Down Syndrome

Raising special needs kids is a whirlwind, a roller coaster, a journey.  I am learning more and more that it is an adventure that will most likely never have an ending point.  I will never come to a time where I say "this is it!  I have figured it out!"  This past week was no exception to that thought.  It was a ROLLER COASTER!  I am always "attempting" to find some sort of balance, peace, fairness,...unfortunately in a world that is not fair, or peaceful and at times very unbalanced. 

It was a typical Wednesday before Thanksgiving...last minute meal prep, a trip to Fred Meyer, a 2 year old that wanted nothing more than to be held.  A 7 year old that marches to the beat of her own drum, and a 9 year old that we attempt to keep on some sort of schedule during "non" school days. 

That afternoon I went out to the mailbox and was greeted by a letter from the Division of Developmental Disabilities.  As part of Bella's IFSP, they had me sign paperwork to apply for DDD services because she has a documented developmental delay.  I was shocked that the letter said that she was eligible because her delays are not that severe.  I read further into the letter and it said that she qualified based on the fact that she had Down Syndrome.  That is was documented by a physician.  It further stated that her syndrome was so severe that she couldn't participate in an evaluation and that she qualified for "Intensive Medical Home Care."  Basically nursing services.  Two thoughts ran through my head.  1) Some sweet baby with Down Syndrome got their paperwork mixed up with hers or 2) that the Infant Toddler Early Intervention is scamming a way to get more money.  I hope the first is correct.  Of course, on Wednesday before the holiday there was nothing I could do.  Even though I know that it is not true...to see her name at the top of this paperwork was really difficult for me.  I wanted nothing more than for it to reflect the truth.  I know in time it will all get sorted out, but in the meantime it was something that I just had to "let go". 

The next event that occurred was more personal for myself.  It reflects the challenges and struggles of being a mother of special needs children.  If you haven't read my honest thoughts on what it feels like to be a special needs mom read it here 5 Things About Being a Special Needs Mom. 

Church has been a difficult subject for me since my father passed away.  My entire life he was a pastor.  The Rev. Neal L. Nyhoff.  I imagined my entire life in his church.  My kids growing up, myself growing up.  But it was a dream that would never come to be.  Since 2005, we have been at Mountain View Christian Center.  It has been a good place to be.  My kids enjoy it and we have found a home.  I know though that it will never be what it once was in my dad's church. 

For two and half years, I have been with Bella at church.  She has been the only baby in nursery.  Her and I have spent almost every Sunday since she was born together in church.  One because the church is small, and two because of her social delays and intense fear of being left by me.  It has been a good time together, but especially lately, it would be nice to drop her off in the preschool class and be a grown up for an hour.  I have been sensitive to her needs though, and have not pushed her too far.  This has meant that aside from me teaching her class one time a month, I do not have a ministry in the church.  This is difficult for me because in the past I have been very involved. 

I had talked with Mark about seeing how he felt about me being involved with the music ministry at our church once a month.  I was really excited about the possibility of ministering through music and getting a break from nursery duty. I didn't even care in what avenue I was used...piano, additional singer, special number...it didn't matter.  I stepped out and put myself out there...only to be disappointed.  They didn't need any help currently.  

Things are planned and I understand that.  I can only imagine that I don't look very committed to anyone at church.  They rarely see me.  But I am there.  I am sitting on the floor in nursery or preschool playing ball, or dolls with a 2 year old that has social and sensory delays.  Or I am sitting in the van with one of my older children that refused to wear their shoes, or had a melt down previous to coming to church. 

I know that I am not punctual for church most of the time.  We often blow through the door 5 minutes after church begins.  And I can see how anyone can think "hey...if they can't make it to church on time...I can't count on them for ____________(insert anything here.)  What they don't see is the intense choreographed dance of getting my kiddos dressed, eating, hair combed and out the door.  Any of those 3 things can send them into a sensory break down. 

So...yes...I can see how I look...uncommitted, and unable to count on me.  I have to admit and be honest that I was disappointed not to be able to minister through music at our church currently.  As a mom of special needs kids...I could really use an outlet like that.  Something that doesn't involve kids at all...for an hour once a month. 

My wish is that people would see my unwavering commitment to my children.  They would watch me as I balance 5 therapies in a week, never missing a beat.  Cry with their therapists, strive for the next intervention, never giving up...never wavering.  They would view my stability as I manage a home, therapies, medical appointments, a family.  As I serve...day after day after day.  Looking inside our home to see that the very existence of our house is a place that meets the diverse needs of our children.  That our living room is now a therapy space.  That the blankets on my son's bed are special ordered to meet his needs.  My commit is unmovable.  My faith unshakable to the point that I raised 2000 dollars for a therapy intervention for my children.  To know that whatever happens... my children are my heart, my life.  They would watch as I never miss a medical appointment, advocate for financial help so that I don't have to work full time, and pray over my kids constantly.  So...you may not see me in the sanctuary at church, or singing or playing the piano with the music team, but I am there.  I am committed and I am ministering to the 3 little people God has given me. 

After the initial disappointment, Mark and I talked...my ministry is not confined to 1 hour a month, but my ministry is 24 hours a day, 7 days a week. It is the ministry I took on, when I said "yes" to a 13 month old Luke, and a 13 month old Grace, and when I heard Bella cry for the first time.  I was thinking this weekend as I have been processing this news.  I was reminded of something my youth pastor, Luke Gillock taught me so many years ago.  He shared a quote that has stuck with me and comes to mind in times like these....

"It is not the critic who counts: not the man who points out how the strong man stumbles, or where the doer of deeds could have done them better.  The credit belongs to the man who is actually in the arena, whose face is marred by dust and sweat and blood, who strives valiantly; who errs and comes short again and again; because there is not effort without error and shortcomings; but who does actually strive to do the deed; who knows the great enthusiasms, the great devotion, who spends himself in a worthy cause, who at the best knows in the end the triumph of high achievement and who at the worst, if he fails, at least he fails while daring greatly.  So that his place shall never be with those cold and timid souls who know neither victory or defeat." ~Theodore Roosevelt

Blessing

An unexpected blessing found its way into my kitchen this weekend.  It was a happy surprise that has left me smiling all weekend.  Every once in awhile, on this crazy journey of "life" a blessing comes along that reminds me that God cares about the "little" things.  I am so thankful today for an ice maker!  I know....I know...that sounds crazy but for the past 5 years I have been either making ice or buying the bags and dumping it into the ice bin "pretending" that the ice maker really worked!  So this weekend, every time I heard the ice maker drop ice into the bin, or the water line fill up the ice cube trays I danced in the kitchen, much to my kiddos delight...who thought I was absolutely hysterical, laughed and then joined with me dancing in the kitchen.  Who would have thought ice would bring such JOY? 

Currently I have 2 refrigerators sitting in my kitchen.  Mark and I talked about what to do with our old Kitchenaid refrigerator.  We decided that we wanted to give it away to someone who needed a refrigerator.  Besides the broken ice maker, it works/runs great.  I took pictures of it and posted it on Facebook.  It lasted 2 minutes before there was a reply...actually there were several replies.  I was humbled by how many people could use a refrigerator and humbled by how unbelievable it seemed to others that we would give it away. 

Luke was sitting on my lap tonight and we were talking about the refrigerators.  I was saying what an awesome blessing it was to get the new refrigerator.  He wanted to know how much it cost.  I told him it was a gift so it cost no money.  He said "score!"  I told him the family that would be getting our white refrigerator (he knows them).  I told him that since we were blessed with a new refrigerator that mommy and daddy wanted to bless someone else.  We talked about how life sometimes is not about money or how much we have.  Sometimes the greater reward is in doing something generous or kind.  Luke then proceeded to tell me that we needed give money away to others.  He has incredibly kind heart!  It was a great conversation and a great weekend!  Thanksgiving can come in the shape of a refrigerator. 

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! 



Here

I know...I know...I have been absent for awhile.  To be honest, I have been so incredibly busy that blogging has been low on the priority list.  Then, the times I have sat down to write, I have been experiencing a bit of writers block.  Life is still happening around here, but I haven't seemed to be able to find the right words. 

Last month was full of our traditional "fall" activities.  There were 2 visits to the pumpkin patch, school picture days, school conferences, Halloween fun and many therapies and appointments.

I have finally adjusted well to work.  It took a good 8 weeks.  I finally feel comfortable in my position and confident in the work I am doing with my students and families.  I was BLESSED to be able to rearrange my schedule to have Fridays off now.  I traded my hours on Friday for my hours on Monday.  It has made a BIG difference in my outlook and I get to have a whole day to just be mommy.  My heart is very HAPPY!

Mark excepted a "mentor" position at work.  He was chosen for his ability to teach, lead and relate to others.  I am very proud of him.  He is soooo HAPPY working a "normal" predictable schedule again.  So am I!

The 3 kiddos are doing well.  Luke is doing well in school.  He is still attending his therapies and his medical appointments at Casey Eye OHSU.  His eyes continue to be stable.  He will have a BIG appointment this coming January.  They will track his peripherally vision to see if he has lost anything in this past year.  Nervous.  Grace is doing well.  She has graduated from speech therapy and is still getting some help in reading.  She keeps me on my toes, but is a really great help to me around the house.   And she is funny!  Bella is doing therapy now in our home.  I am not too sure how I feel about it yet.  It is the new model that they just switched too.  I am so used to going somewhere so it is a bit weird to get used to having different people in and out of the house.  She is trying to exert her authority over our home with screeching and yelling.  She is hysterical these days too.  Right now her favorite thing to say is "so terrible mommy."  Cracks.me.up! 

More to come soon (including pictures from Halloween!)