Sunday, December 15, 2013

A Mother's Guilt

As we settled into a routine at home, therapists began calling to set up their initial
evaluations of Caleb. The occupational therapist was the first to arrive. After
introductions, she got right to work. She began her evaluation with a questionnaire
on the milestones that Caleb should have reached. The first few I was able to answer
“no” to without any problem, but by the time I had reached the bottom of the list,
unable to answer “yes” to even one thing, my heart had dropped. I proceeded to tell
her all of the progress he had made, but none of it was enough for her to be impressed.

Now one could say that the very reason she was in my house was because Caleb was
delayed, but as a first time mother I began to interpret the delays as somehow being
my fault. I showed her how I held him, laid him to play, sat him in his little seat.
Everything I showed her seemed to be wrong. She wanted Caleb lying on his tummy
more; she wanted him being put in an upright position more; she wanted him out
of his little seat that provided so much support. I understood the logic in what she
was saying, but had I done nothing right as a mother? I thought motherhood would
come naturally. I hadn’t expected there to be so many rules. When she left, I sat
on the kitchen floor with Caleb and cried. I began to feel another heavy weight of
responsibility. Now I knew, I didn't just need to care for Caleb, I needed to do it the
right way. I wished I didn’t know.

The therapist would be back in three days, so Caleb and I didn't have much time to get
to work and make some progress. I began by lying Caleb on his belly, but he didn't
like it and started to cry. The crying set off the vent alarms, causing him to breathe
against the vent and turn blue. I picked him up to comfort him, remembering to hold
him in a way that would force his neck muscles to work. He cried more. I tried to
stop using his little seat so much, but then where was I to put him?  I couldn't win. I began to feel an underlying guilt that no matter what I was doing, it was never quite right or quite good enough. This feeling continues to this day.

For any parent with a special needs child, so much of the child's development rests on
you. Oftentimes services don't get provided unless you advocate for your child. In
Caleb's case, it started with the therapy. Not only did we have exercises from the OT,
but soon Speech and Physical therapy became involved. Each therapist gave me a
list of exercises that were to be done several times a day. Snuggling Caleb, just to
enjoy time with him, became a thing of the past. Now every encounter was filled with
therapy recommendations and every spare minute was spent advocating for additional

Many of Caleb's needs have changed, but they still remain ever present. Caleb needs
structure in his days. He has a very hard time without a schedule. But although I
have tried, I cannot pull myself together enough to have a daily schedule. Caleb still
does not speak. How much of this is our fault? I don't know. We have tried over and
over again to implement methods to help him, but we can only carry it through for
a short period. He has recently begun using a new communication app on his iPad.
Once again we are trying to implement “talking” into our daily routines. But for how
long? A week or two until we don't see any progress and give up?

The difficulty is that with Caleb, and most special needs children, the progress is so
slow. What takes my other children ten tries to master, will take Caleb perhaps a
thousand. And there are no guarantees that he will ever be able to accomplish the
task. So oftentimes, after two or three hundred times, we become discouraged and
quit. But there is always the nagging feeling in the back of my mind that Caleb could
be doing more if we were more persistent.

I think all mothers live with a bit of the "never enough" guilt but perhaps this is
magnified with mothers of special needs children. I wish I had an antidote and could
provide it in this post, but I have not yet found one. I do know that if I could get
beyond this feeling, I would be able to enjoy my time with Caleb so much more.

I have recently begun learning about truly giving up control of the outcome of things
and resting in God's provision. Perhaps as I begin to allow myself to rest in His
sufficiency, I will learn that what I have to give is enough, even if the results I am
looking for never occur. And perhaps in the resting, I will come to a spot where
Caleb is also enough, just as he is, and I will begin to let go of all of the expectations
that hold me bondage in this grip of guilt.

Sunday, December 8, 2013

A Word On Advice

A word on advice: Don't give it. 

I will step on many toes here, but know that I have no individuals in mind as I write this.

The reason this post will hurt so much is because I believe that all of us, including me, have failed in this area. Even as I type, I cringe at the memory of the times when I have gotten this wrong. We are in this together, so please let me be blunt and honest without the fear of spreading unintended offense.

Soon after we came home with Caleb, the advice began to poor in. It took on many different forms, but it all felt the same to me, as though the person giving it wanted to fix the problem rather than enter into my sorrow and grief. I needed someone to share my broken dreams, my heartache and my despair - someone who I could be real with, not put on a show for, having to act as if everything would be all right. I needed someone who could open up her heart enough to shoulder a bit of my hurt. But I could do none of this when the only thing being offered was advice.

The advice came in many different forms:

There was the well meaning church goer who prayed for Caleb's healing and then felt that we needed to believe and act like he was healed. This approach left no room for grief or sadness or sorrow. Once the prayer was done, it was time to cheer up and start speaking and living in faith. I believe that prayers are crucial, but when offering prayers, especially for healing, please know that the family must continue to live in the present situation until a miracle occurs. Just as Jesus wanted his disciples to stay awake and be present with Him as he was facing His final hours, please be present with the family until a time comes that God changes the circumstances. Allow them to feel the sadness and to be real with you. Continue your prayers in private, but when with the family be fully present to their current needs.

Then there was the well informed individual who provided us with articles on different ways to fix the problems. Nowadays, with the Internet, there is no reason to ever provide a family with articles unless they have specifically requested them. Trust me, they are getting plenty of advice from doctors, nurses, therapists, social workers and other professionals. Most families will have researched and read more than they can ever comprehend on the area of sickness that their child is experiencing. If a family feels that you have information they would like, they will be sure to ask you. 

The natural and holistic friends also began to offer names of herbal remedies and holistic approaches. The challenge here is that many families have just been going through months of medical interventions. They have now lost hope that the medical community can help them and so they are willing to reach out to anyone who throws them a life line. The danger in this is that these kids have many different things going on with their bodies. Without proper guidance, adding herbal remedies into the mix of all of their medicines can quickly become dangerous. I do believe that there is a time and place for holistic eating and wellness. I believe that changing a child's diet can often times help. But trust me when I say, if you are knowledgeable in this area, your friends are aware of your expertise. Again, they will seek you out if this is a path that they would like to explore. When you continue to offer them these choices, it feels that unless they try this path, it is their own fault that their child is still living with this illness. Just as someone who lives a more natural and holistic lifestyle might not choose to try a certain medicine or surgery, so a family may not choose to seek out natural remedies. Please still support them and enter into their lives. Be caring and compassionate and truly respect their choices. 

There was also the optimistic person who stated, "Everything will be all right. Just wait and see." This advice first of all is so wrong. Oftentimes, these families will never see a healing this side of heaven. They have now entered into a completely new way of life that they did not ask for. Of course, there will be good times and they will eventually adjust to this new life, but to rush that along is cruel and heartless. Try to imagine what your life would look and feel like if you had just experienced what they are going through. Spend some time with those feelings of despair. And then come along side the family with no promises of a brighter tomorrow, but with the offer of a helping hand to hold along the way.

Once you have walked with your friend for a year or two and have earned the right to give advice, you will know when the time is right to speak and when your words will no longer be looked upon as a quick fix but as a healing balm that will bring comfort and relief.

Again, I share this truly out of love. We so often get this area wrong and our well meaning intentions bring hurt rather than healing. Please take my advice to heart and the next time a word of advice forms on your lips, close your mouth, reach out your hand, come along side and begin walking the path with your friend.

Sunday, December 1, 2013

Surviving the Pitfalls of Marriage Part 2

As we continue to look at the pitfalls that are present in marriages with special needs children, intimacy is another trouble spot.  After Caleb’s birth Bob and I looked at intimacy in a very different light.  I felt that enjoying myself during this crises was somehow a betrayal to Caleb.  Bob saw it as a way to remain strong and continue on, both as a husband and as a new parent of a child with so many needs.  Many years before Caleb was born, I had read an article about how the act of intimacy helps a man to feel connected to his wife during a crises.  Somehow, knowing this information helped me to understand where Bob was coming from and prevented me from misunderstanding his advances.   I can see how a wife, who has not been given this information, could struggle to overcome her feelings of betrayal, her weariness, or her distraction with all of the new demands in life, in order to meet the needs of her husband and the marriage.  This area requires great care and communication from both the husband and wife.  Misinterpretations can cause deep wounds that can create a wedge in the relationship, and once a rift is formed, neither the physical or emotional needs of either spouse will be met. If you and your spouse are unable to talk about these issues, than I suggest at least getting information so you can become enlightened to the needs of your spouse.  Hopefully by seeking help, you will be able to navigate this area without going under.

The constant need to make life altering decisions is another challenge in our marriage.  Though people might imagine otherwise, Bob and I still do not agree on many aspects of Caleb's care.  We have different views on what Caleb is capable of doing, what classes he should take at school, and what his needs are for various interventions. Though we don't always agree, we have learned to respect each others' viewpoints.  Practically speaking, because I attend most of Caleb's appointments and school meetings, much of the final decision making falls to me. It can be tempting to just have my way, but I value Bob's input and strive to honor both of us in the decisions I make. 

One of the hardest things about living with a special needs child is the deep feelings that we aren't able to speak.  Because end of life issues often arise with these children, they have to be addressed.  And who can admit that there are days or moments when we wish a different decision had been made.  After spending Caleb's 16th birthday at Chuck E Cheese, rather than celebrating his new driving abilities or anticipating college choices, Bob and I sat together and cried.  What was going to become of our child?  What had we gotten into?  Should we have made the decisions that we had made along the way?  The depths of these feelings are real and a sense of shame accompanies them.  The only person who can truly understand and relate to my thoughts is Bob.  I have realized, through both error and success, to allow our marriage to be a safe place for Bob and me to share our deepest fears and hurts; we have learned to never pass judgment or express shock at what the other has to share.  In this area of being vulnerable, we can be the closest of allies or the worst enemies.  The outcome rests in our response to each other.

Another area that continues to be a struggle for Bob and me is arranging a night away.  I truly believe that as a couple, we need to have a date night at least once a month, but in all honesty, there are times when two, three, or four months can pass before we get a nurse scheduled and a babysitter for the other children.  When this happens, I begin to feel disconnected and out of sync with Bob.  I interpret actions in a negative light and problems arise where no problems really exist. I need the time away to enjoy our friendship and to remember our relationship before children became a part of our lives.  I believe that couples often feel date night is a luxury that they don't have the time or resources to implement, but without time away, couples will begin to only connect on a practical level, losing the friendship and closeness that is needed to sustain a marriage for the long run.  If the time is not invested on this end, more often than not, couples will need to invest it on the other end, either in counseling or working through a divorce.  Please take the time and enjoy your spouse.

The above is certainly not an exhaustive list of the areas that a couple may struggle with, but it does reveal many pitfalls a marriage can experience. Without deliberate attention, these trouble spots can destroy a marriage. As I write this, I feel the weight this challenge brings, because couples living with a special needs child are already feeling stretched in too many ways. I know this post adds even more areas that need attention, but I believe that the marriage is the support that will hold the family together. Please take the time to keep your marriage strong because through the years you will cherish the bond that will form between you and your spouse. You will look back in amazement at the journey you have been on and will be forever grateful to have had someone by your side.