Smiling through the pain

People will tell me all the time that I am so strong. I appreciate the sentiment but I sure don’t feel it at times. Part of my problem is that I don’t like to let people in and I especially don’t like to be emotional in front of people. I can have a pretty tough exterior but it’s the things that people don’t get to see that show you the truth about someone. I have known families that lost their children and I see their post on Facebook and I can’t imagine how they feel but I'm sure that they have a lot more hurt than what they write. Nobody sees me when I’m lying in bed and I’m praying for Skylar and crying for hours on end or when I get a call from ARORA and they are explaining their process and to her I sound like I am very understanding and upbeat but the truth is every time she starts to talk I start to cry. Sometimes this gets the best of me and I’m not ashamed. I am a mom whose heart is breaking and no matter what I do the outcome will remain the same. The worst Skylar feels the more emotional I get. I hate that I am at work and I know she’s having a bad day at school. I want so bad to take her home and love on her. I am anxious and on edge the entire day. Seeing her is about the only thing that calms me down. I know that she’s here and safe and I can be with her. It’s something about being away from her all day and finally getting to see her again that puts me in a peaceful place.

I think I also punish myself. I like order and I like to plan things. It’s my nature and I’ve always been that way. The same applies to Skylar and this situation. I wanted everything taken care of so that I could spend all of my time and energy on just her. I didn’t want to have to plan anything after the fact. Planning it while she is here is hard enough, but I am still able to face the hard things and go home to her. I know that I wouldn’t be in a place to make these decisions after the fact. I’ve been able to think about what I would want and how I would want it. However, it takes a toll on you. It’s hard to plan a funeral for your child and pick out their casket and where they are going to be buried. I don’t think that any parent should ever have to do that. I had to go visit the funeral home on Saturday to get a quote for the headstone. I was there for over two hours talking to the funeral home director about what I wanted and how I wanted it to look. It’s going to be a custom headstone...Imagine that. Just sitting there and going through the process I’m not sure how anyone makes the plans after their loved ones have passed. To be honest I wanted to punch the lady by the time it was all said it done. She was very nice and I consider myself a very patient person but she was really pushing me to my limits. I can only imagine how people would feel trying to plan all of this right after their loved one passed. It’s overwhelming and frustrating and heart breaking. There are still some parts of it that I still can’t seem to want to think about. I try really hard to get things in order and to plan as much as I can so I can avoid it being thrown in my face all at once but it just makes things seem so real. I had someone tell me that it’s very sadistic to think about all of these things and plan it out. It may feel that way to them but I want to be in charge of my decisions and the things that I want and I just know that I will be too emotional to want to deal with any of it and I would regret it.

I’m not sure how to do this and I have really bad days and they seem to be coming more often and last a little bit longer. I pray every night for strength but the truth is I’m devastated and I want to scream some of the time. I’m mad that I have no idea what the future holds and it breaks my heart that Skylar might not be here on some of the biggest moments of my life. I want so bad to not work and stay home with her and spend every day of her life with her. I have to take it one day at a time and that’s really hard on me. It’s something new every day and by the time the day is over I am exhausted. Days like today make working and everything else seem so insignificant. I have spent at least a few hours talking to doctors, the nurses and her teacher and the only thing that I can do is sit at work hoping that her day gets better. My heart aches on the bad days because this is not what I want for her. I miss her laugh and her smile. I haven’t seen it in days and I fear for the day that she’s having such bad days that I don’t ever see it. If I seem strong it’s because I have a daughter who has taught me so much about life and how to be strong. She has taught me to smile through the pain because that’s all she’s ever done. God has given me the strength to be the mom that I am but Skylar has shown me the kind of strength that I need to carry on and not give up. She continues to be strong so I will continue to be strong for her. Especially on the days that she can’t be.

A lof of Story Left

I remember when I got the phone call from Dr. Stanford telling me Skylar’s diagnosis. My parents were in my hospital room. I had never heard of Schizencephaly. I was a single mom and now I have a child with a rare birth defect that is the worst case they’ve ever seen. It was assumed that Skylar had Hydrocephalus and we had talked with a Neurosurgeon while I was pregnant and we discussed a shunt and everything else. I was preparing for her to have surgery and then once they got the fluid off she could be a normal child or at least be able to do some things a typical child would. Well I found out that day that it would probably not be the case.

It took me awhile to Google Schizencephaly. I wasn’t sure what I would fine and I was scared that it would say that people with Schizencephaly didn’t live for very long. I finally decided to research it to see what information I could come up with. I knew that I would have to be Skylar’s advocate and I wanted to be knowledgeable about her condition and everything else about her. When I finally Googled it not much came up. You have a little information here and there but it’s truly a very rare birth defect. The causes are unknown and nobody can tell me how this happened to my child. The only thing that they do know is that Skylar had a stroke in utero and that is how she was born with Schizencephaly.  I appreciate the information of what caused it but it frustrated me that nobody could tell me how it happened. I blamed myself for a very long time. I was her mom and whatever happened to her was my fault. Since I was the person that carried her it was my fault that she was born with this. I was a failure as a mom that I could let something like this happen to my child.

As Skylar got older, we had more and more visits to ACH as well as hospital stays. It became our home away from home. However, it didn’t matter how many times we went to ACH we could tell someone what her diagnosis was and they had never heard of it. We went to Memphis for a week for video EEG monitoring for her seizures and there were at least 5 nurses that took care of her that had never heard of Schizencephaly. After a while, you recognize the people that have no idea what it is. They will ask you her diagnosis and when you say Schizencephaly they will look at you with a blank stare and just say oh. It’s obvious that they have no idea what it is but I can bet that they go to the closest computer and Google it, if they can spell it that is.

The hardest part about Skylar’s diagnosis is that there is no cure. I know nothing more about Skylar’s condition than I did 8 years ago. I know more about the brain and how it functions and things associated with it but 8 years later people still have no idea what it is. There’s also not much research on how this happens and what can be done to prevent it. I feel that it’s my purpose to help bring awareness to her condition. I have become part of a few birth defect research boards and I’m hoping to start advocating with March of Dimes and the big goal that I hope to achieve one day is to start a foundation that can bring awareness to Schizencephaly. I would love to help fund research so they can find out what causes babies like Skylar to have a stroke in utero and what can be done to prevent it. I want more people to know what it is and understand the severity of it and how it affects children and their family’s lives.

There are disabilities out there that are popular and well known. They receive millions of dollars in funding to help with research. You hear about them everywhere and while that is great for them and their families I hope that we can be the same way with these rare diagnoses.  Like I read on the internet, Skylar’s diagnosis is the most catastrophic and children do not live very long lives. Sadly, this is the case for Skylar and there’s nothing I can do to change that. I can’t change what happened to my baby but I hope to one day prevent it from happening to another child. I am Skylar’s advocate and I know just about everything about her and have a rolodex of information that I have stored over the past years in my brain. People find it impressive I just find it essential. One day Skylar will leave this Earth and the privilege of being her caregiver will be done but being her voice and her advocate will live on for as long as I have air in my lungs. Not every story has a happening ending no matter how much we pray for it but as long as I am able I will tell her story and share the importance of awareness and knowledge. I don’t feel as if our story is coming to end I feel like we are right in the middle of it and we still have a lot of story to tell.

Updated Bucket List

Exciting things are about to happen with Skylar's bucket list. I can't wait! Here is her updated bucket list!

The D Word

I get an email from a lady at Hospice this morning and she told me that 23,136 people have seen the post that they put on their Facebook about Skylar, 400 people liked it and 155 people had shared it. I couldn’t believe that 23,000 people had seen it. I was excited. For some reason, when I read what they had typed up about her a part of it didn’t sit well with me. It was very well written but part of it just stung a little bit. I don’t mean this to say that what they wrote offended me or that I didn’t like it. That’s not what I’m trying to convey. I have just never said to anyone that Skylar is dying. I feel like this whole situation is surreal. She’s here and she still laughing and smiling and I wish that it was not true. I wish that they were wrong. The thought of her not being here one day doesn’t process to me. I can’t imagine going one day without seeing her and not being around her so I can’t process the idea that she will never be here with me again. I think that’s why I refuse to use the word dying. That might be the case but to me I just can’t come to grips with using that word. I know that one day that it will happen but my heart and my mind hasn’t accepted it yet. When I am not with her, I know that in a few hours I get to go home and hold her and hear her laugh and be with her. My mind cannot process going home and she not be there or never getting to see her face or hear her laugh. It just feels empty. I don’t dwell on the idea that one day she will not be here because again I can’t seem to fathom it anyway. I try to focus on her life, her legacy, and making sure that she has the best life that she can. I pray that people hear her story and that her life makes a difference. This process is hard. It’s harder than I ever thought it would be but I know that it doesn’t come close to what I will feel when she’s no longer here. Just like my Pastor said a few weeks ago, I have never prayed harder for Heaven than I have in last few months. There are people that I love on this Earth but if I could join Skylar and never have to live one day without her and to be in Heaven with her, I would take it in a heartbeat. I wish that the process prepared you but from what I gather nothing prepares you. You’re never ready and it sucks to put it honestly. My heart aches and sometimes I have really bad days that make me feel like I can’t breathe. I have many talks with God telling him that I’m not ready for this and I can’t do this.

We went to see God’s Not Dead this weekend and I can see how having a special needs child and to have a child pass can test your faith. The professor in the movie felt that if there was a God why did he let bad things happen. Why did God take everything away from him? I think it would be easy to be mad and question why God let this happen. He has a purpose and a reason for everything and I don’t understand it and I don’t even agree with it but, in time, I hope to understand his purpose. I hope to gain clarity and understanding. It’s very hard to look at the blessings in my life and to say that God doesn’t exists.

I pray for strength and I pray that when the D word gets thrown around that it doesn’t derail me from what I want to accomplish with Skylar. I can’t spend my time worrying about when things are going to happen. I have a little girl who has a lot of life to live and I’m going to do whatever I can to make sure that it happens!  

My public school fears washed away by blessings...

Skylar started a special needs daycare called Francis Allen or The Allen School when she was 6 weeks old. Thankfully a wonderful woman, that I’ve known for as long as I can remember, worked there and was able to really help us with information. We absolutely loved it there. I was constant communication with the teachers and the therapists. They had a real love for Skylar. As Skylar got older, I was so worried about public school. I toured some private schools for children with special needs and their first question was always can Skylar walk, talk, sit, stand, and is she potty trained. When I would say no they would try to politely tell me that she can’t come to their school. I was stuck with going to a private school and I didn’t like the idea. I didn’t think that a child liked Skylar belonged in a public school. I feared how they would care for her and if she would get enough attention. I had the option of going to big Bryant or Davis Elementary. I didn’t like the idea of going to Bryant. The school was huge and there were too many kids. It just made me fear public school for Skylar even more. I sat in a meeting with the therapists that Skylar would be seeing and I brought my whole team with me. I had all of Skylar’s therapists with me, administrators, and teachers. I was thankful to have them with me because I was not happy about the process. Overall it was a good meeting. I wasn’t not happy when I was told Skylar would be getting less than half of her therapy. Everything was so great at The Allen School why do we have to leave? I kept hoping that they would raise the age limit.

We attended a 25^th Anniversary for Skylar’s school last night and they were recognizing the teachers at the school and it had me thinking about her time there. It has been a process and every year something is changing. Skylar’s kindergarten year was a hard year. Skylar was in an accident in her wheelchair that resulted in a brain bleed and required a shunt to be placed. She went through 5 shunt surgeries in a year and a half. We were in and out of the hospital and it was a very stressful year. Things have progressed since that year with Skylar being placed on Palliative care and now Hospice care. She’s only in second grade but it feels like I have known the people at Davis for much longer because of everything that we’ve gone through. They are wonderful to Skylar and me. I was worried about Skylar not getting enough attention and it’s almost comical because she gets so much love there. One of the things that I loved and is not long after Skylar had started school I would walk the halls and everyone who say hi to me because I’m Skylar’s mom or they would all talk to Skylar when we would come into the school. The small school atmosphere was incredible. It was such a warm feeling to have the staff and the kids know Skylar. They take the time to know all of the children and it’s very special.

Skylar would not be where she is now without the people at Davis Elementary. The nurse at the school, Barbie has been a godsend to us as well as her teachers. They keep me informed of everything and they truly love and care about Skylar. I know that if she’s not with me that she is in the best hands. When they requested to talk to hospice about Skylar I was a little surprised. I never thought of how others would be affected by Skylar’s progression. They are with Skylar every day and they see her on most of her worst days and it would take a lot out of on anyone. Skylar is truly loved by that school and she will be missed I have no doubt. I am thankful for them and last night made me want to recognize them for what they have done for us. God knew what he was doing when we put us there. So I want to thank them for everything that they do and continue to do to take for Skylar. I’m not sure that they knew that they were taking on such a challenge when she started there. She keeps them on their toes and keeps them guessing from one day to the next. I wake up every day praying that today is a good day but I have no worries or fears when she’s in their care. Thanks for all that you do and for taking such good care of my girl. We love you all dearly!

To Baptize or Not to Baptize....That is the question.

I wasn’t sure if I was going to write about this but this is something that is very important to me that I feel I need to explain. I will say this first that there have been opinions from many people and many different churches. This is not of the opinion of one church or one person. I am not writing this to speak poorly of any one person or of any church.  I just want to simply give my opinion, thoughts and feelings on the subject.

I have prayed and thought about having Skylar baptized for a very long time. I have never brought it up nor have I ever asked anyone until recently. I was ignorant in my thinking that everyone would be on board and they would be so happy to see her be baptized. I never thought that there would be a difference of opinion. I don’t fault them for their reasons and I don’t disagree with them in regards to what the Bible says. However, the majority do not feel the same way. This is my thoughts and feelings on the subject.

Christ came to save everyone and his mercy and justice and love is for everyone, not just what society deems mentally well or fit. Christ is the Good Physician, He came for everyone and had Skylar been alive when Jesus was on earth I have no doubt that he would have healed her and baptized her. However, in 2014 it’s not possible and I have the mindset that if Jesus were here in this day and time and Skylar was the same little girl that she is now that Jesus would not deny her to be baptized because she is unable to verbally say that she believes in him. How God deals with individuals such as Skylar is not revealed to us in the Bible. We do know that God is love and that He is merciful and gracious. If His love is limited only to those who, for no other reason, are incapable of receiving that rite, then it strikes me that salvation becomes a matter of works and not faith and grace, as such, is manifestly unjust.

Baptism is a work of God, not of man, so God is not dependent on the mental faculties of the person. Think of the centurian’s servant who is healed because of the faith of the centurian, or the paralytic who was healed and forgiven because of the faith of his friends. Or the Canaanite woman who interceded for her daughter, healed by Jesus through the faith of the mother. God accepts the faithful intercession of another person on behalf of the one who is unable.

I know without a doubt that Skylar is perfectly ready to enter into the Kingdom of Heaven prepared for her by Christ. As Skylar’s mom, I can see the love that Jesus has for her and for our family. It is not a requirement for Skylar to be baptized but as her mom this is something that I’ve always wanted for her. She was not given the ability to confess her love for Christ or the ability to ever reach the age of accountability so because of that she is saved. “Go and make disciples of all nations, baptizing them in the name of the father and the son and of the Holy Spirit, and teaching them to obey everything I have commanded to you.”  The church mandate is to reach every child for the kingdom of God. We are the seed planters. We can depend on the Holy Spirit to know and reveal a child’s spiritual capacity. We need to prayfully teach the Good News, children will believe God’s promises and share their faith story as they are able. All children are capable of experiencing God’s love in amazing ways, even if they are severely disabled. We don’t need to know each child’s accountability in order to be able to introduce him/her to Jesus. God sees every heart and he is faithful to bring forth spiritual fruit from the seeds that we have planted through our teaching and or love for each child with special needs. Children with special needs model the values of the kingdom of heaven, in which the innocent and pure hearted are treasured and their weakness reveals God’s strength.