thought.  I have learned to be pushy, confrontational when I need to be, how to fight, speak and advocate for those who cannot.  I still have dreams of my own...things I would like to accomplish.  A few dreams that have lingered since before I became Luke's mom.  Memories of the past.  I still love to get my nails done, shop and visit Starbucks.  Music helps...I love my iPod. 

5. I am scared...This one is difficult to admit too.  While I don't dwell on this thought too much, it is part of raising a child with special needs.  I am scared that I won't do something or find the right therapy for him.  I am scared he is going to be blind someday.  I am scared I won't know the right thing to say when we really talk about adoption and his history someday when he asks, if he asks?  I am scared I am not doing enough or that I am doing too much?  I am scared when he goes to school that other kids are mean to him, or he doesn't eat his lunch cause he talks too much, or that he isn't following the rules.  I am scared that time is going by too quickly...moments are passing I won't ever get back.  Have I been enough? done enough? loved enough? advocated enough? taught enough? played enough?

My life is forever changed (for the better) by raising Luke.  He blesses me in ways that I can't explain.  When I look into his eyes, and I see how happy he is, and then I think of the alternative (which I can't describe), I am blessed....a hundred times blessed...to call him mine.  Every time I break up an argument, model appropriate behavior, remind him "he is not the parent", tell him "no" or the million other things I do, I remember that God according to His plan choose us for that little boy.  I don't take that lightly.  I was called to this "position"...to take up my weapon and fight for those who cannot.  I know that the mere existence of Luke is a promise that God has a BIG plan for his life.  I really believe it.  So even though it may not look so pretty in the trenches, I am fighting.  I am real.  I am HIS mom. 

Luke's Bad Day

(Luke @ 3 years old)

I feel as though I am constantly fighting. Fighting for Luke, fighting doctor's office for reports, fighting government agencies, fighting with him to take his meds, fighting the school for them to do their part....I'm tired, so tired....and yet the fight continues. It has to continue. It doesn't stop.

Luke had a bad day yesterday. So, now I am fighting with teachers. I thought sending Luke to public school would get him the services he so desperately needed. Boy..was I wrong. I spent hours talking with school officials about my concerns. About how Luke was different, about how I was worried about him being bullied and having no friends, about his tendency to be bossy and argue. They "assured" me that they had strategies in place to help him deal with these things while they re-evaluated him. Yesterday, Luke was embarressed by his teacher in front of the whole classroom because of social skills that Luke doesn't yet have. He essentially got "in trouble" for having a giving heart. The teacher called me to tell me this and when she did I just laughed because I didn't see how it was big deal. She told me that she instructed class not to "accept" things from Luke anymore. Apparently, Luke gave away all the mechanical pencils I bought for him at Target. Big deal. When I talked to Luke about this, he told me "Mom I was so embarrassed that I couldn't even talk or look at anybody. I wanted to run away." My baby!!! I am the horrible mother that put him in this situation. Can you believe it? Because somehow I thought this was the magic class, the magic pill the magic whatever that would help him and solve all my problems. What a naive attitude right? Let's just face it...I was delusional :)

Now I have a little boy who HATES school. He cries, refuses to go out to the bus stop and even runs and hides. He cries to me "mom I have NO friends. Nobody likes me. I hate school." What is a mama to do? Here he has adhd, microcephaly, tourettes, glaucoma, sensory processing disorder, etc. and I fed him to the wolves. Mark and I have been round and round and discussing everything. What am I to do? How do I find something, some program that is a good fit for LUKE. My heart is breaking. I should be able to figure this out, but I am stumped. There is just one thing I know for sure. This can't keep going on. Something has to change, or my sweet spirited, loving little boy is going to be crushed. Help.