I Know What it is to Have Plenty: A Look at Prader-Willi Syndrome

Sometimes we are afraid when our physical circumstances look bleak around us.  We may actually worry about money to the point of not being able to provide for our most basic needs.  Although, truly, many of us do not even face such circumstances. 

Honestly, if you are reading this post, you probably really do not know what it even means to be hungry, much less not sure where your next paycheck is coming from.  

I mean, really hungry.  

My son has Prader-Willi Syndrome (PWS)

I say this because one of the hallmark symptoms of PWS is an insatiable appetite. There are some other genetic syndromes where kids struggle with overeating, but PWS typically goes way beyond this.

They simply believe they are hungry even after eating a full meal. And, they do not understand why you as a normal person don't get it. 

Although I haven't talked much publicly about it, May has been Prader-Willi Syndrome Awareness month. You see, my special needs son has Prader-Willi Syndrome (PWS), which occurs because of a partial deletion or double imprint of chromosome 15.  

As I stated, it manifests itself the most in the appetite of our kids.

There are other characteristics of PWS, however, really, intense hunger is one of the issues most people take note of.  It seems to be the most frequent quality of PWS individuals.  This drive to eat can cause them to choke or overeat to the point of death if left unchecked. Even then, our kids outsmart even the most engaged adults and get around our locks on cabinets and refrigerators. 

They may gorge way beyond what their stomach is capable of, and this, in turn, can create bursting.  Recently, we recently had a young 8-year-old boy in our PWS community, die of this condition.  

As parents, we must try to explain the confusing state of their bodies to them, and then lock up food for their own safety.  Honestly, we can only trust their very lives to the Creator.  

So, to me, PWS shines a unique light on this verse.  You can read more about PWS by clicking on the menu above.  

PWS has many other complications

Our kids range from mild to severe in genetic symptoms of PWS. Some simply want food more than others. Yet, also some of our kids develop a variety of medical complications as well.

Most of them suffer from obesity or at least keeping their weight in check. 

Many of our kids require around-the-clock monitoring and full-time care. 

PWS really does offer plenty of unique circumstances and keeps our families busy managing their care.

Yet, hunger is forever changed in our home

Probably the biggest shift in our family life was the need to keep food under lock and key. 

Do you usually hang your bananas on a hook on the kitchen counter? Or, what about a bowl of apples for the hungry snackers in the house? 

Or, do you think nothing about driving through the fast food lane to pick up a burger on the run? 

Families outside of PWS families don't see these events as really even monumental. Yet, to a kid with PWS, these food "triggers" may cause a meltdown or tantrum because they simply cannot just say no.

Think about a severely addicted person who is shown their drug of choice and cannot turn it down. This is what it is like for a PWS person. 

While there are methods we use as parents to help them manage those urges, what we don't do is leave food to chance. 

It changed the way we do holidays, outings, errands, and more. Further, our kids struggle to find engaging relationships with other kids because food cravings always get in the way. 

So, yes, the meaning of food has really changed. 

But, life is not all about food

If you have a non-PWS family and food is always at the center of your gatherings, then you may find this completely mystifying. 

As I said, it rocked our world, but what we learned to do is find other ways to focus on enjoyable activities that do not always include food.

Sure, we exercise our basic needs, but learning to adjust how we eat, when we eat, and respect the weakness of our PWS kids matters so much more!

We love, grow and become better at our relationships. And in return, we grow closer to the Lord and each other living a rich that carries challenges.

In His grip~Kim

Originally published on 5/29/2013

Word Wednesday: Your Heavenly Father Feeds Them

Look at the birds of the air; they neither sow nor reap nor gather into barns, and yet your heavenly Father feeds them.  Are you not of more value than they?  And can any of you by worrying add a single hour to your span of life?  Matthew 6:26-27

I was watching some birds out our front window the other day. While I was doing my best to take pictures of mating cardinals, you know they sort of dance around each other. I observed them singing and flying around our yard, while I tried valiantly to grab a decent photo.  

When a male cardinal finds his new mate, he feeds her. When he approaches her with food in his mouth, she opens her mouth and he feeds her.  The end result is a mating ritual that seals the deal for life.  

Of course, the point remains that God provides the food of the field which the cardinals and other birds choose from. They never go hungry and they always have a place to nest. 

Are we not much more valuable than they are? 

God provides no matter what

I have witnessed this myself, even in the lean seasons. 

But, really, we cannot help but worry and fret, or at least I do, wondering where the money is going to come from.

Finding respite care or a babysitter grows more difficult with each passing year, and getting a job, well, that becomes a lifetime challenge too.

Sometimes there simply are not enough obvious resources financial or otherwise to help us do our job. But, really, even though we may complain to God, it is really a new opportunity for God to bring us a new miracle.

Being a caregiver gives us a chance to have faith

Doesn't it for you? I know that while we struggle to balance our caregiving duties with working and making a life, things are not always that simple. 

Prayer and having faith in God's provision, just like the birds really make the point that He does care for us and He will bring us what we need.

He will bring us new resources and/or money when we need it. 

And, in the in-between times, we keep doing what we can until His blessings come down like Mannah and feed our families.

Make time for Him.

You will be refreshed.

He will bring your needs.

He will multiply your time.

Like the birds of the field, He will feed you all that you need.


In His grip~Kim

Originally published on 5/23/2013

The Lord Has a Plan, He Knits Special Needs in the Womb

Before my special needs son was born, and I was in early pregnancy, I had a very vivid dream about him.  I woke up in a panic, because I dreamed he was in respiratory distress of some sort and he died, not long after he was born.  

I woke up crying and extremely fearful, knowing that the Lord was telling me that something was wrong with the child in my womb.  I prayed repeatedly throughout the pregnancy that he would not die, and that the Lord would give me the strength to make sure he stayed healthy.

The dream in retrospect went beyond what I knew at that time, having given healthy birth to my only other typical son, who was born with some food intolerances, but nothing more.  I did not even comprehend that I would give birth to a special needs son.  

I knew that I had taken vitamins and stopped taking all of my medications, even before I conceived.  Why in the world would I give birth to a child with a birth defect?   

We planned it as much as we could.

Yet, the Lord had another plan

He gave me two wildflowers around the time of my son's birth.  At the time it appeared to be nothing, but later on, I realized He, the Creator of the Earth, had blessed me with a picture.  

You see, that year, we had an abundance of Indian paintbrush flowers, in a sea of pink throughout our yard.  It was beautiful, and I took as many photos as I could.  

Yet, one day, there was one lone white paintbrush, devoid of the bright pink color, and larger than the others, next to all the other pink flowers.  I snapped a photo, of course, because the contrast was striking, and there were no others like it.

Then, when my son was born, he was born with Prader-Willi Syndrome, a partial deletion of chromosome 15, and also close to the gene deletion of...albinism, the genetic condition of no, or little pigment in the skin. It took me a while to remember this photo above, but when I did, I realized it.  

There was no mistake, He created my son in my womb and He, the God Almighty wanted me, and others, to know.

God makes both the special and the typical.

I cannot 100% know why the Lord gave me my special needs child, except to bless me!  That fear and panic covered me right after his birth, particularly when he collapsed after birth, in respiratory distress.  Still, he was revived, and I regained my faith with each passing day.   I knew that God would deliver, yet, it did not come easy.

God had given me my mission; I knew what my job was, and that respiratory distress was part of my watch.  That is, until the Lord healed my son of his asthma condition, and had me take him off of all his medications.  It was truly miraculous, and an answer to my prayers, of course, while my son was in the womb.  I could breathe easier.  

So many of us think we will always hate Holland.

I get the pain and confusion.  I started off there.  My aunt sent me a copy of the Welcome to Holland poem right after my son was born, and it brought me relief to cry out the truth, yet also to accept what the Lord had just given me.  

The overnight wake-up call to special needs parenthood is overwhelming for all of us, yet, we can overcome it with the Lord's help.

Yes, some days, I know I could do without my son's disabilities (he has more than one).  I admit this.  But, really, it has only made my life richer, because I had to reach deep within myself and seek the Lord during our darkest times for strength and healing.  

The problems are still there with my son, but that doesn't change.  The behaviors, medical issues, and restraints on my life do not let up, even though I wish they would.  They remain a part of God's plan for my life, but only for His glory.

But, it hasn't always been easy to accept.  We all start at the arrival in Holland.

If you are struggling to find the Light right now...

Seek Him.

Don't let go.

Read His Word.

Cry out your heart to the Lord.

Worship Him in praise.

He will answer you if your heart is true.

He will meet you where you are.

Have no fear, for He is with you.

Jesus Christ is the Prince of Peace.

All things came into being through Him, and without Him, not one thing came into being.  What has come into being in Him was life, and the life was the light of all people.  The light shines in the darkness, and the darkness did not overcome it.  John 1:3-5

In His grip~Kim

Originally published on 5/19/2013

Word Wednesday: For There is no More Distinction

For there is no difference between the Jew and the Greek: for the same Lord over all is rich unto all that call upon him. Romans 10:12, KJV

The word Lord in this verse, translates from Yahweh in Greek.  

Today is the second day of the Jewish holiday, Shavuot, or Pentecost, which is also the birth of the Christian Church when the Holy Spirit came down upon the disciples with tongues of fire.  

As I study the Jewish traditions of Shavuot and how we as Christians view it, this Jewish holiday gives us pause. 

Shavuot is the celebration of the day when Moses received the Ten Commandments on Mount Sinai.  

The word actually means weeks and marks the completion of the seven weeks between Passover and the receiving of the Torah.  It is traditionally the season of introspection.  

So, how amazing that God chose Shavuot to mark the beginning of the Christian church.

What an amazing time to mark the church's beginnings

The horrific events surrounding the Gosnell trial have shed light on the truth of the matter regarding what abortion really is.  Many have claimed they are aborting masses of tissue, yet, when those who did not know or understand when life really began, witnessed the truth, they repented.  

The reality of abortion has really had the light shown on it in stark horror.

Whether people walk away from the Gosnell trial as ProLife or Abortionist, remains to be seen, but I, for one am glad that at least the truth came out.

It brings people closure and brings an evil man to justice. 

While the world still carries out atrocities and darkness seems to hold a grip in some seasons, the light of Christ always shines.

The Lord no longer distinguishes Jews and Gentiles, because of the death and resurrection of Jesus Christ, God's only Son, Yeshua, the Mashiach.  

While the Jews commemorate the Ten Commandments given to Moses and still wait for a Messiah that has already come, the Holy Spirit has sparked us to move.

While we set about doing the Lord's work through the Spirit, He will draw His new church from out of their slumber. They will find their hearts and minds drawn to Him and to us, and we will all rejoice together. 

Shalom to you this week~Kim

Originally published on 5/16/2013

The Gifts Our Special Needs Kids Bring Us

Special needs does not just arrive on our doorstep completely appreciated. 

At first, we live through grief and despair, knowing just how much it will take to raise our kids. But it also comes with so many blessings as a mom. 

While not everyone accepts this fact, those who do will grow and develop a deeper appreciationg for what they have. 

Listen and watch one mom's view of her son who is wheelchair bound and does not have a full brainstem.

 

No matter where you are in the grief process of a new life with special needs, there is always hope and always something to be thankful for.

God does have a plan and He will make a way for us as families.

In His grip~Kim

Originally published on 5/9/2013