They’re growing up

The past two weeks with our daughter having moved out and our oldest son, Sam, in Brazil for a month has made me realize something, they’re growing up. We are quickly entering another phase of life when our children leave the house. Not that Sam will be moving out soon, but when he comes home he will be different. He will have grown up some on this trip and will soon after be getting is license and started classes at CPCC in the fall. He’s not going to be the same kid we have had for the last 16 years. And college and moving out are not far away. And his younger brothers are right behind.

It all hit me the other day when I was changing the sheets on his bed and missing him like crazy. It’s all changing very quickly and I’m just not ready for it. When you have babies and toddlers still in the house you think your kids will live with you forever, but it’s just not the case. It all happens so quickly, one day they are in diapers and you think it will never end and then the next they are leaving for a foreign country for a month and registering to take the ACT.

As I inch closer to 40 this year I realize how quickly time goes and it really makes me contemplate how I spend my time. I’ve been thinking about how to slow down more and spend time on the stuff that really matters. These 18 or so years I have with each kid, did I do what I set out to do with them? Did I make lifelong memories that were good and did I teach them everything I wanted to for them to be successful adults? I’m learning that looks different for each child but it all takes time. Time is the only thing I cannot add to or take away. We all have 24 hours each day. How do we spend that time? If we say yes to one thing, we are saying no to something else and vice versa. When you are bogged down in raising kids it’s hard to see that. Everyday feels the same and like it will never end sometimes. Endless laundry and diapers and soccer practices. But within a blink it’s all over and your kid is headed out the door to adulthood. This really started to hit me when Sam hit high school but now that he is halfway through it is even more real. We went to Disney this summer and to Miami. It was the best trip we have ever had. We all really enjoyed it but we almost didn’t go. Our daughter was just starting to really struggle right before we left and we had an 8 month old. It seemed like a bad time, but we pushed through and I’m so glad we did. It’s not just about going on big trips and things, but also the day to day. Having a family with lots of needs makes me want to just stay in the house all the time, it’s just easier. But if we want to make memories with our older kids we can’t do that, we just have to push through.

I want to make each minute count, but that means making margin in my life for those special moments. I can’t be running around crazy all the time and expect to have time to stop and just take a special moment with my kids. I have to allow down time for unexpected moments. I don’t want to fill up every minute even if it’s with “good” things. There are many good things, but I have to pick and choose. Sometimes I have to say no to a good thing in favor of a movie night at home with the kids. Or a walk around the block or a meaningful talk. Those are the best things!

Q & A

I’ve been asked many questions lately and I thought I would share them here:

 

How is Kaki adjusting to her new home?

Really well. She is really enjoying her new “brother” (the boy who is living in the same home who functions like her and is her age) and her caregiver. She is eating well and sleeping well which we are very thankful for. She has had some ups and downs, which was to be expected but overall she is doing well. She has been out of school since she moved and that has been good for adjusting to her new home. She will start school again Monday which I know will be good for her, because she will continue at her old school which she likes.

 

How are you guys doing since she moved?

Good. It has been really weird since school has been out, Glenn is home on winter break and Sam left shortly after Kaki to spend a month in Brazil. Nothing has been “normal” yet but we have had lots of time to just chill, which is what we have needed after a very trying fall. We haven’t found it as emotionally difficult as we thought it might be. I’m not sure if that’s because we did a lot of pre-grieving this fall or because it’s still coming. Probably both. It has been relieving to not have to deal with the constant physical and emotional weight of dealing with Kaki. We both feel very much at peace with where Kaki is and that it’s the best place for her, although it isn’t how we envisioned it originally. We are learning that sometimes things don’t work out like you want them to. Sometimes you don’t get the happy ending you wanted and you just have to go on with things that are less than perfect and that’s okay. We are dealing with feelings of failure and frustration, but ultimately just because something doesn’t go the way you want it to doesn’t mean it’s a failure. I still believe God has a plan and it’s good. It may never be what we wanted or saw it being, but we are still trusting. We may not see redemption until she gets to heaven but that’s okay.

 

Is she still your daughter? Is this foster care or something?

Yes. she is still our daughter and we did not give up legal rights or anything. It is not foster care. She is living with a caregiver and that’s all. But I know it’s a confusing situation and people have lots of questions and don’t understand it all.

 

How are the boys doing?

Very well so far. Joshua now has his own room, he and Kaki used to share. We repainted it for him and changed things around and he LOVES it. We have seen less behaviors from him the past couple weeks and he seems to really do well having his own space. The other boys are adjusting well. They say the house seems quieter with her gone and I would totally agree. We are less stressed which leads to the whole house being calmer.

 

Do you get to visit her?

Yes we will. Right now we are giving her some space to adjust for the next month, but after that we will visit her whenever we like. Most likely we will bring her to church a couple times a month to spend some time with her. We don’t believe it would be wise to ever bring her back to our house, we think that will confuse her.

 

Is this where she will live long term?

Yes. As long as things continue to go well she can live with this caregiver indefinitely. We are thankful for that stability.

 

How are you paying for this?

It is not cheap. I will tell you. We are blessed to have gotten help in the form of the Innovations Waiver from the state for disabled people which pays for most of the expenses. Right now though we are paying her room and board out of pocket, which is expensive. However, we have applied for disability which will cover those expenses and should be approved within the next few months, which we are thankful for.

 

Happy Birthday Mom

Four years ago we celebrated my mom’s 80th birthday. These are just some pictures from that day. It was such a great day. She loved every minute of it and especially everyone who came to celebrate with her. I can’t believe she’s now spent two birthdays in heaven. This year has been easier than last year was, but I still miss her like crazy. It’s the little things I miss. I miss most of all talking to her. This year has been a hard one for me. So many big things have happened and I really wanted to talk to her so many times this year. She was always so good at listening and giving good advice. I tried to think what she would have told me if she was here. I know she would be telling me that we have made the right decisions and that things will work out and God has a plan, but I just wish I could have heard her say the words.

Mom, today on your birthday I wish I could tell you I love you and give you a hug. Someday I will again and I look forward to that. It’s that hope that gets me through the days I miss you. Today we will celebrate your life. We will have your favorite meal and a dessert you would have loved and talk about how much we love you and miss you. I know there will always be an empty spot for you in my life, but it’s not as hard this year and I’m thankful for that. I didn’t believe it would get easier with time but it’s true. I love you so much! Happy Birthday!

How are you feeling?

It’s been a roller coaster lately with our daughter. She just got released from a 10 day stent in Levine Children’s hospital where they attempted to try to find a cause for her episodes she’s been having. They determined they are not seizures, but we really don’t know what they are. They called them “environmental” because she only had one episode while at the hospital. We aren’t sure why that is. But every doctor we talk to seems to think that maybe this will improve when she moves to a new residential setting. We are hopeful that is the case.

Back in September we applied for and were granted emergency money in the form of a Medicaid waiver called Innovations Waiver. I joking call it the golden ticket for kids with disabilities. It means that the rules about income are waived and she can get medicaid and also get related services such as residential placement, therapies and medical equipment she may need. It’s a huge blessing for us. God has provided and we know He is leading us in this direction. We have decided it would be best for her to be placed into what is called an AFL (Alternative Family Living). It’s a private home of a caregiver who has one other child with a disability and herself in the home. So it will be a much quieter environment than living here with six brothers. She will also get therapy and other things that will hopefully help her. And we will get support in the form of relief from the daily care of her. She is become increasingly difficult to care for over the past year or so. This new caregiver will also take her to all her doctor’s appointments, which are many.

We finally got a move date for her which will be December 24. It seems like a bad date from the outside looking in, but really for her it will be best. She would be stressed out by Christmas and doesn’t really understand it anyway. It’s just about what is best for her, even if it’s difficult for us. The caregiver is wonderful, we have met her in person and have been communicating with her through this process. And she lives close to our house so we can visit often.

So many people have asked me how we are feeling. To be honest we are feeling a lot of things. Sad, angry, happy, relieved, nervous…all of it. It will be a huge relief for our family, us and the boys, because the last few months have been traumatic for us with her behaviors and being in the hospital six times in two months. We are worn out. It will mean more time with the boys since we don’t have to do the millions of doctor’s appointments and hospital visits we have been doing with her. I seriously won’t know what to do with my time. Actually, I will just be catching up for a while on the things I haven’t been doing for the past few months. We are contemplating how to reorder our life after this huge change. We feel God leading us into a time of rest. Kaki came to us exactly six years ago last month and we are going into the seventh year. In the Old Testament God said that every seventh year would be a Sabbath year of rest from planting and harvesting. The fields would be dormant for that year. We are praying about what God has for us as we enter this seventh year and how to best heal from this past year of trauma for our family.

This doesn’t mean we will not still be involved with Kaki, but we hope in a much more relational way. We will get to go do fun things with her and not have to do the hard parts of care giving. We are looking forward to that. It’s weird. It’s not a normal thing at all to have your 17 year old move away from your home, but it’s where we are. We know the next few weeks and months will be different and there is a grieving process even now. We cannot yet see the good things that God will no doubt bring from all this, but we are trusting and keeping our eyes on Him and listening as He leads us. We would love your prayers as we enter this holiday season. It will be difficult and we could use prayer as we walk through it.

Happy Birthday Kaki!

Happy Birthday Kaki! I can’t believe you are 17 already. I’m not going to pretend things aren’t difficult right now. I wished so much more for you when we brought you home than we are currently seeing. I look back at these pictures of you in Hong Kong and when we first brought you home and see how much you have declined recently and it breaks my heart. I don’t understand why. We have tried so hard to find answers for you, to help you, but the doctors don’t know what is wrong any more than we do. I KNOW God is doing something. I KNOW he has his hand on you. I KNOW he has a plan. But right now I cannot see it and I’m sad and frustrated. I want so much more for you. Adoption is supposed to be a happy picture but it isn’t always. It’s trauma and loss, and for reasons we don’t understand, you have declined. I wish you could tell us. I wish we could know what you are thinking. We have anguished and prayed and cried and begged. We have come to the conclusion, and God has led us in the direction, of placing you in an alternative family setting with just you and a caregiver. I pray that this is what is best for you. I pray you will find more peace and will improve, but I don’t know for sure, and that is hard. I don’t want you to think we have abandoned you, we will be there to visit often. We are doing this because we are hoping it’s the answer to your issues. Please know how difficult this decision was for us. We will grieve, and already do, the life we wanted with you. I don’t know why we are in this place right now, but I pray we will grow and learn from our experience. I pray we can help someone else who is going through something similar, although I pray we are the only ones. I wouldn’t wish this on anyone, but I’m not naive enough to think it hasn’t happened to other people.

Sometimes love is letting go. Sometimes love is sacrificing what you wanted for the sake of someone else. Sometimes love is accepting that your perfect picture will never be. We accept you as you are, but we want more for you and we hope there is more. The doctors are not optimistic right now and that is very hard, but we keep hope alive. I hope you realize how much your dad and I love you. We would do anything for you. We have been through so much together and today I’m going to hold on to the good moments. That moment we first saw you, playing football with your brothers, the way you love balloons and ice cream. I pray for more moments like those, they have been absent lately. I pray for a bright future. I realize that we may not see that here on earth but I KNOW we will in heaven and that is what keeps me going, that is what gets me through.

Happy Birthday Precious Child of the Most High God!

What I’m hearing

In our situation with Kaki my default is to push things forward as fast as I can and get relief from the terrible place we are in right now. My humaness wants out, now! I don’t like pain and difficulty, who does? But recently, in my reading and study, the question was asked of me, ‘what are you hearing from God’?

First off, I know God is leading us in the direction we are walking with Kaki. It is not the direction I ever wanted but it’s where He is leading. When we adopted her I had visions of us keeping her in our house forever. And then when she came home and she struggled so much that first year I thought, well if we can just make it till she’s 22 and out of high school then she can go live in a house with some other kids like her and be happy. But then this summer when her behavior and health deteriorated, and I wasn’t sure what to do, God opened the doors for us to get the Innovations Waiver and get her into an Alternative Family Living arrangement, which is a home with caregivers with one or two residents, I struggled with it at first. It’s not how I wanted it. It’s not what I had in mind. In the US, most kids live with their parents till age 18 or beyond. It’s not “normal” for kids to move out at 17, or more to the point, for parents to kick their kids out at age 17 for them to go live in someone else’s home. It’s just not the way of things, but it’s what is happening with us and we struggle with that. We struggle with feeling like failures as parents. So, the other day I was lamenting all that and God spoke to me. He said, “I’m doing something in Kakis life and it’s not about you, get out of the way and let me work”. It’s not about my feelings, it’s not about what I want or dreamed of, it’s not about me, it’s about what God is up to. He’s up to something, and that something will be for her good in the end. I am assured of that and I have surrendered her to Him. It’s His job to figure out where is best for her to be and not me. It’s not about what I want. That’s a hard place to be in for me, but also easy. It’s hard for me to surrender, I like to control things. I’m used to making things happen and getting what I want, if I’m honest. My mom taught me to be a strong woman and never give up. So, to step away and let God lead this thing is not my nature. I am also giving up my dreams of having a daughter and all that looks like on Pinterest. Tea parties and dresses and whatnot. None of that is what she is capable of or wants and that’s hard. But God has something better. That’s the easy part. He is in charge of finding her the right place and opening the doors, I just have to patiently wait. (not easy for me).

The second thing I’m hearing deals with the patiently waiting that I hate doing. God has been telling me that I have to sit in the place of waiting until he opens the doors. If I get myself out of the waiting too quickly I won’t learn the lessons and I’ll make things harder for myself. Case in point is Abraham. God told him he would give him a son, Abraham believed God but got tired of waiting and went off to make things happen for himself with his wife’s maid. They had a son and it messed things up royally. If he’d just waited for God, things would have been easier. God makes people wait until they are ready for things. This time of preparation we are in is necessary. He is preparing us for something better and greater. There is loss, there is pain, but in the end he will bring new life and new opportunities.

I’m hearing these things, but will I choose to listen. It’s a daily process. I’m writing this now more as a reminder to myself then for the purpose of other people reading it. I need to remember what He has said in the dark moments of doubt and despair.

What’s going on with Kaki

I wanted to explain, all on one place instead of a million updates on Facebook, what is going on with our daughter Kaki. To understand where we find ourselves, I have to go back to the beginning because I find as I talk about our recent issues they come as a surprise to some, so I wanted to give some history. In November of 2013, we adopted Kaki from Hong Kong at age 11. She had been living in an institutional setting most of her life. It was a residential school for kids with disabilities and it was one of the better places out there I think. When we visited they really seemed to care about the students and she was well cared for. She liked living there because it was all she had ever known. She has severe intellectual disability, meaning her IQ is less than 20, when a normal IQ is around 90. She is unique because most people with Intellectual Disability have IQs around 70, so hers is much less. She functions at about 1 year old level or less in some ways. She also has epilepsy. Most people ask me if we knew what she was like before we adopted her, and yes we did as much as you can tell from written reports. We hoped, probably naively, that we could change her and she would make gains by living in a family and getting good medical care. We had high hopes for the things she could achieve. We knew she would always be disabled but we hoped she would improve. There were reports of her hitting others at times when she was frustrated but we assumed that was from a lack of parenting and we could improve that. When Glenn met her the very first day he realized she was more combative and challenging then we thought. Of course, we thought we could just push through and things would improve in time. And how could we just walk away?

When she came home things were okay for a while. She came home on one medication they said was used for her epilepsy, it was Lorazapam. It’s a strong sedative that is not used on children in the US except in emergencies and certainly not daily, as she was taking it and had been for years. Her doctor’s immediately took her off that medication to then try to replace it with an appropriate seizure medication. It was then that her negative behavior started. What we didn’t realize was we had been experiencing what’s known as the honeymoon period for the first couple of months she was home. Older adopted children often are well behaved initially and then show their true colors as time goes on. She began to hit me and compete for Glenn’s attention. He was initially not aware of her behavior, it was subtle, but I saw it of course. That is often the case with kids with Reactive Attachment Disorder, as we later discovered she had. We sought out attachment counseling for her and I, and the therapist told us about RAD and it saved our marriage. She was trying to pit us against each other and doing a pretty good job at first. Once Glenn realized what was going on he made sure to not fall into it. When she would come and literally sit between us or try to hold his hand and pull him away from me he didn’t allow it. We tried counseling for months but were not successful due to her very low IQ and understanding of herself and the world.

That summer things got really bad. We realized she needed some type of antidepressant or something so we tried one but it made things worse. After school let out she began to refuse to eat and would get angry and rage against us, specifically me and the boys. When Glenn was at work on a couple occasions I had to tell Sam, who was then 10 years old, to take his three younger brothers and lock themselves in their bedroom and not come out no matter what. I would then hide from her so she could not hurt me and try to watch to make sure she was safe. I would then call Glenn to come home so he could try to calm her down usually by physically restraining her. I couldn’t be with 5 feet of her without her attacking me which made physical care very difficult as she requires full physical care. I was also pregnant during all this, expecting our son Luke. She kicked my stomach and bit me on multiple occasions, but God had his hand on Luke. That fall we were at our wits end. Finally her doctor put her on a anitpsychotic medication called Risperidone and it was a game changer for her. Overnight she began eating and slowly we made progress in her behavior. By the time Luke was born in November, she was doing well. We thought we had dodged a bullet and things would be fine.

Fast forward to about a year ago. She was having some physical issues due to being on Riserpidone for so many years and so they decided we should take her off to see how things would go. Immediately we knew that wasn’t going to work so we put her back on the medication, but for some reason it no longer worked. Since last fall we have tried multiple medications and have been working with a psychiatrist to get her under control. This summer things really went down hill and we had to go the psychiatric ER for the first time because she was self harming, refusing to eat and attacking me and her brothers again. This time we knew more. We knew how to get help. Back in 2014 we didn’t knew what to do, so we didn’t talk about it. Even our close friends and family didn’t know who bad things were. On September 11 things came to a head. I took her to her psychiatrist office and he told me there was nothing else he could do. She needed to live somewhere else, like a home with only her and a caregiver who was trained to handle her needs. She couldn’t handle the family setting of our house. She needed more than what we could provide. I knew this, we have known for years but we hoped we could just get by until she was an adult. Kids with RAD are triggered by family settings, specifically mothers. We are known as the nurturing enemy. We represent pain and loss and she cannot get past that. She craves attention that we cannot provide. We had tried to find a place we could afford for her to be but her insurance didn’t pay for such things and we couldn’t afford to pay out of pocket. A couple of days before this I was praying about the situation and God told me to email this one social worker. She worked for Cardinal innovations which is who manages Medicaid for disabled children. We cannot qualify for Medicaid on our own so we were applying for special funds. The waiting list is 10 years long, literally. I sent an email and the social worker called me that same day and said we could apply for emergency funding but we were unlikely to get it because they only give it out to the most serious cases and only have a few spots each year. I made the application anyway.

So, on September 11, Kaki’s psychiatrist suggested I called Child Protective Services to see if I could voluntarily give her up to them to be put in Foster Care and get the help she needs. I wept in his office knowing that was my only option at that point. I took Kaki to school and went to my moms grave. I needed to talk with her. I know she isn’t there but I went to be near her and to talk to God. I yelled and cried and begged God for another way. The next day we took Kaki to the ER and they admitted her to the psychiatric ward at CMC. I hoped maybe they could do something with her medication or something. At that point she was refusing to walk, or eat and was very violent at home. They kept her for 12 days to adjusted some medications. That made her more physically capable but they did nothing for her behavior. They discharged her and she came home September 24. Things were worse than before. Her psychiatrist then recommended another hospital called Behavioral Health. Things got worse over the weekend and on Saturday we took her there to the ER. They said they could help and would admit her, but ultimately they made some quick medication changes and discharged her Tuesday, saying there was nothing else they could do.

In a huge answer to prayer we found out we got the emergency funding I applied for back in September. So, in a month or two she will be able to transition to a residential setting that she needs. I know that will come as a shock to some and some will not understand, which is why I am explaining all this. For now we will endure things as they are until she gets placed. Every day is hard. We are heartbroken and this is not at all what we had in mind. God is assuring me He has a plan, we just have to trust. He will bring healing to her, it’s just not going to be as we planned it. This is by far the hardest thing we have ever experienced. We wish it could be any other way, but we know that it’s what’s best for her and our other children. We wanted everyone to really understand what’s going on and how we got here. As we transition her over the next month or so, please pray for us. It’s heartbreaking and we are grieving and yet there will also be feelings of relief  when we have peace again in our house. Pray for peace in our house and our hearts and most of all for her as we go through this difficult process.

Happy 13th Jordan!

Dear Jordan,

Today you turn 13! I can’t believe how fast it has gone. Just yesterday you were showing me your pet caterpillar “Callie” and learning to ride your tricycle. And now you are almost 6 feet tall and in middle school. I want to tell you today how proud I am of you and how much we love you!

You have always been my laughter. You were making us laugh the minute you were born, peeing into a box of sterile gloves immediately after birth, and haven’t stopped making us laugh since. You make friends easily and are liked by so many people. God has given you so many talents but making people feel loved and special is one of those. You have a heart for other people and a gift for really seeing people and knowing how they are feeling. I love the way you care for those around you, especially Mimi Duncan. I’m so glad you have gotten to care for her and know her. I can see caring for others in your future.

Having the ability to see how others are truly feeling is a gift, but it also comes at a cost of having anxiety. Don’t let that get in the way of your dreams. I know you feel unsure and don’t know what career path you want to take yet, and that’s okay, you are still young. God has it all planned out, just trust and take one step at a time as He opens the doors. Anxiety can be debilitating and stop you from doing those things in life you really want to do. Keep God in the forefront of your mind and stay in prayer to try to keep anxiety in check. And if need be, always seek help as you grow older. Anxiety is the cost if being very sensitive to other people, which is a gift so many people in this day and age don’t have. You are not a failure if you need to be on medication or seek counseling for your anxiety when you get older. So many people, myself included struggle with anxiety, you are not alone.

You are braver than you realize. Remember that in life. Don’t be afraid to keep your adventurous spirit and try new things. I love how you are willing to step outside your comfort zone, keep doing that.

I know being the younger brother is hard sometimes. Sam is an overachiever and hard to live up to. Don’t ever feel less than him. He is Sam and you are Jordan. You are different and that’s okay. God has a very different path for you then the one he has for Sam. You don’t have to hold yourself up to Sam and compare. You both have so many strengths and abilities that God has given you and are unique and we love you for you. Don’t feel pressure to be like him. You make your own path in life.

Don’t be afraid to make your own decisions. I know you lean on Sam a lot for guidance, but I want you so feel like you can disagree with him and step out on your own out from under his shadow. I’m glad you value his opinion and he is a great role model, I’m thankful for that, but you are your own person and you will see the world differently than he does. “You do you” as Sam says. You are a smart, talented, witty, fun guy and you be you.

As you enter the teenage years I know you are a little apprehensive of the changes that come during those years. It’s going to be fine, don’t let it overwhelm you. We are here cheering you on in your successes and failures, because there will be both and that’s okay. We love you more than you could ever realize and we are proud of who you are now and are excited to see who you will become in the future. Happy Birthday Buddy!

Forgiving those who continue to hurt you

I googled the title of this blog this morning. I’m sitting at home pondering this idea. How do you forgive someone who you have to live with who continues to hurt you? So many of us have to live in situations with someone who has hurt us and continues to do so whether they do that because they don’t realize they are being hurtful or maybe they do. I guess the first obvious question is why should we forgive at all?

Ephesisans 4:25-27

25 Therefore each of you must put off falsehood and speak truthfully to your neighbor, for we are all members of one body. 26 “In your anger do not sin”[d]: Do not let the sun go down while you are still angry, 27 and do not give the devil a foothold.

I heard a bit on the radio the other day about this verse. The preacher was speaking about not giving the devil a foothold by forgiving those who have hurt you. That is why we have to forgive. It’s good for the other person, but frankly they may never know we have forgiven them and it won’t effect them. We need to forgive because it frees us. When we harbor resentment and anger towards someone it’s because of unforgiveness, usually. I’ll fully admit I am struggling with this right now with my daughter. It’s been five years of hurt, but particularly the last few months of just her constant hatefulness towards me is wearing on me and I don’t have the best attitude towards her all the time right now. I know I need to forgive, but that’s hard when it’s a constant dripping of pain. She is continuously spitting, hitting and being hateful to me and really all of us right now. I know in my head it’s not my fault, but when she is happy with others it certainly feels that way.

I read an article on how to forgive and the author said one reason we don’t forgive is to put a wall up between us and the person who has hurt us so as to protect ourselves from further hurt. Bingo. Exactly my issue, I’m sure. We all have previous hurts in our lives but I have quite a few I struggle with from my childhood and young adult years. Those hurts make it hard for me to trust people and I will throw up a wall quickly if I sense I’m about to get hurt. I think it’s fairly common amongst people, particularly those with deep childhood hurts. It’s also a product of loss of the past few years, there has been a lot of it lately and some really big painful ones, and this is just more of that. It’s loss of what I wanted it to be and it feels like failure right now. I can’t understand why Kaki is so angry right now and it’s terribly frustrating for us, and for her I’m sure. I try so hard to be empathetic with her but my flesh is tired and gets in my way and I just get angry. And that’s where the devil can get a foothold.

So how do I deal with it? I know I can’t let that happen, but man I don’t know how to keep it from happening. Glenn and I were discussing this. Our house feels like a war zone lately with her constant lashing out. I have prayed peace and calm over this house and her, and continue to do so, but in the meantime…. I know God is working something in all this, or I have to trust He is. I cannot see a good end frankly, or not the end I wanted. I don’t see the point in the suffering and that’s hard. I feel like Paul on the ship in the storm. The boat is breaking apart and we are just trying to hold on for a rescue. Unfortunately I know enough Bible to know God generally lets things get really ugly before they get better, and honestly that’s what I’m afraid of. I don’t doubt He has a plan but am I going to like that plan? It’s not my plan I can tell you, cuz we past that exit a while back on the road to the land of this really stinks, lol.

I find myself coping by doing things I can control. I clean and organize stuff. I bake. I do things I know I can control the outcome and they come out looking all pretty as a Pintrest page. It’s masking the real issues though. The real issue is me letting go. I gotta let go of this situation. I gotta let go of the outcome I wanted. I gotta let go of trying to fix it. I gotta let go of control.

I don’t like that. I don’t do that well. Who does really?

Why is it so hard? Because I don’t trust God enough? Probably. I’m a spoiled child who wants things my way and I think maybe God doesn’t understand the situation fully and I should enlighten Him. lol

It just all comes down to letting go. Really letting go. Not saying I am, cuz that’s easy, but actually doing it, every minute, every second. Letting go. Forgiving, because I have no other choices and there’s no reason not to anymore because I’m not trying to control this thing. I have no control over what she does or doesn’t do, that is God’s problem. She is God’s child and his to deal with. Not my circle. I can rest and stop striving and stop trying to figure out a way out of this mess. He will provide in his time. I gotta keep reminding myself because it’s SO HARD.

Spin moves

Glenn and I have a saying that when we hit a brick wall in life we don’t just stop we do a spin move. We find a way around what is seemingly blocking us. We are good at trying not to get too down about things and keeping our spirits up with our special kids and their issues but lately we have run out of ideas. Our daughter, Kaki, has severe intellectual disability and has the developmental ability of about a 1 year old. For the past year or so she has had behavioral issues that have been increasing. We have seen numerous doctors and have been working with a special psychiatrist who specializes in developmental disabilities but we still can’t get her stable. She is self harming and harming those around her. She is very unhappy and we can’t figure out why. We have been working with a neurologist because she has epilepsy and has been refusing to walk and having what seems to be periodic muscle weakness. They have done every test possible and they can’t figure out what is wrong. When school started she refused to walk down the driveway so I started having to use a wagon to transport her. Now she is refusing to walk at times at school. She will end up in a wheelchair soon if things don’t change and I don’t know why.  No one has any answers. We are frustrated and scared about what the future holds. We need prayer as we make decisions and seek help. We need wisdom and answers. We need God to intervene in our situation. I know He has answers and He will make those known to us in His time, but I’m tired and I don’t know what to do next. We are out of spin moves.