I have been contemplating the journey that we were thrown into thanks to having a child with special needs. It is not a journey that I ever thought I would take. It has been a journey of contradictions. It has been: frustrating, sad, challenging, joyful, rewarding, and exhausting. I will always wish Addison was perfectly healthy just for the sake of her life being easier, but this roller-coaster we are on has taught me a lot. I’m sure there are many things I have yet to learn and discover. Over the past 18 months, these are some of things having a child with special needs has taught me or I have experienced:
* To stand up and fight for what is best for my family/child. Healthcare providers are a great resource and very knowledgeable, but it comes down to this: you are the one that takes care of your child day in and day out. You are the one that lives your life. You know your child best and you know what will work for your routine. Don’t be afraid to say no to something that is not reasonable for your family/child.
* This point goes along with my last one: if a doctor or other provider is not helping you, find someone who will. If you feel like you are not getting the right answer or making any progress, get a second opinion. You shouldn’t have to fight so hard to get your child what he/she needs (but, unfortunately, you frequently will). Explore other options. There are a lot of excellent doctors out there, but there are also a lot of not so excellent doctors out there. I fought Addison’s GI doctor for months about her feeding issues and never made any progress. I started to question myself; maybe I was making mountains out of mole hills. But I asked her rehab doctor for his take on the whole situation, and he assured me that I was not crazy and gave us a referral to a different GI doctor. It took one appointment with the new GI doctor, and we were scheduled to get an NG tube, as the first step on the road to a g-tube. After fighting and fighting for so long and not making any progress that seemed far too easy. However, the reality is, it shouldn’t be that hard. So again, do not be afraid to fight for something you know your child needs. Never stop questioning and never assume that you are wrong and someone else is right.
*I have found strength I did not know I had. I have watched my child go through more in her short life than most people have to experience in a lifetime. In 18 months, she has already had 3 surgeries, spent her first 4 months of life in the hospital, been hospitalized five times since being discharged from the NICU, had multiple radiology and lab tests, and more doctor’s appointments than I care to count. While taking care of NG tubes is something I do frequently as a nurse, it was another thing entirely to have to put one in my own child every week for five months. I will do whatever it takes to make her life better and to get her what she needs. I will get through it and I might come out the other side a little broken, but I will survive. When you’re a mom, you don’t have the luxury of lengthy breakdowns; you have little people depending on you, so you have to pull yourself together and get through the day somehow.
*I have no idea how anyone could think that our little peanut is not absolutely perfect. Because she is. She is 18 months old and her development is that of a 3-6 month old, but in spite of (or maybe because of) her problems, she is perfect and beautiful to me. So she’s not everyone’s idea of the “perfect” baby. I don’t care, she is perfect to me.
*You will become best friends with Google. Every time you get a diagnosis or a new therapy is suggested, you will immediately turn to your trusty friend Google to look up anything and everything about it. You will educate yourself so that you can make a good decision for your child. You will quickly become an expert on your child’s condition and the available treatments. It is one of the few things you can do to make yourself feel like you are in control, so you will spend hours in front of your computer.
*Some days are good, some days are bad. You learn to roll with the punches. You rejoice in and celebrate the good days. You push through the bad days, and hope that the next day is a little better. You do the best you can and you try to remember that you are doing your best, and your best is enough.
*You never stop trying to solve problems or make your child’s life easier. Ok, we got rid of the NG tube, and got the g-tube, great! Now, let’s move on to trying to bottle feed again. There is always another step to take and something to try to improve your child’s quality of life. And as a parent, you are always looking for what is next and what you can do.
*You will frequently feel like you are failing. I feel like I am not doing enough to help Addison all the time. I feel like I should have done more exercises or more therapy with her or I forgot to put her hand splints on. I feel like I’m not paying enough attention to any of the girls. You’ll feel like you neglect your “normal” children because you have to spend so much time focusing on the one with special needs. On the other hand, sometimes I feel like I neglect Addison because Violet and Oriana are so demanding of my time and attention; they can walk and are starting to talk and Addi can’t do those things to demand my attention.
*If you’re like me, you will spend a shocking amount of time trying to find someone to watch your other children, so you don’t have to drag them all to doctor’s appointments. Sometimes, you will have no choice but to take everyone along. You will quickly learn to stop apologizing to everyone for this; it’s just a fact of life. Babysitters don’t just appear when you have a baby.
*Getting away is a challenge. It’s one thing to leave your kids with grandma, it’s a whole different story when one of those kids is tube fed, takes a bunch of medications, and has seizures. It’s not so simple to get away. It takes a lot for special needs mamas to feel comfortable leaving their child with someone else. Addison is not a typical 18 month old at all, so the instructions and education it takes to teach someone else how to fully care for her are lengthy and overwhelming. And if you do finally reach a point where you feel you can leave your special one with someone else, you pretty much write an instructional manual on how to take care of him/her with a trouble shooting section included.
*Some days, you will feel sorry for yourself and/or your child. Having a special needs child is hard, it’s that simple. You’re allowed to feel stressed and overwhelmed and like you can’t do it anymore. Simply put, you are human, and we all feel this way at some point. The important thing is that you don’t dwell. Mourn for your social life, your baby’s challenges, the loss of your idealistic normal, and then move on. Get back up and keep going. Don’t beat yourself up for feeling down. Feel what you need to feel, and do not feel guilty about it.