I saw you leave the office, with a wee one in your arms. You were crying and quickly averted your eyes and tried to hide it. Your daughter is beautiful, she gets that from you. Although your heart is hurting now, for the many dreams that you had for the life of your child now lost, you will rise up stronger than before. You do not know it yet, but this time of mourning and what you are mourning will in fact be your greatest blessing. But do not rush things. Mourning the loss of all of the dreams and goals that you thought would come is something you must do. It is something that you will continue to do over the years at various points and everything is more difficult when you are tired.
That being said, resting is vital. If you are unable to get a full night sleep because you are worried about your child, here are some things that we have done to make sleep possible. In our situation our daughter has seizures every night. So, for a long time our daughter slept in our room. As she got older we got a lot of judgement on having her in our room. Especially when people would see or hear that instead of having a master bedroom and a room for her, we had a room for her with her bed and a queen sized bed in it for us. I would sleep there every day and Brendan would join me on the weekends. The other room had a bed for my husband to sleep in during the week, so that he would be rested enough to function for work. There are still times during the day that I will lay down with her or "hold" her very tall ten year old self in my arms in the recliner and rest with her as she sleeps in my arms. These moments are some of my most cherished! Just a few short years ago she was more stable and we more confident, we moved her into her own room-the closest one to ours. We got a seizure/movement monitor called an EmFit monitor. We got a video baby monitor that allowed me to talk to her, hear her, and to see her. We also made sure that she had a safe bed, and safe bedding. Basically we thought through everything that we could do to ease our anxiety. When I still couldn't sleep after all that we did I sought help from my doctor. I was going to a counselor so I talked to her too and then the miracle for me came I learned that I had sleep apnea and was not getting past stage 2 of sleep. I was literally waking up 59.6 times an hour!! The first night I used the C-Pap machine I only slept for three hours but woke up and felt like I could run a marathon!! I fixed the problem of not being able to sleep and I was no longer anxious all the time. It wasn't a magic fix, anxiety is still something that I deal with regularly (and is completely natural for parents of special needs), but when I have actually slept-even if it is for just a few hours-I am much more able to handle what the day throws at me.
Aside from sleep the very best advice that I can give you is this. Trust yourself and your "instincts" "gut" "hunch" "feelings" whatever you want to call them. You see your child 24/7 and know them better than any doctor ever will. In fact the very best doctors will tell you this. I am not saying to google symptoms, come up with a diagnosis and tell your doctors what is wrong:-). What I am saying is that if you feel that your doctors are not listening to what you have to say... If they are being dismissive or only taking into account some of the symptoms that you are dealing with, than you need to speak up for your child. My biggest regrets over the years all stem from a time when the doctor was telling me something or not listening to what I was telling them and making a decision that did not make sense but that I went along with because they are doctors and I am not. There have actually been a few times when if I had not spoken up it is very likely that Avagrace would not be here with us today, in fact the doctors told us that she wouldn't, it was a lesson for them and for us. There are also times when if I had spoken up we may have gotten her the help that she needed sooner.
However, I mentioned the word regret. Regret is a terrible thing and something that you should avoid at all costs. I know that sounds like a no brainer. But do try to steer clear of the what if's. What if I would have pushed the doctors more when I felt something was wrong but they dismissed it with the blanket statement of "kids do weird things?" Or what if this happened because of XYZ? What if this is my fault because I carry a genetic defect or what if my husband and I together create a genetic defect? Stop those thoughts dead in their tracks! Shoo them away and never welcome them back! YOU are in no way at fault for any of this!! This is not your fault and there is no way to reverse time and take back the knowledge that you now have but didn't have then. Moreover, there are more diagnosis out there than any one person could count or study. In fact, we have met more doctors that do not understand our daughters diagnosis, let alone have seen it or understand it, than the ones that do. Her diagnosis is a Neurological one and I am talking about Neurologists and ER docs and even pediatricians that had NO CLUE! The good ones will say," I am not familiar with this." They may ask you questions and hopefully will say "let me look this up and I will be back shortly." So again, you are your child's best resource and you are an expert on YOUR child! Nobody else will know as much about your child as you do. Do not be afraid to question and speak up. If your doctor is offended by this than it is time to move on to a new doctor. If you do not have that option (we have been in this situation too) then pray and research doctors out of your area and look in to what it will take to get an opinion from a different doctor. Many insurances cover out second opinions or changes in doctors. Some do not. It is a tricky situation to be in and I am not here to tell you what to do, but rather to encourage you to trust your gut and be confident in your wisdom about your child and work to find the best doctor that you can have. This is invaluable.
If you are anything like me, you are much better at the written word, than the spoken word. I can be a terrible communicator if I do not have something written down in front of me. When I am writing the words just flow. But when I am speaking, things come out jumbled, I forget names and words and I sound like I do not know what I am talking about. So I have a file that I bring with me. A small one to carry everywhere, and a larger one that I keep in our daughters "ER and Seizure bags" so that the info is available when it is needed. I also have practiced explaining the diagnosis many times and will practice the points that I want to go over at the doctors office. I will also bring a check list with my questions etc. This might not work for everyone but it is a life saver for me.
When you were pregnant you prepared for everything, except this. It is not a common for expectant parents to think about having a child with major medical challenges. It may be a fear that crops up but usually that fear, unless tests and diagnosis show otherwise, is quieted by your doctors and family. "It is not common" "There is no need to worry" "Everything is going smoothly" "Everything will be ok." And that is true, everything will be ok, but one persons ok is certainly different from your ok. So take the time to mourn, mourning is not negative, being negative, or being pessimistic. But don't forget to pick yourself up, brush off the dust, and get to know your new normal. Bitterness is negative and it is something that will vie for your affections often, but do not let this wear you down. Find scriptures or favorite quotes and place them around your home to encourage you and to remind you that you have a rare gift. It may not be what you were expecting and anticipating but you will see the beauty in the chaos that is your new normal.
Normal is such a strange word. Every single person has something that they have gone through or are gong through that is challenging, heart wrenching, and yet beautiful. From pain can come the most glorious beauty (as a Christian I am often reminded of excruciating pain and torture that Christ suffered on the cross to bring the world the beauty of everlasting life.) So when you see your friends children or your other children developing in the typical progression, try to remember that we are all individuals and that mourning is not negative. However, when you do reach different milestones, which are different for every special needs child, from your child learning to swallow, to tracking objects with their eyes, or maybe their first words in sign or voice....regardless of the milestone those celebrations and appreciation for the progression will be so much more meaningful and lasting than those milestones which were expected. When you expect something it is exciting to experience it, but when something comes that you never thought would, now that is a true marvel! I will never forget the joy we had when our daughter learned to read. We were told that she would never be able to accomplish this, but she did and it was magical.
I know that your child is small and you probably still have that connection that all new moms have with their babies. It is as if you can just understand what it is that they need or when they need you. While this is not a perfect brain to brain telepathy, it is something that I still experience with my 10 year old daughter even though this has long faded with my other children younger than her but no longer babies. Even if you do not know what they need all the time, you are your child's best advocate and voice because you are equipped to handle whatever road bumps may come-even if you do not believe it, you are.
Along the same lines your heart will forever live outside of your body, for all of your children, but most especially for the children that need you the most. No, I am not saying that you love one child more than the other. However, you will experience such a storm of emotions each day. Plus, every new challenge and new opportunity to defeat said challenge is yet another way that you solidify your connection with your special needs challenge. Instead of wishing that your child would just be quiet for one minute (although I can't promise that this feeling won't come, especially if you have a house full of typical children that are particularly chatty lol) with this child you will cherish the noises that they make even if they are unable to say a single word, because some special needs parents are never able to hear their child utter a single word-let alone I love you. A dear friend wanted me to add that you may not always cherish these sounds, she has a child who cannot speak but wails or yells throughout the day. It is much like Dory in Nemo trying to speak whale :-) This mama has to wear ear plugs, but she still loves to hear the noise because it means that they have an open airway and are expressing themselves. She says that you can definitely tell when he is happy yelling and unhappy yelling even though he does not produce tears, and when he stops his type of song she knows that something is wrong. You will learn to love the gestures of love that they show you and you will look for them, just like you would with a typical child, even though these actions will be different. But you will feel it and you will know it when your child calms when you are near, or stops crying when you pick them up, or does whatever they are able to do to show you in their way that you are their number one! Just be on the look out for all of the lovelies because those lovelies will get you through your hardest times. From another friend, cherish their precious features and the things that they enjoy, because it is these pieces of their individuality that you will cling too when times get tough.
Being a special needs mom will also strengthen your relationships with your other children. It is amazing to see your children rally around their special needs sibling. Wether it is to love on them, protect and stand up for them, learn about their diagnosis, or see the beauty and uniqueness in others that they may never have learned how to do. I am very blessed with a 12 year old who actively seeks out friendships with kids in his school who are special needs. He has made it a point to defend those who are teased and to reach out to the lonely kid. Despite his sweet character I do not think that he would have tried to do this so earnestly unless he saw all that he has seen in caring for his sister.
Along this journey you will see the best in humanity and some of the worst. You will be encouraged and heart broken. You will see adults that act like children, and children who act better than any adult you have ever met. You will hear standard compliments that are often back handed compliments even though I do not believe that people mean them as such. You will have people who don't know what to say. And you will have the people who say way too much. One of the reasons I did not approach you today (although there were many reasons) is because I can sometimes say too much. I didn't want to be in your face, inviting you to a support group, and giving you my information when you already had so much to process. Sometimes, having other mothers reach out to you is overwhelming. But it is going to be one of the very best blessings along this journey. Getting plugged in with other parents, wether it be in person or on a Facebook group that was created for your child's diagnosis or for children with rare disorders in which there are now diagnoses. Having that group to be involved in a little or a lot is always helpful. Moreover, being able to help others in a time when you feel like you need more help than you can give, will actually bless you tremendously. When I visit friends in the hospital with their children, I always say it is a selfish thing for me to do and I firmly believe for me that it is. Because I do it for two reasons. One is because I love them and two is because I do not want them to feel the loneliness that I have felt. Even if I know that their family is here and that they have had an abundance of visitors, I still try to visit. That is because over the past six years I can count on one hand the number of visitors that have come to see us during our many hospital stays. It has actually gotten to the point that I do not share when we are in the hospital because I do not want to hope for company and just be lonely again. And just in case you are on the loneliness end. Just remember that God is always with you and that your child needs you more than you need visitors. Sorry for the side track...back to online groups, one group I belong to has people that post every single day. I on the other hand will post in reply to others and then I generally post when things are at the extremes of fabulous to needing prayer. But without those groups, I would not have met some of the most amazing mothers on the planet. I would not have learned some tried and true techniques for dealing with all sorts of issues that may crop up, and I would not have the encouragement of families across the globe that can empathize and truly understand what this life is like.
While it is true that you will loose friends who are unable to handle or understand the challenges you may face. You will be blessed by knowing who your true friends really are and who you can reach out to-to bless and be blessed by. This is a very valuable lesson and a very painful one. But I would rather know who is for me so that I do not waste my very little extra energy on those who are against me. The more difficult thing is when your child wants/needs friends. Some special needs children are cognitively aware enough to know that they are lacking in the friend department. And while they are medically fragile and you are constantly combating germs I urge you to include your children in programs that are either designed for special needs or not if or whenever possible. For instance our daughter loves girl scouts and while we have not been able to go for literally two years, she still loves it and cannot wait to go back. Many organizations such as the Girl Scouts will welcome your child with open arms and the children are much kinder than you would think. I will say that it is harder though as they get older and the children are on age level when yours is developmentally many years younger. But if you are open and discuss with the troop or group of children what is going on with your special needs daughter you will see the love and acceptance from children who are also learning a valuable lesson in life, to love without expectations.
Dealing with people online has not been as welcoming as dealing with people in person. People can be very brave behind a keyboard. However, if you do choose to share your story publicly, you will see that there is plenty of good that comes from the bad. You will have many "rubber neckers" as Brendan and I like to say. They are the people who are just there to see "what happens next." You will get the people who are the worst and down right hateful. Use that block button freely! I just want you to know that this is a risk and you would be surprised at what people say online or to your face, but especially online. The best part of sharing our story online is not that we are raising awareness, that is a close second. But for us it is because we have a prayer army at our fingertips, full of genuine people who love our child and our family and pray for us and with us- from all over the world! That is powerful! And as I said before you will be raising awareness and helping people to see that special needs children are valuable people too! I may end up writing another blog about the boundaries we set up in choosing what we share and what we do not. But for now I want to keep things as simple as possible.
One of the things that I have done very-very wrong for the past 10 years, has been to care for everyone else and neglect myself. I put off my own doctors appointments. I eat when I get a chance instead of purposefully eating regular meals throughout the day. I eat leftovers and even though I am a health conscious cook for my family, leftovers are usually the least healthy bits of the previous meals. Therefore I am not making sure that I get my protein, vegetable, and fruit intake like I should. I also do not set aside the time to exercise daily like I should. Instead I fit it in here and there at different times throughout the week which is the worst possible way to form a routine or habit. And now that I just typed the word "routine" I laugh. It feels pretty impossible to make a routine and stick to it when seizures, who come and go as they please with no rhyme or reason, dictate your life. However, I am both a creature of habit and a person who thrives on order and routines. And so for me, I have purposed this year to take my health more seriously by taking care of myself and at least setting daily, weekly, monthly, and yearly goals and then organizing them with desired deadlines. Or at the very least some sort of configuration for the daily and weekly goals. And while it is already February and I am still trying to feel my way through this, the part of me that is being purposeful about this is already feeling healthier and more stable despite not having anything "written out" quite yet.
As my poor brother will tell you, there are times that a word can cause me to snap. Unfortunately, my brother was shocked by my reaction when he said something that I completely misunderstood. It was not mean or hurtful but a truth in a situation. The word that was said is one of the triggers that seem to carry me away from the location that my body is in and back into the diagnosis room. The room when all of my hopes for this being something that she will outgrow flew right out of the window. And while that day will forever be marked D-Day in my mind, I would not be the person that I am today had I not been given this amazing child. Who is the strongest, bravest, most positive person that I know. She gets knocked down, literally, every day. But still she comes back and fights to be able to do what her brothers and sisters are doing, what she is interested in, what she wants to accomplish, and what her therapists/doctors/parents want her to accomplish. She works hardest for those that she loves, and she loves BIG. Because when she smiles, as Louis Armstrong would say, the "whole world smiles with [her]." She is a gem and she has taught me more about life than any class in my younger years or that I ever took in my behavioral sciences degree program.
No matter how long you have been doing this, you can never know what will happen next. Fight for the future, revel in the present, and learn from your past. Nobody knows how long of a life you will have. You could be gone tomorrow. Unfortunately some medical conditions make us all the more aware of this.
I have been to more children's funerals and remembrance ceremonies than I ever thought possible, and I know that my number is just a drop in the bucket compared to some of the leaders of a rare children's support group that I am part of. It just isn't fair and I really hate that this could be us someday. In fact I refuse to think about it. I pray that God would take everything away before he takes any of my family. Even though I know that it doesn't work that way and that God is control of everything and everything that is His plan is perfect and better than my plans ever if I do not understand it and do not want to endure it. We share information about Avagrace and her condition, within the parameters that we have set. We participate in several epilepsy organizations. And we homeschool Avagrace. I participate in a support group that means the world to me even though I have not been able to go in quite some time. They probably think that all I ever do is talk because by the time I get there I am like a volcano ready to erupt because I know that whatever I say stays within the group and they actually understand what this life is like.
I have known one child that an entire state seems to know. Because of her diagnosis her mom was prompted to change the state practices for the good, start a support group, and reach out in so many more ways that I could list on this blog. She has shared what it is like to bring your daughter home on Hospice and watch her slip away to heaven in her parents arms. This mom is amazing and has become a face for special needs families.
I have known a wee one that lived for a little more than an hour and her life was no less valuable than any other. She reached thousands of people from across the globe in that hour, she was also able to donate organs to save lives and aid in research. Her parents and siblings continue to share the love that they have for her while raising awareness.
I also know of a very sweet family who is very private. Their family and close friends know about their sons rare diagnosis as does their church and their sons school. They do not participate in fundraising or put their sons story online or in writing. They are active within their diagnosis foundation, meaning they donate to help find a cure and they go to medical conferences, but they do not allow their son to be named on the foundations website or registry. Their son goes to public school. They have had a tremendous impact on the ones close to them.
Impacting someone is what is important and what will change the world and help you to take this challenge and make it a force for good, the number of people you share with is not important.
Sometimes raising awareness, and reaching out to other parents like ourselves (meaning other parents of special needs kiddos), is all that we can do to make this life a little brighter. Additionally, the more people that learn about special needs and medically rare children, the more research can be done to make their lives a little bit brighter. But it also can speak volumes to people on how to love others and how something as small as a frozen dinner, or a little help with laundry, can literally change the lives of families like ours. Even if it is just a one time thing, that gesture can renew our spirits so much that we are holding on to the excitement of that love for weeks, just like a kid with a new Christmas toy. If you have a church or a family or a friend that offers to help (I am speaking to myself here too, because I am terrible at this sometimes) please allow them to help! It is a blessing to both parties.
So to the lady leaving the doctors office. I do not know you or your precious child. But what I do know is that your child is wonderfully made and made in HIS image. She was not a mistake air a mishap. She was chosen and you were chosen for her. What I hope that the doctors told you in the diagnosis room is all of this. And I really hope that people/doctors/nurses/therapists/friends continue to tell you when you share with them about your child is that your child is a blessing. Your child is special, 'she' is unique, and 'she' will make you appreciate each and every day more than you ever thought possible. You have hit the lottery, the jack pot, and while it will be challenging-nothing worth anything is ever easy. Even typical children bring challenges (especially 12 year olds who are wise beyond their years lol-jk). But it is all relative. Relative to your wisdom, knowledge, abilities, and circumstances. You are on a different road and should not compare yourself to others, although it is hard not to. You will learn to appreciate the little things and realize that life is about the little things. You will be stronger and able to handle set backs without a second thought or glance and you will be able to see the positive in situations where others only see darkness. You will rejoice and appreciate each accomplishment that your child makes and you will be more purposeful in looking for the positive. These are just a few things that I have learned and that I wish someone would have told me in the very beginning. So that when I got the diagnosis I would have found ways to be more positive instead of laying in bed at night and just crying and thinking of the worst. I never imagined that I would get to my daughters 11th birthday that is coming up in June. In fact, this time last year I was told that she would have been gone by now. But nobody knows that information, aside from our creator, and the good thing is that I will continue to learn and see true and tangible miracles as will you! As I said before it is all relative, so one lesson for me may not be as valuable to you. But I hope that this helps in one small way. You can do this and not just because you have to, but because you are fully capable of moving mountains, just believe in yourself and your abilities as a mom.
I do hope that I see you and your adorable daughter again. Next time maybe I will have the courage to say Hi! And next time, I hope that you have found a rhythm to your life that helps you to smile more and cry less. I will be praying!