After receiving the “all clear” from our prenatal genetic test, my husband and I did not expect to be in the company of over ten million other families raising a child or children with special needs.  Shortly after birth, our daughter was found to have two genetic disorders. She spent almost two months in hospitals and had 85% of her pancreas removed at three weeks old. 

Every day, since Emma’s surgery, we have experienced astounding highs and unendurable lows. She’s partially blind, struggles with sensory integration issues and has developmental challenges to overcome.   Emma is also at an exceptionally high risk for cancer, so she is tested every six weeks with blood tests and ultrasounds.  We constantly worry about her, continuously encounter people who have a difficult time understanding our family and we are always worried about the financial ramifications, as this journey comes with a very high price tag.     

Once we joined support groups and exchanged experiences with other parents, it was obvious that our concerns, feelings and emotions were surprisingly similar to theirs.  I quickly realized that this journey rarely involves the experience of a singular loss, but a series of losses over time.  It was comforting that we all shared the common goal of setting our children up for the most successful future possible.  However, that comfort has, at times, been over shadowed by the lack of understanding that many have for special needs families. The snarky remarks, sarcastic comments and hateful disputes that I and my husband have dealt with is astounding, yet we found that many special needs families experience similar situations.  The following is a list of things we feel others need to be conscious of and recommendations on how to possibly help your friends or loved one(s). It’s rooted in our own experiences, as well as, experiences of our friends who are courageous parents of special needs children.   

1.       Hop on for the roller coaster ride or get out of line.
You've stepped into a very messy and chaotic situation.  It’s likely that feelings and emotions are all over the place and there are going to be good and bad moments. Please remember that our families live second to second, or day to day, and this is normal. Support and understanding is what we need.  Active listening and lots of hugs are always welcomed.

2.       Lose all your expectations.
We are doing our best while under a tremendous amount of pressure.  There are many medical professionals micromanaging the care of our child. You may not agree with the choices we make, but you need to understand that these choices are best for our family.  Our priority is our child and we simply can’t live up to your expectations.  We are raw and sensitive and this is normal.  Telling your friend or family member that their sensitivity is a character flaw probably isn’t a therapeutic and supportive thing to say and may cost you your relationship.  Reminding us that we need to “take baby steps” only communicates that you have goals which you expect us to meet.  We have our own set of goals and plan to reach them in our time.  We need love and understanding. We need you to accept us where we are at this moment. 

3.       As much as you think you understand, you really don't. 
Although we all experience difficult situations, disappointments and letdowns, one never really knows how another may handle those experiences.  We all come to the table with different morals, values, and religious experiences. Our emotional states vary and our social influences may be quite different.  It's these differences that affect our perception of a situation. Assuming that you know what we are experiencing in these tough times leads to judgment. You might be able to empathize, but please know you truly have no idea.

4.       Our losses are bigger than you know.
When you look at us on the surface, its easy to assume that you’re aware of all our losses.  We promise it goes much deeper than you know.  We are suffering losses on many levels. The pain experienced with each loss is incomprehensible. We have lost bonding time, the opportunity to breastfeed, and the dream of how our child was going to grow up. We've lost the dream of how our family was to function and our financial security, as there is a hefty price tag on medical equipment, doctors’ appointments and therapy.  Please allow us ample time to get through this. It’s certainly not going to happen overnight and it's probably not going to happen within months. As a matter of fact, it may take years to tread through this complicated recovery process. We need patience and compassion. 

5.       Please be kind and helpful in what you say.
We understand that you mean well and may even feel helpless, but if you can't find anything nice or useful to say, silence is golden.  Please don't tell us that God only gives us what we can handle or everything happens for a reason.  These sayings serve no purpose, undermine our right to grieve and are simply not true. Please don't say to us that you don't know how we do it or that you could never tolerate our lifestyle. We didn't choose this for ourselves.  If we could have it different, we would.  Statements like this are judgmental and hurtful. Please don't ask us when our child is going to grow out of their disease because this simply isn't possible. This statement communicates that you're tired of dealing with our situation. If this is the case, its ok, we understand if you need to gently excuse yourself. Please refrain from telling us our child is fine. It may look that way to you, but they aren't fine.  Chances are we aren't discussing the intimate medical details with you.  Finally, don't tell us it could be worse or at least our child doesn't have “x” disease.  We understand this might be your way of looking on the bright side of things, but it's downright insensitive. For us, it couldn't be much worse.

6.       Just because you don't see it doesn't mean it's not happening.
You may not see it, but we are up at all hours checking blood sugars, giving insulin, changing IV bags, unclogging feeding tubes or cleaning vent equipment.  We watch our child's cardiac monitor and are consumed with counting their every breath.  We spend our time on the phone gathering test results and making follow up appointments.  We are constantly trading one therapist for another in hopes that we are getting our children the help they need.  If you don't hear us talking about our child’s struggles, we're keeping the conversation light. 

7.       We probably need time to ourselves.
Many of us spent a significant time in the hospital with our little ones.  Most of us have every kind of medical specialist, therapist and social worker standing between us and our child. Our days are filled with doctors’ appointments, therapy, lab work and tests.  We are trying to be as social as possible, but we really need time alone. The desire to have time alone is a very normal need that should be fulfilled. We lost our bonding time and are never going to get that back. Please remember the priority is our child and our immediate family unit, so we aren't going to make all of your get-togethers or functions. We are mentally and emotionally exhausted. Please know it's nothing personal. Spreading ourselves too thin isn’t the right approach. 

8.       If we haven't asked for it, we don't need your advice. We need your support and love.
There are numerous doctors, specialists, therapists and social workers involved in micromanaging the care of our child.  The last thing we need is unsolicited parenting advice or rude comments. Know with confidence that we are taking very good care of our little ones and we know what’s best for our children. Additionally, the immediate period after arriving home from the hospital probably isn’t the right time to advise your friend or family member that they should be taking breaks from their child. Approaching this time with love, understanding and unconditional support is absolutely necessary.

9.       Support our religious beliefs or lack thereof. 
It's neither a good time to convert us to your religion, nor is it a good time to preach. We need unconditional love and support.  It's a good time to practice your beliefs.  Let everything you say and do be good and helpful. Provide us with encouragement. Know that your good deeds aren't going unnoticed and we are grateful.

10.   We aren't worried about the things you worry about.
Typical parents concern themselves with their child giving up items such as bottles and pacifiers. They may spend a significant amount of time thinking about the right school or play program. We aren't concerned about these things as much as we are concerned about developmental delays, gross and fine motor skills, blood sugars, cardiac, respiratory or skin issues.  The bottle and pacifier aren't going to negatively impact our child's adulthood.  Our children need to gain neurologic and emotional maturity before they can handle being in a classroom setting. We, as their parents, are in the best position to decide when they are appropriate and equipped to attend school.  We would appreciate your support in our decisions.

11.   Even if it's managed well by medication, it's still serious.
So your friend or family member’s child appears to be a normal child to you. In your mind their disease process is well managed by medication or has been cured by surgery.  You ask what all the fuss is about and question your friends’ sanity. I mean after all, they seem stable, right?  Wrong.  Chances are, without medication, the child could die.  Surgery or medication doesn’t mean “normal” for the parent whose child is faced with developmental delays, possible seizures, unstable blood sugars or an uncertain future because of the probability of cancer or another devastating disease.  It's serious.  It always has been and always will be.

12.   Just because you're over it doesn't mean it's over.
Your friend or family member’s child has made it out of the hospital after spending weeks in the ICU.  It's all downhill from here, right?  Wrong.  It’s been 6 months since they've been discharged so it's time to get back to a normal life, right? Wrong again.  We understand you're over it.  We understand your need to get on with life.  We welcome you to do so and promise we are ok with that.  However, it's not over for us.  Please don’t expect us to get over it when you've decided you're done dealing with it.  We are now dealing with the aftermath and our hands are full. Many of us are suffering financially and this is a stress that can tear the strongest family down to its core.  Just be kind to us.  We aren't being negative; we deserve to have the time we need to recover from the devastation our family has endured. 

13.   Know that it's always on our minds. Know that the stakes are high.
Every second of every day, our minds are on our children.  We don't stop thinking about them.  Our children have suffered too much already.  Whether it was a result of cardiac or respiratory arrest, stroke, blood sugar highs or lows, genetic anomalies, physical malformations or the like, it crushes us to know that our children could possibly suffer from additional injuries.  Every time our child is ordered to have blood draws, tests or procedures, it's a reminder to us that our child could fall victim to a devastating, or worse, fatal disease. Know that you're not going to change how we think and feel about our children. The things that our family has been through have made us a different kind of parent. Please support who we are. 

14.   Avoid getting in the way during hospital stays.
We understand you may want to be involved during hospital stays.  Please remember that we need to spend as much time with our child as possible. This time is not about you or your emotional needs.  While it may be acceptable to sneak into the child’s room if we aren't present, please refrain from expecting us to share our time. This causes an increase in anxiety levels for many of us.  Knowing that you are close by in the waiting room and available in case we need a break or an emergency arises is comforting. Allow us to provide updates when we can, but please keep questions to a minimum. If we request your presence at our child's bedside, be ready to jump in to help. 

15.   We may be struggling with PTSD, ASD, anxiety or depression.
Many of us almost lost our children.  Many of our children have lifelong injuries or disabilities as a result of their disease.  Know that we are judging and criticizing ourselves.  We may be lonely in our thoughts.  We may be experiencing feelings which cause us to cry, experience flashbacks or have nightmares. We are going to get ourselves through this.  We need unconditional support and reassurance. We need you to remain nonjudgmental. If we want or feel the need to share our thoughts and feelings with you, we will.  Please don't try to push us into sharing things that we are simply not comfortable talking about with you. Following our lead is a supportive way to let us know you care. 

16.   If we are up for visitors, let’s make plans.  
After spending months in a hospital room with our children, we are ready to sleep in our own bed, be surrounded by our own things and use our own bathroom.  We are looking forward to living by our own schedules and enjoying our children.  Don’t ask us to pack what seems like half the house to visit to the family. Any other parent with a new child would never consider this as an option, why would we?  We're tired, we would love to see you and you're welcome visit our house. Please call to make plans and give us ample notice. Last minute request put pressure on us. We need time to prepare ourselves.  You may not mind our mess and pajamas, but we do.  Be respectful in allowing us to respond to your request.  If you don't hear from us, it's nothing personal; we simply aren't tied to social media, emails and our devices like we use to be. 

17.   Offer to help with the other kids.
Remember that for many weeks, we had medical personnel, bedrails, tubes and wires between us and our child.  We need help with other things, so we can catch up on counting all their fingers and toes.  We want to change their diapers and feed them.  We want to play dress up and gaze into their eyes.  The perfect way to help us do this is by offering to spend time with our other children.  All the focus has been shifted away from them.  It would be wonderful if you could turn your spot light onto them.

18.   Make meals and bring the sweets.  Finger foods and snacks are greatly appreciated. 
We have a lot of new responsibility, new worries and are very tired.  If you are coming to visit, bringing something yummy to snack on would surely put a smile on our faces.

19.   Help us with household duties.
Daily responsibilities are hard to deal with in time like these.  We need to focus on our children.  We want to hold our babies and we need some downtime too.  Doing a load of laundry or the dishes, making a bed or dusting would certainly take some pressure off. If you come over and eat, be sure to clean up after yourself.  Leaving dishes or a mess behind for us to clean may cause us to regret the visit and possibly cause us to avoid future ones. 

20.   It's a long road to a full recovery.
Please be patient as there are numerous components to fully recovering from long hospital stays and devastating diagnoses.  The grieving process is difficult and different for each person.  During times that we choose to talk about our experiences, engage in conversation by providing support and validating our feelings.  At other times, we may not feel comfortable discussing our issues with you.  Please know that this is not personal. We care for you; we just don't care to discuss our feelings with you at this time.  


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