I am posting this for a few reasons and I think it is important that I preface it lest anyone think I have taken a leap off the deep end. This is something that I wrote a few weeks ago with the intent of keeping quite private. Just between myself, the computer screen, and God. I printed it, I burned it, and I released it. Then, as I continued to be prayerful about it (asking the Lord to fill that place of anger with peace and acceptance)… I felt that wasn’t fair. It isn’t fair of me to post on a blog titled “Special Needs…Normal Desires” and not share the special needs part. It isn’t fair that so many times in our darkest hours of parenting we are made to feel that we are inadequate. We are made to feel that everyone else is “managing” better than us.
If you talk to me in real life often…you will most likely hear me say that we as mothers set up one another for failure. Everyone acts as if they are going through everything with a smile on their face and in their heart. Sometimes? you HAVE to lose it … in order to find a new balance. Sometimes? you HAVE to be angry, to ask for help, and break down… in order to put the pieces back together. For me? That time usually comes about this time of year (although in minor doses throughout the year) because Alyssa’s birthday approaches and it is a time of evaluation. Whether I want it to be or not. Each year with a special needs child you wind up answering five hundred…and ten … questions about what they are doing, what they aren’t doing and what they should be doing. As a special needs parent? You do it. You do it because you know that the answers to those questions are what provide your child with each and every opportunity you can possibly get. You WANT that. You WANT to provide your child (special needs or not) with each and every opportunity that you can.
At any rate, the letter that follows is raw. The letter is to IP. I know through my on-line time that I have encountered special needs parents who just struggle to cope with the anger they feel toward the disorder their child suffers. It is NOT resentment or anger toward the child. I LOVE my daughter (and the letter to her will follow in a separate post). However, I can love everything she is a bit easier after “releasing” this into words. This is the first time that a birthday has been only a few days away and I have not felt like puking about it . Like I said, I intended to keep this private, but I am hoping through sharing it that it will help at least one person realize that what they are feeling is OK. I have been so blessed to have friends who have opened their mouths and their hearts and been honest in their feelings. I have had friends that have gotten raw with me. I know full well that not everyone has that blessing in their life. So… well… hopefully this helps. Someone.
I feel the need to write you today. Well, to be completely honest? This has been a long time coming. This is something that should have been said from the beginning. However, I suppose that I needed time to reach a point where I could truly tell you how I feel. I don’t know that I am even there yet, but I do know that your presence in my life has begun to overshadow my relationship with my daughter and that is not an OK thing for either of us. I know that you cannot leave. I know that we have to find a way to live together, but the space you are currently occupying in my heart needs to be vacated. I understand that you think you belong here. I even understand that you need to be here. However, there are some things you need to hear if you are going to be a part of our lives in a functional way instead of continuing down this path of…well I don’t know what to call it… all I know is that this is the end of that road.
Let me cut to the chase here… I hate you. I *HATE* you. I do not use the word hate lightly anymore after learning what weight it carries in certain people’s vocabularies. So, please, know that I mean it. I hate you for everything you do to my family every.single.day. I hate that you make things that should be easy a challenge. I HATE that you have found a place in our lives. I mostly hate the fact that you came with zero warning. That you walked into our lives without asking permission, without giving us warning, and without giving the people in our lives the knowledge to know how to handle you being around. I hate that you have found a place in my heart that is dark. I hate you. I don’t like myself for it…but… it is what it is.
You have made me see things in myself that I never wanted to see. You have filled me with rage in ways that I never knew I could be filled. You? Shattered a bit of my world. For that…well I’m still working on forgiving you. You make days that should be easy … a challenge. You have the ability to ruin a day in a way that should never happen. I just don’t get how you think it is OK to take over so much of a person’s day. You made it a challenge for me to find a way to accept my own child! You took away hopes and dreams that I had had for decades … in an instant… and you? did it with no remorse. You make things a challenge. You fill life with appointments, specialists, etc. You do it without even considering the fact that it puts a strain on my family emotionally, mentally, and financially.
I know that this level of hate isn’t healthy. I know that seeing you fill my daughter every day and resenting you…isn’t healthy. I know that if I don’t tell you this now and get it “out of my system” that it will grow into an even bigger storm over the sunshine in my life. I refuse to give you that power any longer. I’m taking the power back. I realize that it isn’t fair to hate you for everything you are, everything you do, and everything you prevent from happening. I want to get past that. I want to get to a place where I accept the fact that you are a part of our lives, a part of my daughter, and you are not here to overshadow the good in our lives. I think in order to get there there is some stuff I have to say “out-loud.”
First, did you have to try to hide? I mean, I am grateful for the first hours that you completely hid…but after that? Did you HAVE to make the first five weeks of my daughter’s life a roller-coaster that no one should have to ride? Did you have to make me unable to hold my daughter? Unable to touch her without gloves because no one knew for certain if it was some random bacteria that could be spread. Unable to have my family at my side when I was at hers? Did you..really? Did you have to make us worry and live in fear? Why? Why couldn’t you have just admitted you were here, given the first doctor that saw her the knowledge to say “Oh, it’s IP!” Instead of making us walk through those weeks numb. Instead of making us wonder what the next day would bring. Why? Why couldn’t you have just made it the easiest it could have been.
Second, do you have to be such a broad spectrum? Do you have to leave us continually wondering what the forecast is? I just don’t get the fact that some days you are next to nonexistent and others I feel like you are all that is around. I know it isn’t yours to tell and that only God knows what you have on the agenda for the days, months, years to follow. Yet? Somehow? It just doesn’t seem right that every action, success, etc… is hindered by YOU.
Third… screw you. No, no. Really. Screw you. You took a piece of me. You took a piece of my heart that I didn’t want to give. You filled my brain with information I NEVER wanted to know. YOU took away my ability to just “be.” You took away so much that I didn’t even know I had. You forced me to mourn the loss of a person I will never meet. You robbed me of so many things. You robbed my daughter of so many things. You … I just wish you didn’t exist. I wish I could make you not a part of our lives… but I am not willing to sacrifice my daughter to make that happen. YOU are the problem here but somehow SHE has the ability to put you in your place and walk with you with grace that I could only ever PRAY to have.
Fourth, you fill life with QUESTIONS. Oh.my.goodness. THE QUESTIONS! Could you have AT LEAST given me the frickin answers?! Thankfully God has given me the grace most days to handle the answers, but really… the questions. The fact that I get filled with dread as each of my daughter’s birthdays approaches because I KNOW that birthdays bring evaluations, reassignment’s, and questions!! The “when will she walk?” “will she talk?” “how was her appointment?” “what did the doctor say?” “are you really OK?” “when is her next appointment?” “what is the plan?” “when is ____ happening?” “what’s that on her skin?” “isn’t she hungry?” “how come she’s not gaining weight?” “is her head gonna grow?” and on and on and on and OOOOOOONNNNNNNN. Most days? I can handle it. Other days? I want to scream “GO ASK SOMEONE ELSE!” … I know that isn’t fair. I know that because you are here my life will forever be filled with questions I don’t want to have the answers for. I will just continue to pray for the grace to answer them, for the knowledge to educate people on who you are, and for the patience and calmness of heart to do it gently without becoming offended. Why? Because I know that most people ask them with a good heart… that you are the one who makes the questions hard to answer…not them. They just want to know who YOU are. What YOU are doing to OUR lives. At this point…I’m not sure even *I* know anymore.
I know that we were chosen to raise this little girl with you in her life because we *can* do it, but some days… I JUST DON’T *WANT* to do it…I JUST WANT YOU GONE! You and every question that comes with you. You and every comment from a stranger that comes with you. You and your snide way of sneaking into every aspect of life. You and your mysterious ways. You and your bringing that look of pity that strangers get. I hate that look. That look that you NEVER see until your child is “different.” You brought it into our lives! F*ck you for that. F*ck you very very much. I could have lived to my last of days NEVER knowing that look. NEVER having a stranger ask me “is she ok?” as my child sits giggling. Um… YES! She’s fine. Thank you very much. You and your way of making people see YOU first instead of my daughter sometimes. You suck! My daughter? She’s awesome. SHE should be seen before you. At.All.Times. So, tone it down a bit. PLEASE. I BEG you. TAKE A BACK SEAT. Let her be who she is. Let yourself be a part of that, but LET HER BE! Let her THRIVE. Let her continue to OVERCOME every obstacle you lay in front of her. PLEASE PLEASE do NOT become bigger. PLEASE ride shotgun. She doesn’t deserve for you to be the driver. She is strong enough to be your leader. Please let her lead. I BEG of you. Let her triumph. LET her. ALLOW her that. Allow her to be the person who helps the world to see that you are NOT all bad. Allow her to be the best person she can possibly be with you in her life. PLEASE. I ask you this with every.fiber.of.my.being. PLEASE let her continue to put you second. I will do my part to see you second if you continue to let her shine. PLEASE. I cannot walk through this life with YOU driving. Let her be exactly who she wants to be. Please.
Finally, as much as it pains me? As much as I never ever ever wanted to have to tell you this? Thank you. Yes. I said it. Thank you. Even typing it makes my hands hurt a bit. You see, I don’t want to thank you. I don’t want to come to terms with the fact that your presence is something to be thankful for. However, I need to thank you. You see, my husband and I? We had it all figured out. We had this happy little life planned. We did everything “right.” We made a safe place to bring a new member to our family. We opened a place in each of our hearts. We? Were ready…. for normal…for typical. We? were prepared! Then? We got the wind knocked out of our sails. Doesn’t seem right to be thankful for that? does it?
The fact of the matter is that without you, I wouldn’t be me, my husband wouldn’t be him, and most importantly my daughter wouldn’t be her. Before you walked into our lives there was quite a bit of cynicism that filled our hearts. What is the world coming to? No one cares about any one but themself…etc..etc. Then? You flipped our world upside down. You managed to bring me literally bawling to my knees crying. That is something I had never before done. You showed me that strangers could open their hearts to a family, that God was worth the time to pray, and that my husband and I could conquer anything together… with our daughter in tow and God on our side. So, for that? I will thank you.
I also want to take this time to tell you I am going to do my best to get to a place of acceptance. I don’t want to hate you. Sure, you have made life more of a challenge, but you have also brought people and emotions into my life that wouldn’t be here without you. That is the main purpose for this letter. I’m letting go of the anger. I’m letting go of the person that I thought my daughter would be without you in her life. I realize now that although you hold her back from *my* dreams… the two of you will carve a path together. I trust you to let her lead the way and follow her along that path. I am moving toward a place where I know that you are with her to make her exactly who she is, who she needs to be, and who God made her to be. It will take time but each day will bring me a little closer. Please give me that time. Please understand that when I get mad at you… I’m still grateful for the blessings you bring. Please know that when I cry because you are around… I wouldn’t change the person that you make my daughter. Most importantly? Please know that I’m grateful you’ve given me the ability to reach belief in the Lord, because I know I couldn’t make it through one day of this without Him. I know that is a fact. I know that my belief would not be as strong without you around. Thank you for that. Thank you for showing me the good in people even if it means that sometimes I have to see more of the bad in myself. Thank you for bringing a balance to my life that I couldn’t have found without you. Thank you for giving me the time to grieve and to reach a place where I could tell you how I feel.
Thank you for listening,