Lonely but NEVER Alone

Being a full-time caretaker can be a lonely road. It is a place that few understand and I wouldn’t want anyone to have to walk this same road. There are daily decisions to be made and the pressure that comes with it. As a full-time caretaker I also still have the daily duties of everyday life so at times it can be tiring and feel completely overwhelming. As my husband and I get older there are other obstacles in caring for Karissa. We have noticed that there has been a lot of wear and tear on our bodies and our own health. While most of our friends and family are becoming empty nesters and beginning to do things like travel or just be able to do things that they may have been waiting to do, we are still 100% responsible for our beautiful daughter’s care. And going places or doing things have actually become more difficult. We either do things separately so that one is home with Karissa or we take her with us and it requires so much planning and effort. This is not what we thought our lives would hold at this stage of life. It has been something that I have been struggling with because there are so many moments where I feel alone and isolated. I long for things that just are not going to happen or come to fruition and I have been reckoning with this.

I have learned a couple of things as I walk this road. The first is that my faith is key to how I cope with everything in life, especially lonliness and the responsibility of full-time caretaking. Second is that people will fail you (as I am sure I fail my friends and family), only God can fill those deep places of my heart that I long to have filled. Third is that I don’t have control of what others do or say, nor to do I have control of what my day may hold. What I do have control over is my own attitude and reactions to life situations and disappointments. So as I walk this road I am asking the Lord to fill those places in my heart that so desperately need Him. It is humbling to be in this place. I pray that He will teach me and that I will continually strive to be more like Him. I do pray that He sends help and friendship to my unique situation, and I am also thankful for my family and friends that love me right where I am at.

Finally I recognize that my lonliness is a place that is drawing me closer to the Lord and I am thankful that He never gives up on me and shows up each and every moment of everyday. He wants to speak truth into my life so that I don’t beleive the lies. The truth is that I am loved and I am not alone. The lie is that everyone is too busy or that people don’t care. When I believe the truth my heart is full of gratitude, when I believe the lie I feel alone and defeated. My circumstances didn’t change but my heart did.

I am thankful for all that the Lord has done for me and my family and I as I continue to share I pray my thoughts and the things the Lord is showing me will bless even one person. We are here to encourage one another, to love one another and to be a blessing each and everyday to those around us.

May our lives be a reflection of the Lord and His love for us!

 

A Lot Can Happen in 24 Hours

So the last couple of days has proven to me that no matter how much I plan my days, or how much I think I have things figured out I DON’T. I am thankful for the Lord and all He is teaching through life’s ups and down.  In a 24 hour period this week I received news that my father injured himself, that a family member was going through a very difficult time and that another was facing what could be serious health issues.  Now if that weren’t enough I am still going through tests and such for my bladder, which has been in pain since September last year, and now my thyroid so this season has been intense. I have had to be more flexible then ever before and more trusting then I could have imagined.

A song in my heart this morning was a chorus I grew up singing in church and some of the words go; “give thanks with a grateful heart, give thanks to the Holy One, give thanks because He’s given Jesus Christ, His Son….” And I have learned that it is hard to be resentful in circumstances if you will be grateful.  And each of us has something in our day that we can be grateful for.  It doesn’t have to be anything big but when we start thanking God for the little things it gets easier to continue doing.

So many scriptures flood my mind these days and I appreciate that I can open the Word and find encouragement. When I am tired and life seems to be beating me up, Isaiah 40:31 is something I treasure. “But those who wait on the Lord will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not faint”.  How can you read that scripture and not just be uplifted? It has so much  hope in it and I treasure it in seasons like this.

Another scripture for me right now is Isaiah 41:10 “Don’t be afraid for I am with you. Don’t be discouraged, for I am your God. I will strengthen you and help you. I will hold you up with My victorious right hand”. The last couple of days when I would grow concerned about my health or the health of my family members I could feel the Lord holding me up and encouraging me to trust Him and rest in Him.

My circumstances haven’t changed but my perspective has. No matter what the future holds I know who holds the future. That simple thought helps me walk out each day.

I hope to share more of what I am learning and more about where I have been in the coming posts. I just want to encourage you to not only be grateful but to practice gratefulness. We can all be an encouragement to someone whether a text, a card, a visit, or bringing a friend a coffee when you know they are walking through something that is difficult. Let’s come along side each other and encourage one another. When you take the time to do those things it not only encourages others but it will encourage your own soul and you will be find that your heart is a little bit lighter.

Blessings!

Here We Go Again

So here we go again!  I have always enjoyed writing but blogging is a bit different and I question whether to do it or not. But when it comes down to it,  I believe I am supposed to continue and so here we go again!! I hope to share not only what I am learning through Karissa but what the Lord is teaching me overall. I pray it blesses others to be encouraged and know that they are not alone. We are NEVER alone and that brings me so much comfort.

Life with Karissa is never dull and there are always opportunities to trust the Lord even more. So as we continue this journey I pray that I will take the time to share and we can grow together. I would love to hear things that other people are learning too and grow a community where we can encourage each other.

Blessings!!!

 

It’s Been a While…

I have decided to try my hand at blogging once again. So much has happened since my last post that I couldn’t possibly update almost 2 years of life.  However, I can say that life continues to change and we along with it.

Karissa continues to amaze me and challenge the doctors and her parents.  🙂  Last year was definitely a challenge and one that won’t soon be forgotten.  In August we decided to have her g-tube re-positioned, as tests showed it was rubbing against her ribs and pointing upwards.  So we traveled to SCVMC where we knew she would be in the best hands.  Surgery went off without a hitch.  Shortly after we found out that we could not use the g-tube and her seizure meds would have to be done via IV.  Only one of the 4 converted and so we had to choose different medication.  So we chose one that she has had many, many times before.  Thanks to the thoughtful process of Dr. Sum our neurologist who was leaving for vacation, he left a suggestion to place Karissa in ICU if any med changes were going to happen.  They listened and it was a good thing because Karissa went into anaphylactic shock and ended up on and off a ventilator for 13 days.  It was a lengthy hospital stay of 3 1/2 weeks that should have only been 3 days.  She ended up with completely collapsed lung among other things.  Needless to say this hospital stay left me reeling with emotion.  We had so much love and support and we were so thankful.  We were surrounded with the best nurses and doctors and I can’t thank them enough.  We had friends and family visiting daily and that helped tremendously!!

Since that stay so much has changed…we began formula again and it was working for a while and then she started to throw up a bit.  We switched to a third formula and that didn’t work at all.  Finally we decided around Thanksgiving to wean her off the formula and try table food again.  And as of now she is fully on table food and no formula.  The struggle now is keeping enough calories in to keep her weight up.  But she does love eating.  And for that we are thankful.

There have been so many ups and downs.  So many appointments.  We have had some new developments and still some things we are looking into.  We have reconnected with our geneticist, who unfortunately has moved to Hawaii, in regards to the latest issues.  He is looking into a couple of things.  We are searching for a geneticist but the wait to see one is SIX MONTHS!!  Praying we can get in sooner!!

My prayer for Karissa is that she have long life that is filled with joy and laughter.  That she can live life to her fullest.  Each day she teaches me what unconditional love looks like, what trust looks like and what smiling in adversity looks like.  She is such an example to me!!  I am so blessed in so many ways by her life!!

May today be filled with joy and laughter and enough strength to walk through it with God’s help!!

 

Always a Mystery…

Over the last couple of months we have been dealing with Karissa and vomiting on and off.  However on July 11 it returned with a vengeance.  I won’t go into all the details only to say that due to vomiting on Saturday and again on Monday, we had to take her to Children’s on Tuesday the 14th for a check-up, labs, urine cath, and an xray of her abdomen.  With all the labs coming back fairly normal, the drug levels all within low to normal ranges as well.  The x-ray concerned our pediatrician but not so much our other docs as it showed considerable impaction….however Karissa has been going to the bathroom.  (sorry)  So we came home no vomiting on Tuesday but more on Wednesday and worse than before.  So they decided that we should give her an enema….so on Thursday morning I gave it to her and it took a while to work but it did indeed work, HOWEVER, after that I gave her morning meds to her with pedialyte and she continued to vomit.   At this point she was so lethargic and just out of it.  My heart was so heavy for my little girl who has to go through so much and cannot tell me what is going on in her body.

There was a thought that it could be the new formula she has been on since her hospital stay in May, but again thinking it is NOT that due to the fact that she is vomiting without it.  To complicate matters the urine came back positive for the UTI on Thursday…..while it could compound the problem it is not the cause of the vomiting because we had a urine culture done originally and it was  negative. 

The new drug we added in May could be an issue, but again it should be continuous…..but we are talking Karissa.  Each doctor is sort of scratching their head trying their best with the information Karissa gives to figure out the problem.  

 As I prayed and relied on the Lord and the doctors I realized there was a piece of the puzzle we were missing…there was a medication we had stopped back in April for her stomach and perhaps that was the cause of the vomiting.  With all the changes and all the meds, it is just too much for her system.  So I gave her some on Friday and it seemed to help a bit but still she threw up.   So on Saturday I gave it to her first with some formula and waited an hour, then gave her the morning meds and more formula and that seemed to help.  She still had some dry heaves but much better than before.  Still very lethargic. 

Each day there has been some improvement.  She still sleeps a lot and that could be from the medication.  We are working with the doctors but they are all happy that we have been able to keep her out of the hospital.  I thank the Lord for the wisdom He gave us because I truly believe we would have been there if not for that wisdom.   I have been reminded this last week of the blessing of great doctors..truly!!  We have doctors that truly care about our daughter as a whole person and trust us as her parents. Hoping that the next update will have even better news!!!

You and You Alone…

So this morning in  my quiet time I was reading a devotion in Jesus Calling and it spoke of truth….”I am the way the truth and the life.  As you follow Me, I lead you along paths of newness; ways you have never imagined……I want you to find security in knowing Me….”  So those words resonated in my mind throughout my morning and from that the words I could not get out of my mind were simple…”You and You alone”.  So I am going about my day today and I can’t explain exactly why, but those words just keep circling me.  So, I am doing what I do at home with Karissa and taking care of things here, when I had an “aha” moment.  It really is that simple, “You and You alone….are enough” even when I am struggling to understand my circumstances.  “You and You alone….are enough” even when I am disappointed or my day seems too hard.  “You and You alone…are enough” even when I can’t see my way out of a situation.  “You and You alone…are enough”, even when I am lonely.  “You and You alone…are enough” to my EVERYTHING!!   No matter what my day holds, no matter if I have the best day and Karissa too, or it is a difficult day and nothing seems to go right….the Lord is enough.  He sees me through it all.

So I got to thinking that maybe those words could encourage even one person today, that I want to share them for that one person.  It may not seem like it now, it may be hard, or maybe you are in a season of grace and things are going well, no matter where you are in the mix, The Lord is enough!!!  So that is my prayer today…that we would realize that “You and You alone….are enough” in our daily lives, not just in our heads but in our hearts.

Trust and Faith

So this morning I have been thinking a lot about those two words….Trust and Faith.  For me they often go hand in hand.  Because of my faith in the Lord I trust His words are true.  So as I walk this journey out with Karissa, I struggle with those words at times as well.  I have so many reasons to be thankful and I am, yet at times I struggle because I long to hear Karissa say, “I love you mom!” Her care is a privilege, to be able to stay home and meet her needs, but they are at times, also difficult.  I mean I can’t just run to the store or have a moment out it must be thought out.  My days are planned around her care and if she seizes or spends the day chewing her hair, that changes how my day looks. My struggle is with myself really, I feel lacking at times, and discontent in who I am.  I want to please the Lord as a wife and a mother, sister, daughter, aunt and friend.  So it is at these moments when I ask the Lord to help me see things from His perspective and He does.

In Colossians 3:15 it says “Let the peace of Christ rule in your hearts, since as members of one body you were called to peace.  And be thankful.”  Now Colossians 3 is full of great stuff and many truths…but today this verse struck and the commentary in my Bible did as well.  It says..”the word ‘rule’ comes from the language of athletics; Paul tells us to let Christ’s peace be umpire or referee in our hearts.  Our hearts are the center of conflict because there our feelings and desires clash – our fears and hopes, distrust and trust, jealousy and love.  How can we deal with these constant conflicts and live as God wants?  Paul explains we must decide between conflicting elements by using the rule of peace – which choice will promote peace in our souls? ….”

So what touched me so much is the last three words of this scripture….”And be thankful”…so no matter what we are going through, or where we are at, I believe the Lord asks us to be thankful.  I don’t think that means that we need to be thankful for the negative circumstances we may be in, but to be thankful that we know who is in control.  To offer a sacrifice of thanksgiving when things are hard, and to rejoice with a thankful heart when things are good.

My heart’s cry today is that in all things I will shine Jesus and have a thankful heart.  What about you?

Karissa waiting at Tim’s graduation!!

A Time to Celebrate…..

So it has been a couple of weeks since my last post and I apologize for not updating on Karissa’s status in the hospital.  We were there only two nights and she was able to be discharged on Sunday, May 17th.  With the video EEG showing what we already knew, and that is that she has A LOT of seizure activity that we cannot treat because it is not visible to the eye.  It also showed that when we see seizures, ones where it looks like she is sleeping, she is actually having the seizures as we expected.  Karissa did not like having the EEG hooked up and didn’t make it easy that is for sure. Having the nursing staff that we know and love however was such a treat.  Seeing our dietician and friend, Maria, was also another bonus!! We did make the medicine change and will hopefully begin weaning Karissa off one of the older meds she is on.  While in the hospital we also decided to try a new formula in hopes to start a mild form of the Atkins diet.  It will take a few months to transition but that is the hope eventually.  Plus we are adding calories in hopes to add the weight back on that she has lost. We arrived home Sunday afternoon and things seemed to be humming along fine.  Still not a lot of change in the seizure activity but I know it takes time.  Then Tuesday Karissa started throwing up…so we immediately took her off the new formula and because we didn’t  know if she was sick, not tolerating the new formula or the new medicine, put her on pedialyte for the day, removed the new formula and the following day went back to the old formula.  A day like that really throws me for a loop.  We can’t know what is bothering her because she cannot tell us.  So we pray and try to figure it out. With Tim’s graduation days away, and a trip planned to see family in Idaho the day after graduation, it was prayer that saw us through those moments. Wednesday she seemed fine and so we knew that we would be able to take her on Thursday to Tim’s graduation.  It was decided that I would stay with Karissa at home and Rich and Ashley would go to the luncheon we had planned and I would come later with Karissa for the graduation.  Now again, things most people don’t think about, Karissa would not pee that morning….it came time to leave and still she would not.  So knowing that at some point she would I packed accordingly. It was a treasured time to be at Tim’s graduation with friends and family and cheer for his accomplishment.  As proud as I am of his accomplishment, the proudest moment came after I hugged him, his first question was, “Where’s Karissa?”  So we went straight to her and he got down to her level and talked to her.  To me that was the moment I was so proud of.  The picture below is one someone snapped. So afterwards Karissa did pee and it took FOREVER to get her changed but it was worth it to be there for Tim.  Then Rich headed home with Karissa and I stayed in San Jose with the other two for the night.  We got up early and left for Idaho to see my family.  When we were about 4 hours from my parents Rich called to say that Karissa had started throwing up again.  It is moments like these that can radically change the course of your day.  And often they do. We made it to my parents and put in calls to the doctors and waited and prayed.  Once again because Karissa cannot tell us what she is feeling we have to try to solve the mystery.  At least  we knew now that it was not the new formula since she had not been on it for days.  We ended up spacing out her feedings even more and that seemed to do the trick for now. Thanks to my husband and a couple of dear friends I was able to enjoy time at my parents with Tim and Ashley.  We enjoyed the time more than I can say.  Karissa was in good hands and I knew she was safe!! Back at home, she continues to struggle with seizures and sleeping a lot during the day…., and we continue to try to solve the mysteries and pray for the Lord to guide us.  Remembering to be thankful for each new day!!

Tim greeting Karissa right after he graduated!!

The family!!!

An Appointment that turns to Admitting….

So tonight (Friday) I am writing from Santa Clara Valley Medical Center, which for me is a tremendous place to be when you have a daughter as complicated as Karissa.  What started out as a follow up with our neurologist quickly became an admittance to the hospital.

Thursday night Karissa was having a lot of seizures, it was the third time this week, so she was given the meds to stop them.  I left early Friday morning to head to San Jose for our appointment and on the way it seemed she was having a couple seizures but still we traveled on.  We arrived for our appointment and Tim joined us.  Within 5 minutes of her appointment Karissa started seizing for Dr. Sum to see.  Because she had already had the medicine to stop seizures the night before she could not have another dose until 11 p.m. so it was decided to admit Karissa to the hospital.

With this admittance we are in the pedi ICU for observation, a video eeg and being given a loading dose of a new medication in hopes to get her stable enough to send her home.  The AMAZING thing about this is that Dr. Sum is the one on call all weekend, which is what solidified us being admitted….knowing that he would be here made all the difference for me.

We have been so blessed to be among doctors and nurses that love Karissa and show such kindness and care for her.  It is reconnecting with some we have not seen in years and they have not forgotten us.

We have had visitors today and again been so blessed.  Tim, who will be graduating in just a few days has been here helping.  He too had friends here visiting so it really has been a blessing.

I am thankful to the Lord for all that He provides and even in the midst of a storm He is right here with us!!Just a picture when we first admitted Karissa!!

Motherhood….

Mother’s Day is a reminder to us of who raised us, and who we are raising.  Mothers can be biological, adoptive, spiritual, grandmother, and the list goes on.  I have celebrated many mother’s days honoring my mother and her influence in my life.  But it wasn’t until February 22, 1993 that I realized what it truly meant to love the way a mother does.  There is something primitive about it, simple, fierce, protective, deep, awe inspiring and an understanding that you are now responsible for so much.  As the years go by you learn to appreciate all your parents did for you and sacrificed so you could have your needs met.  You also learn that no matter the age of your child or children, you are ALWAYS their mother.

You have dreams for them, things you want them to know and learn.  You want to shield them from pain, protect them from a harsh world, and your heart hurts when they hurt.  you rejoice in things big and little and a simple “I love you mom” or a hug can make your entire day.  Motherhood is truly such a privilege.

So what happens when even the simplest things you have grown to appreciate in motherhood are dramatically altered?  What happens when motherhood is altered and you have to accept a new way to mother?  I am talking about doing life with a disabled, nonverbal child.  Who will never say “I love you”, will never bring you a flower or write a sweet note.  Who will ask of you to give everything you have and reward you with  a smile. That transition at times has not been easy.  I have had to learn to appreciate the little things in life.  To be thankful for each milestone, no matter how small.

As Karissa grows and changes, at 15, she doesn’t want to be held or cuddled and loved on, she wants to be left alone and can often be a bit aggressive.  Learning to let go of expectations has been a difficult task for me.  I can only do it with the Lord’s help.  He is my anchor and in Him I can be thankful.

So this Mother’s Day I am thankful to Tim, Ashley and Karissa for giving me the title of Mother.  I am thankful for a mom who helped mold me into the woman I am.    I am thankful for a mother-in-law who raised an amazing son that I have the privilege of calling husband.  And I am thankful for friends and family who have their own “mom” stories and are a part of my life.  For those of you who are moms, grandmas, aunts, daughters, sisters….Happy Mother’s Day!!