A Tribute to the Power of One

Dear Mary (Our Early Intervention Specialist),

You had been teaching for many, many years when Caleb and I arrived at the door
of your classroom. To you, this was the beginning of another day like many that
had passed before. To me, it was an embarking on a new and unknown path. Our
home therapy had been discontinued, and this morning we were to begin out-patient
early intervention services. We had received the letter in the mail telling us the day
to arrive, the classroom number and your name. I had envisioned what we would
experience but was not prepared for what I was about to learn.

The moment the door opened, your smile and personality welcomed us as a
grandmother would welcome her family. You instantly put me at ease as I rolled
Caleb and his ventilator through the door. You took the lead to show us around the
room and allowed us to choose an activity that Caleb would enjoy. Your approach
that entire first day was about making Caleb feel comfortable and about finding out
what my needs/concerns were as his mother.

Over the next two years your classroom became a place of support for me. On days
when I was so sorrowful about our situation, you dried my tears and provided a hug.
On days when I was frustrated with lack of services, you helped me to brainstorm
about other ways we could get Caleb's needs met. And on days when I was so proud
of an accomplishment, you celebrated with me. You were so present that on each
day of class you were able to provide not only therapy, but also the support and
encouragement I needed in order to make it through another week.

Because Caleb was my first, I not only needed help with teaching him his therapy
exercises, I also needed someone to guide me in my parenting. You gave gentle and
wise advice on everything from potty training, to eating struggles, to discipline. You
instilled confidence in me by your simple methods of explaining things and by your
trust in my abilities. You truly made me feel as though I could succeed in meeting Caleb's needs.

In your classroom there were several other students also receiving services. Over the
months it became obvious that some parents were better at following through on home
exercises and parenting tips than other families, but never did you show annoyance
nor speak ill of any of the families you were serving. Even on weeks when we were
not able to complete the home exercises and there was no progress, you were happy
to see us and encouraged us to pick up where we had left off and continue working
toward our goals. You encouraged us with each small step along the way, pointing
out that, yes, Caleb was getting stronger and moving in the direction that we wanted.
You felt comfortable with the rate of his growth and in turn, you gave me permission
to be okay with his slow, slow progress.

 You carried with you a humble, yet informed spirit. As our time in your class came to a close, you had us connected with all of the services we would need to continue along the journey of Caleb's development.

Caleb has had many teachers over the years that have lived out all of these qualities,
but perhaps because I was so young or because Caleb was my first or because I was
present in the classroom for each session, your impact on me was the most profound.

_______________________________

Mary passed away a few years after we left her class. At her funeral were hundreds
of parents whose lives she had touched throughout the years. I don't know how many
of them were able to share with Mary the impact she had on their lives. So, to all of
the Marys out there, thank you for the job you do. You may never be told, but you are
touching lives for eternity. Not only have I been a better parent to Caleb because of
what I learned in Mary's class, but I have also been a better parent to all of my other
children. And what my children learn from me, they will pass on to their children and
their children’s children. And so please, never underestimate the power that you have
to make a difference in this world. You are not just teaching a class, you are making
the world a better place for generations to come through your impact on one family at
a time.

A Letter of Encouragement

My Dearest Friend,

As you sit at home, alone, or surrounded by nurses and therapists, I realize how lonely you are.  No matter how many people step in to help, the ultimate care of your little one remains yours and yours alone.  The professionals can and will eventually leave and move on with their lives.  There is no moving on for you.  You have now begun this journey on a very lonely path.

I understand how frustrated you become at times, not only with the situation but also with your child.  You are not able to place your child in her crib and walk away when she has been crying for hours on end, because your little one needs constant supervision in order to keep her alive.  You are also not able to call your neighbor and ask that she stop in to give you a break when you feel you have had all you can take, as she is untrained to meet the medical needs of your child. 

I know the worry that you carry regarding your child's health and emotional issues. When the rest of the family is asleep and your little one has finally begun to rest, how you lie awake worrying about insurance coverage and bills and surgeries and not only what next year will bring, but how you will make it through tomorrow.

I have experienced the moments of crying out to God without having the words to express my pain and sorrow.  

I recognize the guilt that you have for feeling all of the above emotions.  This is not how you envisioned motherhood.  This was nowhere in the plan you laid out for your life. 

I also acknowledge your deep love and commitment for your child.  I know you are willing to give up personal comfort, wealth, your own career and your personal plans, in order to provide your child with all she needs.

I notice that you scour the internet looking for answers and a cure.  I have observed you on Facebook and blogs in hopes of finding some relief for your inner turmoil.  I recognize that you reach out to friends and share your hurt, frustration and loneliness. And I also realize that no matter what you do, at the end of the day you come back to the starting point of needing to walk a path that you never imagined or dreamed of walking.

The first two years of Caleb's life were filled with such loneliness, frustration and sorrow for me.  And I also reached out to others with the hope of somehow being released from the journey before me.

If I were sitting next to you, I would put my arms around you and allow you a good cry.  I would come over with coffee and just sit and visit and give you a chance to experience what a "morning out for coffee" feels like.  But because many miles come between us, let me offer you some encouragement.

What you are doing truly matters.  The endless sleepless nights, the speaking up when your child can't, the loneliness and sorrow.  It is all working in you to create a beautiful masterpiece.  While I was going through the early years with Caleb, I thought I was sacrificing myself and giving up my dreams.  In a sense I was, but what I received in return has been a change within that I never could have imagined.  I have become stronger and wiser. I am patient and caring.  I find value in so many things that I never found valuable before.  I see beauty where before I only saw heartache and sorrow.  What is occurring in you is the burning away of all self-centeredness and it is being replaced with a beautiful thing called love.  

Please reach out to others who can help (a counselor, a pastor or a friend who really understands).  There is no value in traveling this path alone.  And rather than fight what you are feeling, allow it to occur and over the years, sit back and watch the beautiful life that happens not only in your child, but especially within you.

Traveling With a Special Needs Child

Caleb was discharged from the hospital in January and by the time Easter rolled
around, three months later, we felt the need to travel. All of our family is out of state,
and we had been used to traveling several times a year in order to spend time with
loved ones. We saw no need for this to change, and so as April rolled around, we
packed up Caleb, his ventilator and all of his equipment and headed out on the four
hour trip to spend the weekend with family.

The drive to Michigan was uneventful, and we felt pretty good about our
independence and our ability to continue on with life as we had previously done.
Once we arrived, the unpacking took a little longer than normal, and we had a lot
more luggage, but nothing would deter us. The problems didn't arrive until nighttime
set in. As the house became quiet and we all turned into bed, Caleb's alarms began.
We were used to having a nurse at home, but so far away we were on our own. As
soon as we would fall asleep, Caleb would disconnect from the vent. We took turns
getting up to re-hook him, but as the night wore on and the alarms continued, our
patience began to wane. It seemed that we could not sleep for more than fifteen
minutes in between each alarm. By 4 o'clock in the morning I was ready to reload
everything and head back home.

As the sun began to rise, so did Caleb and the rest of the household. Our interrupted
sleep was over, and we were to begin a new day. We took turns trying to nap, but
this seemed to defeat the purpose of being together with family. As day two turned to night, we settled in for a repeat of the first night. Morning found us packing up and heading home, short on sleep and patience.

The trip back to Ohio was filled with an air of defeat. We had made the trip, but had
it been worth the trouble? We didn't bother discussing much as we knew that in our
exhausted state, nothing productive would transpire.

As the years passed, Caleb's night time venting became much easier. He slept more
soundly and the alarms became few and far between. This made for easier sleeping,
but our daytime with him became more difficult.

Caleb was becoming ambulatory and beginning to explore everything. And not in the
way a typical child would, but in a destructive way. He would wander from room to room,
and anything he would pick up seemed to end up broken. He loved to try to take
things apart, and this led to needing constant supervision. I do not exaggerate when I
state that at all times either Bob or I would need to be with Caleb. In this manner, one
of us would be able to visit, but the other wouldn't.

Again, we began to wonder at the value of the effort needed to take these trips. And
yet, family was such an important part of our lives. We needed to find a way to make
this work. Some things could not be changed, but others could be altered to make the
trips more enjoyable and slightly less exhausting.

In the hopes of helping other families navigate their travels with fewer struggles, I
have compiled the following lists:

Things I would have done differently

• I would take the first year and do no traveling. I would welcome family that 
would like to come our way, where our support system was in place. 
• I would educate and include my family more in the care of Caleb. I imagine 
some of them would have been willing to take a turn at following Caleb around 
while we were visiting. 
• I would sleep all that I needed and view the time with family as a break for 
myself.
• I would be open and honest with family regarding the difficulties involved in 
traveling. 

 Valuable tips when packing for a trip  

• Have a master list of all medical supplies that will be needed. After Bob would
pack, I would use the list to double check that everything was loaded. There is 
no worse feeling than arriving at your destination only to realize that you have
forgotten the cord to a necessary piece of equipment. Four hours is a long drive 
when you have to turn around and go right back home.
• Bring plenty of your own toys and books to entertain your child. One time we 
brought a whole bin of supplies to keep Caleb entertained and in the same room
as the rest of the family. 
• Always, always have the phone numbers of your doctors and medical supply 
company. There have been a couple of times when our equipment company 
has been able to bail us out of a jam. 

Pointers for those who open their home to families with special needs children

• Remove any items that are breakable.
• Close and, if possible, lock doors that you do not want the child entering.
• Have available some of the child's favorite activities.
• Don't plan on sitting in one room and visiting. Be willing to go to a park, take 
a walk, include the child in a cooking activity, or follow the parent around 
room to room. 
• If a group is gathered in one room visiting, and you notice that the parent and
child are missing, seek them out. It is a very lonely feeling to be with a group 
of people and yet be sitting with your child in another room. 
• Engage with the child.  Even if the child cannot talk, still include them in
conversations and activities. Make comments during the conversation rather 
than asking questions (ie: This puzzle is tricky; you sure are working hard at 
it). 
• Be nonjudgmental of the parent and the child. Traveling puts children out of 
their comfort zone. Meltdowns and tantrums will be more frequent which in 
turn increases a parent’s stress. You may see the worst side of both the parent
and the child.
• Offer encouragement. A word of compliment regarding either the child or the 
parenting goes a long way. Parents of special needs children very rarely get a
pat on the back and they often feel as if they are failing. 

Traveling with a special needs child remains a challenge, but it has gotten much easier over the years. We no longer come home exhausted from our trips, and our family has learned a lot about Caleb. My hope for you is that whether you are the parent of a special needs child or the extended family, you will cherish the special life that has been added into your family.