Answers We Didn’t Want

For so long now we have been wanting answers.  Answers to why Hannah is so sick.  Answers to why she has changed so drastically; basically overnight.  Answers to how, when, why……I have begged, pleaded, yelled, screamed and cussed at anyone that would listen; yes….even God! Answers that we haven’t gotten, until now!

Yes, we finally have some answers, not all of them, but some nonetheless…..but they weren’t the answers we wanted to hear.  We wanted to know what was wrong, but we also wanted it fixed…..quickly if possible; but that isn’t to be at this time.

This isn’t going to be a long, drawn-out post and frankly I am not willing or wanting to share details at this time, but I am here asking if you would please pray for us.  We have some huge decisions to make….AGAIN!

We have to focus on Hannah, her illness and hopefully one day a complete recovery, but at this time we need prayer, lots of it!  If you want to pray specifically, here is a list of things we need prayed for right now:

1.  To find the right treatment that will work.

2.  To keep Hannah well…..her staying healthy is huge right now and we really need her to stay germ-free.  It has always been important to keep her well, but now more than ever.

3.  That Hannah’s symptoms will subside.

4.  School…..this is a big one for us.  We need to keep Hannah well and we found out last school year that was nearly impossible.  I will be the first to admit homeschooling scares the living you-know-what outta me!  Not only am I not a teacher, but I am not a Special-Ed teacher so the thought of teaching her academics is definitely out of my comfort zone.  I admire all my friends that homeschool; I just never thought it was going to HAVE to be something I considered.  Plus, Hannah LOVES school and she misses it and her friends.  How in the world can I teach her proper socialization skills if she can’t socialize?!?  Stressing me out like you wouldn’t believe!

5.  Hannah’s diet is most likely going to have to change again and it won’t be fun for her or us!

6.  Financially this could get very expensive.  God has ALWAYS provided for us and I know he will continue to, but there are so many things that we are finding out that insurance won’t pay for….makes me wonder what good insurance is half the time.  We are going to be seeing a couple of new specialists that do not take insurance.  Again, I know God will provide it all but we are definitely making it a matter of prayer.  Praying that He will lead us in the direction that He would have us to go.  Our ONLY concern at this point is that Hannah gets the treatment that she needs and that she makes a 100% recovery.  We are trusting Him to make it all possible financially.

7.  Please pray for Dennis and me.  The last nearly 9 years has taken its toll on both of us and the last 8 months has completely worn us out.  We are weary and stressed…..our bodies, minds and hearts are feeling the stress and the burdens of this all and we covet your prayers for strength, mercy, grace, wisdom and endurance that only God can give.

I am not one to ever ask for help.  I am one of those people who have always thought I will just do it all myself because I know I will do it and do it right.  But, I am asking for your prayers.  I am asking for your understanding if I can’t and don’t want to talk about the particulars of Hannah’s illness and I am asking for you to extend me grace during this time.  The last 8 months have been a battle for us and right now it is raging…….

Until next time………

Learning To Be An Introvert

One of the most difficult “lessons” over the past nearly 9 years for me personally, has been learning to be content with no socialization for the most part.  I haven’t been “alone” and there are times that being alone would be welcomed by me but I truly don’t get to socialize and fellowship like I used to either.  I think everyone needs both….alone time and socialization and I am greatly lacking both!

By nature, I am an extrovert.  I am a Type A Personality….always have been.  It is very hard when you are an extrovert and are technically forced to become introverted.  People like me are usually happiest in crowds.  We don’t meet strangers.  We don’t mind being the center-of-attention and we CRAVE socialization.  We love to talk, ask questions and for the most part we are very loud and demonstrative.  I was THAT person for 33 years and for the record I get it honestly…..in case you haven’t met my dad; I am just like him!  For those that know him, you understand!  HA!

So, when Hannah was born and pretty much since; my nature, the way I had always been had to change!  I had to learn to be okay alone.  I had to learn to be okay without having a conversation all.day.long (until Dennis got home from work and then Lord knows at times he probably wished he had stayed at work because I talked non-stop from the time he walked in the door until he fell asleep.  If truth be known, I still do).  I had to learn to not be the center-of-attention; and come-on people….if you are Type A and an extrovert you have to admit it is something you enjoy! Let’s just be real here!  This becoming an introvert thing has been quite a journey and adjustment in itself for me; and at times not a fun one!

But…..that is where God’s grace has once again come in!  He has helped me deal with it all.  He has helped me learn to love myself and be okay with who I am.  For many years I didn’t love myself and I wasn’t okay with being me; now I am.  I can look in the mirror now and I see someone who is loved and DESERVES to be loved; and there is real peace in that.

I would lie if I said that I didn’t crave socialization…..I do!  I still don’t meet a stranger and I still ask tons of questions and talk non-stop…..it is just rare that I get the opportunities!  I will say that I am not a big fan of crowds now though and that is most likely due to the fact that I am a major germaphobe and in large crowds all I think of is the millions and millions of germs/bacteria and virus’ swarming around ready to pounce on me!  HA!  I am not real concerned with me getting sick but bringing something home to Hannah scares me to death!

I do also crave my “alone” time.  I don’t get it often and wish I could get more of that.  I get it when I go to Publix or Target (about the only 2 places I go), and I enjoy that….time to think and reflect.  Actually this blog post came to me at Publix yesterday!  HA!  I was thinking about how I have changed as a person and how I have truly gone from being an extrovert to an introvert over the last 9 years.  Can’t say it is a bad change because for the most part I have truly learned to be okay with me and I am just wondering how many people can say that truthfully.  I just now can; never could have before.  I used to find my worth and value in others and what they thought of me…..now I have learned to find it in the Lord as He truly is the only one that matters!

The reason for this picture on this blog post is so you can see the other 2 "extroverts" in the family!  I hope one day soon I see this side of Hannah again!  For those wondering this is my dad (aka Boompa)!

The reason for this picture on this blog post is so you can see the other 2 “extroverts” in the family! I hope one day soon I see this side of Hannah again! For those wondering this is my dad (aka Boompa)!  He truly is the biggest extrovert I know!

Until next time……….

A Reason For It All

This nearly 9 year journey we have been on with Hannah has been eye-opening to say the least. With everything we have been through with her from the many health issues, sicknesses and major surgeries and especially the past 8 months of constant sickness the Lord continues to show me that He is in control and there is a reason for it all.

I can look back to 2001 when Dennis and I got married and see the way God began preparing us then for what we would be facing now.  Things happened early in our marriage that we didn’t understand, but now we do and we know that was God’s hand on us and His mighty provision for us. Dennis and I got married in August of 2001 and in November, just 3 months later, I got laid off from my job due to the department I worked in being discarded.  Needless to say it freaked Dennis out!  I wasn’t as freaked out as he was but his only thought at that time was we would never be able to survive on just his salary.  Granted, it was nice having those 2 incomes and there are days I miss not only working but having that extra coming in; but God showed us during that time I was unemployed that we could indeed survive.  I did eventually get another job, but because of the future that is unforeseen, we decided even after I started working again that we would not depend on my income.  We lived solely off of Dennis’ income until I quit work altogether after Hannah was born.  I will say, we probably initially decided to live off of Dennis’ income out of fear, but we also know it was God’s prompting on our life.  You see, we didn’t know what was going to happen a mere 4 years later and we didn’t know that we would not only need that saved money from my years of working but that I would also have no other choice but to be a stay-at-home mom.  But, God did……God knew that we would need that savings and He knew that He had to begin preparing us for the future.  He gave us the wisdom to make that decision and I am so grateful that He did.

Now, with that said…..the dreams of building our “dream house” and the dream I have always had of driving a Range Rover haven’t nor probably will ever come to fruition and honestly for a while there I was not content with my home and my Buick Ranier!  I wanted the big beautiful home!  Now….not so much!  You see…..with Hannah right now, it takes me about 2-2 1/2 hours to clean my home from top to bottom.  If I had that big dream house I would never be able to keep it clean and quite frankly that would make me crazy (or at least crazier than I already am), as I HAVE to have a clean home! Hannah requires my attention 24/7 right now and our house is just the perfect size for me to be able to do what I need to for her and keep it clean too; so I am thankful that I don’t have that dream house!

Another thing I have found funny about my reflecting today is the one thing that has ALWAYS been a thorn in my side about our home is the swimming pool.  Dennis bought this house before we ever met and it has an in-ground pool.  Now, I know a lot of people would love to have a pool, but NOT me!  It has always been a pain in the you-know-what for me.  I finally convinced Dennis after we found out I was pregnant with Hannah to get me a pool boy!  He found me a pool man so I am very thankful for Fred because I hated cleaning that thing!  What most people might not know about me is I really am not a “true Florida girl.”  I should really live in a big city away from the water or live in the mountains!  I hate the water (I don’t even know how to swim and I promise you if I went under I would never come back up).  I hate the beach.  I hate the sun.  I hate laying out. I despise the heat and humidity!  So, you can probably see why I hate the pool in my backyard…..that was until…..TODAY!  You see, right now Hannah isn’t happy.  She isn’t herself. She is trapped somewhere inside of herself and until I asked her the other day if she wanted to go in the pool, I have rarely seen a smile…..until then!  So, the last 3 days she and I have been out by the pool.  She sits on the top step and plays with beach toys.  I do what I despise and layout in a lawn chair for about 5 minutes and then I just walk around.  But each day, for about an hour my little girl smiles, laughs, splashes and squeals with delight……those are things we haven’t seen in months…..so, right now I am so thankful that the “thorn in my side, pain in the you-know-what” is right out my back door!  Again, God knew we needed that pool, even if it wasn’t until now!

I guess, I was just reflecting today on why things happen and how God prepares us for those things.  I could tell many more stories of how God prepared us years prior to Hannah for this journey we would be on today….so, I guess there is a reason for it all…..even when we don’t see it at the time of difficulties in our life.  God is just preparing us for something bigger, something greater and all He requires of us is to trust Him and give Him the glory.  I will be the first to admit that sometimes I lose sight of there being a reason and my focus is off….so, I think it is good sometimes to reflect on God’s provisions in the past and how He led you to where you are today; even if the place you are in is dark and all seems hopeless…..it’s good to know that what He brings you to; He will bring you through!

Happy Girl!

Happy Girl!

Trying to "water" Henny with her watering can.  Henny was NOT impressed.  Go figure a lab that hates the water!  HA!

Trying to “water” Henny with her watering can. Henny was NOT impressed. Go figure a lab that hates the water! HA!

She didn't want to "mile" (smile) for this picture but  I told her to smile for daddy and she gave me this one!

She didn’t want to “mile” (smile) for this picture but I told her to smile for daddy and she gave me this one!

Until next time…….

Fighting

I think you could ask just about any parent that has a child with special needs and they will agree that at one time or another they have had to fight for their child.  For me, it seems I have fought the last 8 1/2 years.  We fight for education.  We fight for acceptance.  We fight for health.  We fight for socialization.  We fight for rights and freedom.  We fight for tolerance.  We fight for grace and understanding.  We fight against ignorance.  We fight for……EVERYTHING.

Fighting can be exhausting; but it is necessary in this journey.  Right now I am fighting to get back the child I had prior to March 15, 2014!  Yes, the child prior to that was sick; but she was the “old Hannah” and I am fighting to get that child back.  The truth is…..I can handle Hannah being sick; hell, I have handled that for her entire life.  I can accept and deal with fevers and low immunity.  What I CANNOT accept is just sitting around waiting for this “new” Hannah to get better and back to her old-self.  If I have learned anything in this 8 1/2 year journey, it doesn’t matter how much you pray, beg, plead and hope….God is not going to just give you what you ask for unless you put forth effort, do your due diligence, research, study, press issues and INSIST on answers!  I am in fighting mode right now.  This life we are living is NOT FAIR to us and especially Hannah!  So, fight…..I am and will!

Dennis and I are both exhausted, concerned, worried and stressed out!  It has taken its toll on both of us and we refuse to just sit by and accept this “new normal.”  I have been on the phone all morning and I am determined to find someone to help us……no matter where we have to go or what we have to do.  Our life is a fight right now.  We are fighting for our little girl so she can have a life!  So she can go back to school, have socialization and education.  So she can play with others, have friends and lead the normal life of a child with down syndrome!  Funny thing, I have never cared if she lived the life of a “typically developed” child, but I am not going to accept the fact that she can’t live the same life of her friends that have Down Syndrome!

Fighting…..it isn’t fun.  It is hard.  It is lonely.  It is like banging your head against a wall.  It is frustrating as hell but in this life…..in this journey…..it is necessary!  You utilize brain power you didn’t know you had.  You research the internet and books until you can’t see straight and you exhaust your resources….but you fight and you don’t give up until you get what you are looking for.

So, for anyone that is wondering…..the Blankinchip’s are in fighting mode and we will not rest until we get our little girl back!

Until next time……….

Finding Balance

Am I the only person that has difficulty finding balance in life?  You know there are so many aspects of life to balance; that for me, balance in all areas is so difficult to achieve.  There is a social aspect, personal aspect (otherwise known as “me” time).  There is emotional, mental and spiritual balance.  Also, finding a way to balance marriage, children and the things you HAVE to do…..geez, just typing it all out exhausts me.  I honestly don’t know how women with more than one child and a full-time job do it all.  My hat is off to those of you that seem to balance it all; in every aspect.  I.just.can’t.  I am working on finding that balance; but I fail miserably at it.  I find at the end of the day if my house is clean, the laundry is done, breakfast, lunch and dinner have been consumed…..well, that is accomplishment!  But, I.WANT.MORE!  I want balance.  I want to be able to squeeze in a workout (like I used to).  I want to have more than a 5 minute Bible reading and prayer time.  I want to accomplish more around the house than I have been able to lately.  I do try to take into consideration that I spend HOURS in the bathroom with Hannah everyday; and no that is NOT an exaggeration…..HOURS!  I do try to get outside with her each day and we do some schoolwork as well (not as much as either of us would like….Hannah would seriously sit for 2 hours at a time for schoolwork), but I just don’t have enough hours in the day.  I know there has got to be a way to balance it all…..I know women who balance it all and more; but I am lacking the knowledge, energy and even the organization to make it happen.  I consider myself very organized, especially when it comes to Hannah’s needs.  Her medications, schedule, routines, schoolwork….everything is extremely organized but everything else in life is….well…..not so organized!

too busy

Balance is so important as I have realized over the past week; but finding it, sticking with it and making it happen is the difficult part.  For the last 8 1/2 years, until this past weekend, I have NEVER taken time for myself and in all honesty I realized what I was missing out on!  HA!  I will admit too that I have not balanced marriage and motherhood well at all.  Again, my hat is off to those of you who have balance in those two things, but I seriously suck at it.  I am thankful for a husband that understands and is full of grace when it comes to all the times I have had to put Hannah first and foremost (which is the majority of the time).  Not many men would be so sacrificial, understanding and WILLING to take a backseat and put his child before anything else!  We both have had to do that so much the last 8 1/2 years that trying to find quality time for each other is difficult.  I guess my greatest desire is a getaway for just Dennis and me.  I know that might sound selfish but we haven’t had one of those since having Hannah and we could use the time; but we also know that Hannah requires so much more than the “typically developed” child does.  She especially requires so much more right now than she ever did before so the thought of leaving her without one of us is really scary.  I pray that one day it will get easier and we will feel comfortable leaving her even for just a weekend.  I continue to remain so thankful for the 4 years Dennis and I had prior to Hannah being born.  We built a strong foundation on the Lord and when a marriage is built on Him…..the rains and winds and the storms of life can rage on and on and it won’t be shaken!  So thankful for that strong foundation!  So thankful for a husband who holds fast to the Lord and holds tight to Hannah and me when those storms rage.  I know I am blessed, but finding that balance is not easy!

So, here I am working on finding balance……I’ll let you know if I ever find it, although it is looking doubtful right now!  HA!  I am guessing that I am either alone in this OR there are people out there who feel the same way and just can’t admit it!  Like I have said before…..I write this blog to help others like me not feel alone….so, if you are having difficulty finding balance just know I’m right there with you!

balance

Until next time………

Let It Go

let it go

One of the most popular songs right now is “Let It Go” from the Disney movie Frozen.  I will be the first to admit that I have difficulties letting things go.  I don’t forgive easily and I trust very few people.  I am more open on this blog than I am in person.  I don’t let people in or get too close to anyone for the most part.  The funny thing is I am more open with complete strangers than I am with people I know.  I think that is because complete strangers can’t hurt you emotionally like people you know can and most likely will at some point.

I have had some time over the last few days to reflect.  My wonderful husband saw that I needed a break from our reality and gave me some precious time alone while he took care of Hannah.  During that time I reflected on the past and present and it put a lot of things in perspective for me.

I am working on letting things go.  The people who have hurt me, the things that are idols in my life, the hopelessness that I have felt the last nearly 8 months and the things holding me back from being who God wants me to be…..just letting it go!

I have had people let go of me recently and that is okay.  In one of my last blogs I asked for grace and understanding from people and for those that couldn’t give it to me; I asked them to just walk away from me and frankly a few did.  That is okay though.  Sometimes people come into your life for a season and then the season passes and they are gone.  I am learning that everyone in our life is there for a reason; but once they move on, you can’t dwell on that.  You just have to move on as well.  That’s okay…..just let it go!

I am learning to let go of the things in my life that keep me from doing the important things that I need to do.  I find I am a better mom and wife if I don’t let certain things interfere.  So, I am learning to turn loose of those “idols” in my life and replace them with things that matter!

Hopelessness can eat you up mentally, emotionally, physically and spiritually.  It is a killer that puts you in a place that is unhealthy.  During this time of reflection I realized just how unhealthy I have become.  I realized that I had allowed the hopelessness of our situation to eat me up.  I am letting go of that hopelessness and finding HOPE again!

Learning and trusting God’s plan for your life is difficult, but something that I am really focusing on right now.  Listening to the calling He has on my life……yes, right now that calling is to be a mom to Hannah and a wife to Dennis.  That may be all He ever wants for me and I am okay with that.  But, I want to be so tuned in to His will that I don’t miss what else He might have for me if and when that time comes.

I have had some good chats with myself lately.  Yes, I talk to myself and I answer myself and quite frankly they are some of the best conversations I ever have, HA!  I am in a better place now.  I didn’t really know how bad of a place I was in until I had this time to really just breathe.

So, here I am……letting go of the things that are not important and the people who have rejected me and my family…..without bitterness, without resentment and without sadness.  Seasons come and seasons go and we must pick ourselves up, move forward and not look back!

Just let it go!

let it go 2

Until next time………

 

A Glimmer of Hope

After weeks of Hannah not sleeping and trying new medications that weren’t working and new medications that were working, but we had to get the dosages correct has been nothing short of HORRIBLE!  BUT…..I am “cautiously optimistic” that we might finally be on the right track getting Hannah’s seizures under control and her stabilized.  I don’t use the word optimistic lightly, as I am not one to be optimistic; as I am too much of a realist, but in this case I am cautiously optimisitc and seeing a little glimmer of hope.

hope in christ

I have seen over the last couple of days glimpses of the “old” Hannah.  The smile, the sparkle….not much and not often; but I have seen glimpses!  I got my first REAL hug and kiss for the first time in 6 weeks last night before she went to bed.  She initiated it and that melted my heart.  Dennis, too…..has seen a few glimpses and we have heard her say more in the last few days that reminded us of the “old” Hannah prior to the last infection in March.  She still has a LONG way to go; but we are hopeful!

I have to say it if weren’t for Dr. Kim, Hannah’s pediatrician and Dr. Marvin, Hannah’s cardiologist that listened to Dennis and me; heard our concerns, our heartache and hopelessness….if it weren’t for them believing us, taking action and making Hannah a priority I don’t know what we would have done.  For those that have children but have never had to deal with lots of sickness, health issues and surgeries; there is probably no way that you can fathom what the last 8 1/2 years has been like and I am so grateful that you don’t “understand.”  I wouldn’t wish what we have been through on my worst enemy.  There is nothing worse than watching your child suffer and there is nothing you can do about it.  It is a hopeless and helpless feeling.  I am so thankful to the Lord for the doctors that He has placed in our life!  These doctors have been with us since Hannah was born.  They have taken the best care of her and us.  They have loved us, listened to us and HEARD us and that is HUGE!  A lot of doctors appear to listen but they don’t hear and that is a trait that is so rare;  but in the case of Hannah’s doctors we have been so blessed for doctors that hear us and take action!  Dr. Kim and Dr. Marvin are more than doctors; they are family!  So grateful for them both!

So, yes…..right now we have a glimmer of hope and it is more than we have had in almost 2 months.  Yes, Hannah will probably need this medication for years to come.  Yes, it wasn’t what we wanted for her but we are so thankful for medication that can help her feel better and keep the seizures at bay.  I told Dennis a few weeks ago that I didn’t sign up for this and he agreed.  But, we both know that God signed us up for this and we trust that He has a plan, a purpose and that one day it will all be revealed to us.  So, we take comfort in KNOWING that because He signed us up for this; he will always give us the strength to endure whatever comes our way and we will do our part to see to it that He receives all the glory for the good that WILL come out of this.

jeremiah2911

There is hope…..even just a glimmer; but nonetheless, it is still HOPE!

Until next time……….