5 Things About Being A Speical Needs Mom Revisited

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.  Grace is one of those kids.

Luke 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.

Grace has obsessive compulsive disorder.  We have been through a lot of testing to rule out certain things.  She struggles with academics but gives her best effort.  At the onset of her diagnosis we went through two and half years of therapy to help her with the anxiety. 

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 Grace, and how blessed they are to have parents "like us" but I often feel I am just so blessed to have them 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 them.  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 mom and Bella's mom and Matthew's mom.  As a mom of children with special needs, I often feel a myriad of emotions.  I wrote a post like this one four years ago and I wanted to update where I am at now and 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 special needs children takes things to another level of being tired.  On top of the "normal" parenting things you do with your kiddos, you add therapies into your schedule.  While they may attend formal therapy once a week, there is practice and things to do at home several times a week.  We may visit doctors and specialists several times a month.  Sometimes I feel I live at the orthodontists office, especially now that Luke has braces.  As a kiddo with sensory issues, Luke often has a difficult time with all the weird stuff in his mouth.  Last month, we had a big check up on Luke's eyes at OHSU.  Matthew had a 9 month check up, and there were a slew of other doctor appointments including chest x-ray's for Bella.  If its not the medical needs it is the educational needs.  I have been fighting (what seems like a very long time) to re-instate Luke's IEP (Individual Educational Plan).  I finally have a meeting to begin the evaluation process on Monday.  I keep emailing, I keep advocating, I keep fighting even when there seems to be no fight left in me.  I am ALWAYS advocating for him and Grace and Bella in all realms of life and making sure each child receives what they deserve and need.  The NEW news is that Matthew is about to undergo a full developmental evaluation due to the fact he has some issues that have concerned me (I've only told Mark and my mom).  I took him to a screening and he is being referred on to the Infant Toddler Early Intervention Program.  And while I am thankful we live in a place that has such programs, I am concerned about the thought of added therapies.  The emotional toll of all I carry, causes me to be tired.  I am a worrier by nature and I spend many hours thinking about my kids and trying to come up with possible solutions, new therapies, researching, praying.  Some of my recent thoughts include: what new foods can I give Matthew to help with his sensory issues, what can I do to encourage him to try saying new sounds, how can I help Grace and Luke be more organized...(just to name a couple). 

 2.  I am jealous...I almost didn't put this one down...again.  You can read my post four years ago about what I was struggling with here.  I thought about this again, and sadly it is still SO true.  I don't want to admit that I am jealous, and I thought perhaps in the last four years I have grown and this no longer applies.  But I am being HONEST here.  I feel jealous of moms whose kids can play on typical sports teams, school sports teams or have children that don't always finish last with physical activity.  I feel jealous of moms who don't have sit beside there children and coax them to try their homework, and then don't have to email all their teachers to let them know what they didn't complete.   I feel jealous of moms that can go away for a weekend.  I tried to go away for two nights to an adoption retreat.  Oh how I needed it.  But, I made it one night before one of my children ended up in the ER and I came home.  I was so glad they were ok, but I cried for a couple days because I felt so disappointed that something I looked forward to for so long (the retreat) was over for another year.  I am jealous of moms that have a dozen babysitters on speed dial (or even one).  I get that we have four kids and it is a lot, but having a babysitter that was available would be amazing.  I keep praying about this.  My kids are so wonderful, but they can be difficult.  My mom has been very helpful watching the kids and offering to watch the kids (which I appreciate more than I can express), but she works full time and is tired and sometimes we need someone last minute.  In the last four years, I have also experienced jealousy of moms who still have there fathers.  I miss mine everyday.  Anytime I watch a father hug his daughter, it's there...jealousy.  I just plain miss mine.  He was always full of great insight, help and support.  I grieve still that he isn't here to have a relationship with his grandbabies.  He would have been and amazing grandpa.

3.  I feel alone...  Most days I spend completely alone (with my kids).  I am more comfortable in this role than I was four years ago, but I would still echo as a special needs mom I feel alone.  Mark works a weird schedule these days, so when he goes to work in the morning I don't have much contact with anyone who isn't a therapist, a school teacher, a doctor or specialist.  I try and visit a friend once a week, but it doesn't always happen.  I could use the support of other moms with children who have the same type of issues.  That is why the Called to Love Retreat has been so wonderful for me.  I can physically see that I am NOT the ONLY one who is walking this path.  We recently began attending a new church, and I am happy to report that there is another mama who is walking my same path at church. Which is an amazing blessing! I am hopeful that perhaps we can connect more because I could sure use her friendship.   

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 a special needs mom has really re-shaped my life in many, many good ways.  Luke and Grace have 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.  In the past four years, I have also learned that I have limitations, and it is ok to admit when you need help.  I am in therapy currently for anxiety/depression, and I sought out the help of a doctor and I am on medication.  I am human.  And I am ok with it.  Both therapy and medication have helped me in a huge way.  I no longer spend everyday crying, I don't feel like I am the verge of a breakdown, I am not in a constant state of worry, and I am not over analyzing every weird twinge or symptom in my body.  I still have dreams of things I would like to accomplish, but for now I would settle for reading a book, painting or going to the spa. (A mom can dream right?)

5. I am scared...This one is difficult to admit too...still.  While I don't dwell on this thought too often, it is part of raising children with special needs.  I am scared that I won't do something or find the right therapy for them.  I am scared Luke is going to be blind someday due to his glaucoma.  I am scared I won't know the right things to say when we talk about their adoptions or know how to answers their questions?  I am scared I am not doing enough or that I am doing too much?  I am scared when Luke 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 worry Grace isn't turning her work in or she is distracted.   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 and Grace (and Bella and Matthew too).  They bless me in ways that I can't explain.  When I look into Luke and Grace's eyes, and I see how happy they are, and then I think of the alternative (which I can't describe), I am blessed....a hundred times blessed...to call them all mine.  Every time I break up an argument, model appropriate behavior, remind him "he is not the parent", ask her to "finish the job," tell them "no" or the million other things I do, I remember that God according to His plan choose us for them.  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 and Grace is a promise that God has a BIG plan for their lives.  I really believe it.  So even though it may not look so pretty in the trenches, I am there, I am fighting.  I am real.  I am THEIR mom. 

Rest In Peace Sweet Dad of Mine

Thirteen years ago...you breathed your last breath and let go.  How is it possible that it has been 13 years already!  Seems like forever and a minute all at the same time.  I have been anticipating this year's anniversary for awhile...at least my subconscious has been preparing.  You've appeared in my dreams, memories and I've noticed I have been extra emotional this past month.  Some years the anniversary of your death comes and I remember the day (as always) and miss you, think of you and move on, but some anniversaries come and they tear at my heart, and the grief feels raw for a moment and I cry at all you've missed these past 13 years.   This year's anniversary is the later. 

Recently I've thought a lot about the type of father you were.  You were involved in my life and you included me in yours.  You showed up and participated.  You drove me to school, piano lessons, chaperoned field trips, took my shopping, cheered me on at sporting events, listened to endless choir concerts.  You welcomed my friends into our home and I always thought of you and mom as the "cool" parents.  Even though you were a pastor and we were a Christian family, we were allowed to dress up and go trick-or-treating on Halloween, go to school dances, hang out at friends houses.  You took me on vacations and bought me a first car.  You loved mom.  Some of my best memories I have of you and her, is dancing in the living room on Christmas Eves to Kenny G.  Christmas was always magical at our home.  Try as I might, there is no replicating it for my kids.  We have wonderful Christmases but they are different now.  Different now that you are gone.

We sold our first home this past year.  It was very hard for me to decide to move.  Partially because you helped us buy our first home.  You helped us through the process and renovating it.  Selling it felt like losing a part of you.  However, with our ever growing family, it became necessary to let it go.  So after thinking a long time about how to include you in our new home, I finally came up with an idea.  At the end of the hallway, I hung your picture up.  The one I have had since your memorial service 13 years ago.  Above your picture is a quote from your favorite passage of scripture on a canvas (Psalm 27:1).  I thought you would like it here.  I joke that you have a great vantage point to watch the kids come and go and grow up.  You watched Matthew crawl down that hallway for the first time a few months ago, and you watch the kids enter and exit the bathroom everyday while brushing their teeth for school.  You've watched a myriad of kids go in and out and in and out the garage door with bike helmets, scooters and skinned knees, and you've seen me carry the central vac hose in and out probably a gazillion times.  Every time I pass by your picture, I smile.  I thought it might bring me sadness, but I actually enjoy knowing where I can see your smiling face.  So there you are on the wall watching all the craziness that is the Dahlhouse!

Rest in peace my sweet dad...I love you more than any words could ever say...xoxoxoxo

Baby Wearing Dad

Seriously can't get over how cute this picture is!!!  It is a side-by-side comparison of Miss B and Man Cub.  Miss B (2010) and Man Cub (2016).  They were both 5 months at the Clark County Fair. 

Father's Day Without My Dad...

 

 

Every June, when the Father's day cards fill the store shelves, like Target and Walmart and even Safeway, I purposefully find myself avoiding them.  I pick up the cards we need, but usually I use the kiddos as a buffer between me and the cards.  "Which one do you think grandpa will like?  What about daddy?" I find myself saying these things.  I try not to let my mind "go there" and remember that it is once again another father's day that I can't tell "mine" all the things I want to... or even just once more how much I loved him, appreciated him, and valued him. 

This year I found myself walking down the aisle of father's day cards by myself.  I was looking at all the titles and choices and decided that this year I was going to buy my father a card.  I stood there for a while trying to decide which would be the best for him, fully knowing I couldn't give it to him.  Yes, I stood there in the middle of Safeway with tears streaming down my cheeks thinking of another Father's Day without him.  Yep...I bought my father whose been dead for almost 10 years a father's day card filled it out and wrote his name across the top.  I have no grave to lay it at because his ashes are scattered off the shores of a Maui beach, so it is in my top drawer of my night stand where I keep some pictures of him. 

                                                                (Letting dad go...at sunset off the

                                                                  beach at the Royal Lahina).

 



I miss him. Almost 10 years ago, I said one final good-bye to my dad.  He hugged me at the bottom of the stairs, told me he loved me and kissed me on my cheek.  As he ascended the stair case, I watched unknowingly the last time I would ever see my dad. He was young, at the age of 52, still a lifetime to live, places to go, babies to hold...but it was not meant to be. 

I really miss what a good friend he was.  Not only to everyone he met, but to me and my brother David.  He always made time for us, loved to chat and talk to us on the phone and was always up for an adventure.  I loved that he appreciated our individual interests and supported us.  I know he would have done the same for his grandchildren.  I feel much of my grief is surrounded by the fact that my kiddos never knew him.  He had so much to offer and he gave to so many.  I know his legacy lives on in David and I. 

 

 

This year on Father's Day weekend, we were able to spend it with my family celebrating my grandfather's 80th birthday.  I was so happy to give my kids a family experience that reminded me of the ones that I had as child.  Aunts and uncles and cousins and grandma's and grandpa's.  It is truly a great legacy to have.  My only wish was that my father was there to share it too.  His shoes remain unfilled (as they will always be). 

 

 

                      (Papa and his great-grandkids at his 80th birthday)

 



So Happy Father's Day Dad!  Thank you for living an incredible life, for leaving a legacy and for loving me.  Thank you for loving people more than stuff, having a FAITH that was real, and encouraging me to follow the plan in life that God had for me.  I'm passing that on to my 3 babies here, while I know you are watching my 3 babies in heaven.  XOXO

 

Love,

Me

 



Updates...

It's the end of the month...time for updates!

Luke is so TALL!  Every time I hug the little guy, I swear he grows another inch!  During May he returned back to occupational therapy at Legacy Salmon Creek.  It is amazing how a month back on track has effected him in such a positive way.  He is cooperating more, sensory behaviors have lessened to some degree, he is wearing his compression shirt and is tolerating 15 minutes of iLs (our listening program) a day.  This a HUGE improvement from the boy who refused and threw a BIG fit if I put the headphones on him.  The month also brought an intake for counseling to help me and Luke at home.  He played several awesome baseball games, and he took a field trip to Fort Vancouver.  Luke is getting ready to earn his green belt in karate.  His eyes are stable for now.  We have another appointment at Casey Eye at the end of June.  The doctor is planning on giving him another visual field test sometime this summer. 

Grace is doing very well.  She is still enjoying her pierced ears, although I have to admit she loves to go through earrings. :)  She has been getting ready for her big ballet showcase in June.  Her dance class is tapping to the song "It takes two."  It should be really cute!  We just had her dance pictures taken yesterday.  Nothing like 12 girls in red lipstick :)  She is doing well in school and despite setbacks in reading she has been catching up to grade level.  I attended her 1st grade music performance in May and watched her sing her little heart out and twirled her ribbon.  She shinned!  Grace is anxiously awaiting the return of her speech therapist (who has been out on maternity leave) so she can attend therapy at the same time as Luke. 

 This little pixie has been acting "2"!!! This past month she has mastered the art of screaming at the top of her lungs when she doesn't get her way, throws her self on the floor and yells "it's not fair", and has eaten more fruit snacks than I can count.  She is picking up words so quickly and communicating with me all the time.  Her favorite activity this month so far has been going to the "mailbox" so she can open the box with the key.  This ususally goes on until I drag her screaming out of the post office. 

This month brought me a lot of appointments for the kids and myself.  There was not one week that did not include at least one medical and one therapy appointment.

I found out recently that Luke's teacher (whom I adore) will not be looping up to 4th grade (like everyone had been telling me she would be).  I was crushed and I cried.  I actually began thinking that this summer I could relax and not worry about what the next school year would hold for Luke.  I could enter a year and have the teacher know my son and my son know the teacher.  There would be a relationship established and the teaching and learning styles known.  The thought of having to introduce another teacher to Luke and begin the fight all over for his needs next fall is a daunting task for me.  I was looking forward to having a break from the "advocational" role this next school year, but it's not to be.  Sometimes the fighting is non-stop.  Today I just have a bad attitude and it doesn't seem fair.  I know life isn't fair, but today I just want it to be.

This has led to me having trouble sleeping.  I have a difficult time falling asleep when Mark is gone.  My sleeping patterns are way off.  He has been gone probably at least half the nights in the last month.  It gets lonely a lot.  I try and keep my kids as the sole focus and count my blessings to keep a positive attitude, but I must admit I don't always do this.  I am certain I yelled at the kids when the windows were open and the neighbors heard my sin.  Sometimes moms just yell.  I hate that.  I read that when you yell it only shows that "no one is in control."  I could use prayers and support.

Mark's activities consist of work, president of the deacon board at church, helping our neighbor build a room in their garage, hiking Dog Mountain, poker night.  I don't know how he does it.  But I am glad he is a better time manager than I.  I am working on it.  When everything boils down...I.just.miss.him.alot!!!

Farewell...

8 years ago I said one final good-bye to my dad.  He hugged me at the bottom of the stairs, told me he loved me and kissed me on my cheek.  As he ascended the stair case, I watched unknowingly the last time I would ever see my dad. He was young, at the age of 52, still a lifetime to live, places to go, babies to hold...but it was not meant to be. 

After he passed, my mom told me that while he was in the ICU, the sun shone bright through the windows and onto his face.  She went to close the blinds, but he stopped her.  He wanted to feel the warmth on his face.  He loved the sun.

Yesterday, while I was driving the kids up to our church, the sun was so bright and warm on my face, I couldn't help but think of my dad somehow reaching out in the only way he can.  And of course I had to stifle the tears.  The older I get...the more I miss him, the more I realize what he is missing, and how much I still need him.  The hole left from his passing will always remain void.  There is no substitution. 

The end of this month, my dad will finally make it to his final resting place.  His ashes will be scattered in the waters off of the beach at the Royal Lahina, Maui.  My grandmother's ashes were scattered in the same place several years ago.  There is no better place for my dad to be.  He loved Hawaii, he loved the sun. There is no other magical place like Hawaii.  It is captivating, beautiful, peaceful, serene. 

I could go and on and on about my dad, but I am already a blubbering mess and the font is blurry.  I will leave you with this song a sweet friend sent me today.  I love the band MercyMe. 

So...farewell dad...another year.  You are truly missed by so many.  Your time cut short, but your influence will forever shape the lives of the individuals you touched.  Love to you always...ME

"You're in a better place, I've heard a thousand times
And at least a thousand times I've rejoiced for you
But the reason why I'm broken, the reason why I cry
Is how long must I wait to be with you

I close my eyes and I see your face
If home's where my heart is then I'm out of place
Lord, won't you give me strength to make it through somehow
I've never been more homesick than now

Help me Lord cause I don't understand your ways
The reason why I wonder if I'll ever know
But, even if you showed me, the hurt would be the same
Cause I'm still here so far away from home

I close my eyes and I see your face
If home's where my heart is then I'm out of place
Lord, won't you give me strength to make it through somehow
I've never been more homesick than now

In Christ, there are no goodbye
And in Christ, there is no end
So I'll hold onto Jesus with all that I have
To see you again
To see you again

And I close my eyes and I see your face
If home's where my heart is then I'm out of place
Lord, won't you give me strength to make it through somehow
Won't you give me strength to make it through somehow
Won't you give me strength to make it through somehow

I've never been more homesick than now"

He Would Have Been...

60 years old today...(My Dad) Rev. Neal L. Nyhoff.  It's been almost 8 years now that he has been gone.  I have been thinking about him a lot lately, which is normal...grief often comes in waves.  For a long time things will be fine, and then for a while you think about it a lot.  I have known his birthday was coming for a while.  I mark it on every calendar I have.  I miss him.

I was driving home last night from my mom's house...after visiting with my aunt and uncle...thinking about the year I wrote his birthday down wrong and missed it.  I put it as the 28th and not the 24th.  I never called him that year on his birthday and I hated that I did that.  I wish I could do that over again.  So many more conversations we could have had.  So many more things we could have done.  I miss him.

Lately, I have been thinking a lot about his ministry, his legacy and work that he did to serve others.  I don't have many possessions of my dad's, but last night my mom gave me something wonderful.  It was his 25 years of service pin as a minister.  He spent 25 years as a minister of the Foursquare Church!  He was presented this award at the Foursquare National Convention in Hawaii in 2000 (a perfect place for the honor).  I miss him.

Among this bible, pin and some mementos I don't have too many of my dad's things....but that is ok...I have the things that you can't put a price on or hold in your hand.  I have his HEART for serving others, his COMPASSION for those in need, a BIBLICAL foundation and an OWNERSHIP of my FAITH.  It was because of his ministry that I taught Sunday School and developed my LOVE and PASSION for children.  I LEARNED so many things from my dad by just watching (which is how they say kids learn so many things). I miss him.

My parents valued EDUCATION and PUSHED me to achieve things that had lasting VALUE.  They
SUPPORTED me in my DECISIONS.  The day I graduated from Washington State University was a GREAT day! I held a little piece of each of them as I walked across the stage and accepted my degree.  Lately, though, I have been pondering the thought of getting my pastoral license.  Not that I have any idea how I would go about it, or that I have plans to go into full-time ministry.  But there is a part of me that would love to study the bible in greater depths, to follow the legacy of my father and have a connection with a part of who he was.  I know that I don't need a license to do that (to follow his legacy and feel connected) but it is something I think about. :)  I miss him.

So HAPPY BIRTHDAY DAD!!! I wish we could have had a BIG party....I am sure you wouldn't have been thrilled about turning 60!  Heck...I remember when you turned 40 and the big party we had with the church people.  That seemed old then (and now I am 8 years away from being uhmmmm 40).  I miss you.

Thank you for finding our home.  It took a lot of vision (and you helping me see past the work) to make this house a home.  I don't know if I could ever move out because of the connection I feel with this place and you.  Thanks for your ear, that was always available to listen...and your voice that sometimes did more talking than necessary :) hehehe. Thanks to you and Mom for helping make and mold me into who I am today.  I miss you.

And THANK YOU to the LORD, who made this angelic little being, that is a constant reminder of "you"!  Most people can't figure out who she looks like (some say Mark, some say me) but in all honesty she looks like YOU!!! God has a sense a HUMOR.  Even last night on Skype, David said she has YOUR hair and head shape.  Too funny!

So HAPPY BIRTHDAY DAD!  Even though I am sure you don't celebrate birthdays in HEAVEN.  Or if you do...it is better than any party I could ever plan (and I can plan a party!) I love you! And keep watch over my 3 babies.