We are all very aware that being a parent to ANY child is stressful. There is the financial concerns, constant worrying about their health and safety. Concerns that your making the right choices. Making choices for ourselves if one thing; making choices for a family is really heavy.

Many of us know of some of the extra stresses that families with special needs face, the extra costs of medical equipment, countless appointments, getting your child to and from one therapy appointment to another, and having to basically become a medical expert over night. Then there are the social stresses that many of us deal with. Will our child be accepted by his/her peers? Will they make friends? Will my family be supportive and adapt to his/her needs? How will I get out and about with my child and ALL of this equipment? These are all stresses that many of us know about and/or deal with all the time.

For some families, like mine, there is another layer of stress that is not really talked about as much. We rely heavily on home health nurses. Holidays and weekends very often mean that the help that we have come to rely on simply is not available.

Our daughter was born with MANY medical complications. She would not be able to eat or talk and would not be able to walk or move on her own at all. Her airway risk means that someone has to be alert and by her side 24×7. We have to suction frequently or she will aspirate and become very ill (or worse). She is on continuous tube feeds and has been since birth. In addition to managing her airway, we have to keep her formula running, medication for her countless medical issues, diapering, positioning, etc. It is a full time job to just keep her alive and well.

We have night nurses that come in and manage our daughter’s needs so that we can get a little sleep. Then during the week we usually have day nurses here to help me while my husband works. Now instead of looking forward to holidays and weekends, I often dread them. I feel like a total Scrooge. Holidays and weekends are when our help takes off. I don’t blame them. They all have their own families, and if I were in their shoes I would take time off to be with my family as well.

No help for the holidays means that we are the nurses. If the night nurse does not work, then I am up all night with our daughter. I usually drag my husband out of bed around 6am so I can get some sleep. But that means that anything he would usually do in the morning has to be put on hold while I get some sleep. Then if there is no day nurse either, anything that we need to do has to be coordinated around managing our daughter’s needs. My husband and I are an amazing team and have found ways to tag team efforts for EVERYTHING. It’s a lot of work though. We have to tag team preparing the holiday dinner, tag team greeting guests, tag team bathroom breaks- all while going on little to no sleep. Luckily our family and friends are great and totally understand our situation. Most of the time they will take over a lot of the details so we can focus on our daughter’s needs. Not everyone is as lucky though.

I still look forward to seeing family and friends, and I still love the holiday season, but as soon as we get our reduced holiday schedule my anxiety level starts to rise. If you have a “Special Needs Scrooge” in your holiday celebrations, try to cut us a little slack. We’re doing the best we can!

I am often asked, “If there is one thing you could tell others in the beginning of this journey, what would it would be?” Depending on my day, this answer varies. There are few things I would like to share with that mom or dad whose child was just diagnosed (with anything really- it doesn’t need to be diagnosis specific).

1. YOU ARE NOT ALONE! Whether you are sitting in the NICU, another part of the hospital, sitting in an outpatient clinic, or in your own home when you get the news that your child is a medical condition you’re not alone. There are more people than I ever imagined in our communities that are going through the same things you are feeling. The sense of failure that you may have done something to cause this. The anger at the world for making your INNOCENT child have to go through this. The jealousy you feel when you see friends, family and even strangers out with their healthy child. The grief and loss that over powers you when you least expect it. These are feelings that ALL parents of children with special needs go experience. It doesn’t matter if you child has a mild or a severe condition, the emotions we go through as parents are very much the same. Until you realize this,it is very easy to feel completely isolated and like no one could possibly understand what you are feeling.
2. This is not a competition. There is a very odd phenomenon that I see from time to time. Parents of children with special needs will start to talk about some of their struggles and it starts out very supportive of one another. Then, somehow it shifts. One person’s child may be more medically involved than the other and they start to say things like “well at least your kid can walk/talk/smile” and in a sense they start to belittle the other parents struggles. All of our struggles are very real! It is all very subjective too. What may seem like a lot to one parent may seem like very little to another. That does not make either persons struggle any less real.
3. Do your research. When you talk to your doctor and get a new diagnosis, a new treatment, and new medication ask the doctor to write it down or spell it. Go home and Google it and learn EVERYTHING about it. However, DO NOT self diagnosis. Do not Google your symptoms. Googling aimlessly with symptoms will only get you into trouble. No matter what you start with you will find your way to some devastating diagnosis that may or may not have anything to do with you.



4. Ask for help. I waited 2 years to ask for nursing for my daughter that required around the clock care, and 4 years to get help over night. Once I got help and realized how sleep deprived and how stressed I was I kicked myself for not getting help sooner. Getting help does not make you a bad parent. If you don’t qualify for nurses, train a friend or family member to care for your child so you can take a break every now and then. Your health will be much better and you will be able to be a much better parent for it. Even if it’s only a few minutes here and there- get help and take time for yourself!
5. Use your resources. Social Media has EVERYTHING now. There is a group for just about every diagnosis, non-diagnosis specific groups, mom groups, dad groups, if you think you may benefit from it chances are it’s out there. However, not every resource will be a good fit. I have joined some diagnosis specific groups in the past that were toxic for me. I had to walk away and find another group. If you are not getting what you need from a group don’t feel bad for leaving it. There are so many out there, I am sure you can find one that fits your needs.
6. Celebrate EVERYTHING! I HATE milestones. My daughter is 9 and we still have not hit any of the infant milestones. The first few years every doctor’s appointment is a brutal reminder that your child is different. It can be so defeating. Throw the milestones out the window and set realistic goals for your child. Learn to celebrate everything! Maybe you won’t get a first word or first step, but you get to celebrate things others take for granted. You can celebrate your child tracking outside of their previous vision field. You can celebrate having less secretions in your canister at the end of the day than you did the day before. You can celebrate 3 days without a seizure. These are just as important- if not more so- than milestones.



7. Make it count. My last piece of advice is simple, live each day to the fullest. Every moment you get to make memories do it. Never pass up on snuggles, story times or Eskimo kisses. Our kids are amazing and I treasure every moment I get to spend with mine.

In closing, you CAN do this! It is hard and it does not get easier, but you do adjust and it becomes your “new normal”. Down the road you will look back and smile at how overwhelmed you are right now. You will meet so many amazing people in this journey. Slow down and let yourself enjoy the good stuff.