Tuesday, November 18, 2008

Living without door handles

Alyssa had a good day. The following is just the emptying of my mind with a humble heart. Please know I don't claim to know it all but as you'll see I'm willing to share what I know.. walking my son to his bus stop this morning a wisp of crisp cool air moved across my face, it tickled my neck lightly flowed downwards against my spine causing me to shiver. Then almost in unison my son and I said "..it's getting cold" and instantly I thought but it's July! I literally stopped in my tracks thinking to myself no no no NO it's a not July it's a it's a November? My minds voice rising an octave because I wasn't quiet sure,then confirmed my question by I scanning the near naked trees, yeah falls here it is November. Remember we did the candy treasure hunt a few weeks back, and the harvest party at school it is fall. My thoughts wandered on about fall for what seemed like minutes but was actually only a few seconds, I know because I easily fell back in step with my son who had begun moving more quickly in hopes that it would be warmer closer to his stop. Or maybe he was hoping the bus would come more quickly if he looked like he was ready to board. Whichever all I knew was that it is possible to live life in such a manner that it stands still and moves at hyper speed all at once. I know this because I live it everyday.

My husband had taken a few days off from work prior to Alyssa's birth. We planned on painting our hallway, the trim in the surrounding areas, in addition to sanding, panting and placing new handles in the doors. He removed 3 doors and got started. He was first side tracked by a great summer day tha we decided to a family thing figuring he'd make up the slack when I was in the hospital. So we had our bathroom door unhinged between workhorses on our porch for what we thought would be a day. I was going to be induced so we thought we had a general idea of how things would progress. We were wrong the bathroom door was rehung a week after Alyssa's birth with out door handles, just like the linen closet and a few other key doors; the painting remains too. It's as though it all stopped, but we are living through this at the same time. I know I'm not making sense I guess like many things door handles in the grand scheme of things really aren't that important in life.

Before my conversion reading the bible was like reading Greek. Now it's like a cool drink of water when I have a dry throat. Not that I understand all of it or the fullness of every verse but it brings comfort and peace. And yes I do have a better understanding of the words contained within. It is like being given a key and I am now able to open doors that before I could not. I've picked up the bible many of times during my unsaved days and but put it down again because it just didn't make sense~ it didn't speak to me. Today I better understand why many call the Bible the living word,(other than the fact that God is ever present, that Jesus lives) because it speaks to my pain, fear, or joy, my confusion, to me. If you have yet to experience this I know to you this may sound crazy but I hope that one day you'll come to understand my desperate attempt to explain what it is like to feel your spirit /soul renewed.

I went to church as a kid and liked it very much. By 7 or 8 had the books of the bible memorized and even earlier knew John 3:16 by heart (..for God so loved the world he sent his only begotten son..) but I missed out on having sound biblical teaching. I understand now how beneficial it would have been growing up. Even though I liked church by 14 I liked other things much more...Knowing God's word (knowing the bible) is a significant piece of the Christian walk. I turn to my bible for direction, and understanding. If I had, had better training as a younger person..well all I can say is knowing your bible is important and I'm still putting this statement to use..constantly learning verses for the 1st time as a result of this trial.

I am fortunate that the Lord knew my needs and saw fit to lead me to a church that not only practices sound biblical principals, but is focused on providing sound biblical teaching to all who come through the Lord's door~ not just adults and not just to those who are saved but to all. I came to worship there after a period of years that I thumbed my nose to the idea of worshiping the Lord in a church. I was "spiritual" and created my own ideas of how God wanted me to worship him~ I thought I knew better of what he wanted me to be or do~ I give thanks today that HE knew and provided a means for me to be saved.

I'm sharing this because today was an odd day. A day in which I took a look at my personal inventory. Some things I liked and was proud of and other things not so much. I think I was just trying to understand what am I doing here, really why I am here in this place in my life with this family these children..and what am I suppose to be doing for HIM (not so long ago I would have said doing for me) yes the Lord what does He want me to do? My life is about him or at least it should be. I wish I could say I always act in a manner that showed that I know this but bare bones it's true.

Whew Alyssa had physical therapy today and she enjoyed it so much. She smiled and cooed, stuck her tongue out with delight. Awesome. This from a girl who wasn't suppose to live but a few days, a girl who wasn't suppose to be able to recognize her parents..I am thankful for the Lord's wise placement of families/people in our family's' life that are experiencing similar trials. Some of whom are right in our own church and are shining examples of how to persevere, how to rely upon the Lord, and show that it is possible to get through the "I'm dying here" days. I am thankful for caring friends and family that have been constantly present following this blog and/or sharing their support~encouragement.

I know I've gone on for way too long and I'm all over the map today I'm asking for prayers to be said on behalf of our family and for the following while I may not always list a name as we know that Lord knows and we can just lift them up and He will do the rest: for Brandon; for a boy with diabetes and his family particularly giving his mom courage and strength; for a mom/wife with breast cancer that her chosen treatment will work and that she will be a BC survivor; for a husband/wife being content in the Lord's timing in granting them children and that the practical measures being taken will result in a healthy pregnancy;for Hannah, Brianna, Anabel,Kayden, Jennifer,Allissa, Bethany; for those caring for elderly parents; for our expectant moms and new mom (dads);and you

Oh, the depth of the riches of the wisdom and knowledge of God! How unsearchable his judgments, and his paths beyond tracing out! "Who has known the mind of the Lord?Or who has been his counselor?""Who has ever given to God, that God should repay him?"For from him and through him and to him are all things. To him be the glory forever! Amen. Romans 11:33-36

Wednesday, November 12, 2008

Celebrating 4 months

It is reasonable to put forth that I am so daft that it took something as earth crumbling like our daughters diagnosis for me to fully acknowledge the living presence of the Lord and be readied for the growth He had in store for me. I can be daft and stubborn, something this big was beyond my concept for my life time..He knew. Something this big in one shot clearly showed me this is way beyond me and all I could do was turn to God and faithfully ask-seek-receive..He knew. My kids are my heart, he knew how to reach out to me. One hand was the pulling away of something (someone) I cherished yet the other hand was gently guiding me holding me...

Author Joan Webb wrote: "our heavenly father is actively involved in our growth; he encourages us according to our capabilities and understanding at the time. He does not push us; he waits until we are ready. If God told us everything about ourselves and life all at once, we would be confused and crushed. Instead he teaches us based on our spiritual and emotional age level.." Can I hear an AMEN on that~ it is so true.

As I've said before and will say again I am coming to Christ a worn sinner; been there/done that and he accepts me and loves me molds me and grows me. (Sorry Ed,kids, mom..) I've never experienced or will experience another love like this.

Joan began a prayer by saying Lord you are a compassionate and caring father. Thank you for nurturing my development step by step and giving me understanding just as I need it. Help me to be as patient as you are with my simple and in prefect attempts at gaining maturity.. I'll add: Thank your for these wonderfully beautiful 120 with our daughter and showing us the hearts of friends and family alike today as I cry with tears of joy and grief thank you. You have placed wise people in my life to help guide and direct me (our family) in this journey thank you. Thank you for charity, and organizations like Now I lay Me Down to Sleep, Songs of Love, Prenatal Partners and more; support organizations like Trisomy 18 Foundation and SOFT; thank you for my church and the ability to worship freely, for the brethren within, for our Pastor(s) and their wives, the deacons and Sunday school teachers and others; for the Aunts, cousins, sibling and loved ones who've been a support, for other moms (and Dads) who are dealing with T18 and other long term illnesses who've reached out to us in kindess and thank you for this day. Thank you for our daughter. Amen

I try to balance or edit my thoughts here. I can ramble and not all venting is good, I want to paint a positive light even with this bleak news. I want to share our struggle but also share the hope that we do have. Not all my aaah-haa moments that are shared here come from my own brain. Those I trust offer good advice and listening ears (...you may be sleep deprived and you may benefit from more rest...or have you read..and have you tried..) that has enabled me to better use this outlet. It is by God's grace that Ed and I are on this journey and living it with such love, support and encouragement. Our kids have been given grace and strength too. Even as we are unaware of what each day holds we are gifted with joy, and healing. Thanks for reading and joyfully celebrating 120 days!

Be sure to turn down the volume on the player at the bottom of page before clicking the video belowSongs of Love created and Kimberly McManus sang Alyssa’s song. Pictures were compiled from home shots, Bill Tilton Photography of Delaware (affiliated with Now I Lay Me Down to Sleep) and Ms. C.G were appreciate your generous efforts.

Talking it up

Alyssa moved into her big girl bed~the bassinet. We had a make shift bed on her changing table that worked well due to her size and needs. Now though she is bigger and moving and we need sides so she doesn't take a tumble. She seems to like her new digs~ and we've had a continuous feeding pump for a week now!! The feeding pump slowly feeds her through out the night eliminating my having to get up and do our hour routine. I still need to check on her but it cuts down our routine barring any problems to about 15-20 min. The feeding pump is working out well. It is a little unnerving that she sleeps so well.

Alyssa is back on Hospice, with a new provider that seems better equipped or in tune with the needs of an infant. We were given oxygen in the event of an apnea episode or as needed. So far no recorded apnea events! Yeah. We had hoped never to use the oxygen but over the last few weeks have used a few times when it seemed like Alyssa's breathing seemed..chunky. This generally happened after a temperature drop, it just seemed like her breathing was more labored. We figure it can't hurt right to have a little more O2 to the brain right?

It is this new hospice provider that ordered the oxygen and the feeding pump once determining our needs. This provider seems more proactive in helping us identify what are needs are and identifying things that could be helpful for us. The other seemed to want us to tell them, but that's hard when this is your first dance~ya' know. I had only heard of the feeding pump a few weeks ago when reading Magdalena's blog (she is a few weeks younger than Alyssa.)

Here's a frustration..during these many initial evaluations most doctors preface before fully reviewing an issue or examining my child with a sentence something like "what brings you here...?" I say "we want to evaluate Alyssa's..." They say" you do realize that she has Trisomy 18, and you are aware of the outcomes..." I nod thinking "DUH!!!" then reply "yes" and smile. Not a real smile, not a warm and welcoming smile, more like a smile that says "if I weren't smiling right now I'd be chewing your ear off with a host of not so nice comments and possibly would be using your tie (or collar in the case of a female doctor) to floss my teeth when I am through. Instead I follow with a sigh, and attempt to release some tension with a good natured quip; reminding myself why it is important to keep a tame tongue (James 3).

It bothers me greatly that doctors feel the need to preface before treating Alyssa that she has T18. I understand that T18 is part of her make up and certain health issues arise b/c of it. Some health issues will not be caused by T18 or if it is some things can be treated.

I'm getting frustrated just writing this...my daughter is a baby first not a diagnosis. My daughter deserves to be looked at as a whole person. If you have arthritis and then a joint needs to be replaced. Should you not replace the joint b/c you have arthritis and that could be the cause of the joint deterioration. Never mind that you are in pain or can't use that joint well, big deal you know you have arthritis..it's equally frustrating to talk about Alyssa to a doctor and they compare her to other babies her age versus looking at her in the framework of Trisomy 18. I know this sounds contradictory to what I just said.

I mean that, YES I do know a 3 month old should weigh more than 7lbs. However in the world of Trisomy and for Alyssa specifically she had done wonders in the weight department. It is not helpful to correct me during an exam repeatedly to say that she is small or in less than the 5th %tile for growth,when I show a glimmer of joy in my daughters ability to thrive.

It is understood that if she were on the typical path, she would be bigger, able to hold her head up well on her own etc. and etc.. However we got off the typical path on 7/15/08 about 1am in the morning! We are trekking a new path and while there have been others before us on this alternate route stones have been left unturned and we are willing to kick them up in hopes that our girl will see the dawn of a new day (over and over again).

Saturday, November 8, 2008

Thinking Out Loud

We are blessed that the Hospice nurse that leads the "team" that Alyssa is on, lives locally and knows about having a child with disability first hand. She along with our EI nurse-she too is an experienced special needs parent-have been so helpful in planning preparing and understanding all of this. Very helpful. In the last two weeks I've spoken with 2 families from this area with daughters that have T18. The first being this area's S.O.F.T. organization's (www.trisomy.org) contact person. Her daughter is 22 years old! I literally cried when I heard that, as when I called her I had no idea if her child was living. The second family has a little girl that is nearly 6 years old.

In speaking with them,The thankfulness that I have Ed to rely on was stirred up again. In my conversations with Kathy from S.O.F.T. , she mentioned many dad's hit the high road when their child is born with a diagnosis such as this or they become detached and never "bond" with the child. I am very fortunate not to have experienced either situation. Ed is a good and loving father to all of our kids. In fact he is very kind and attentive to most kids. He's the dad that goes and plays and gets yelled at almost as much as kids for playing.

Alyssa's arrival posed a new challenge and he has stepped up. He is interested and attentive to Alyssa's needs. As needed he willingly comes to appointments. I say willingly because he could come and just sit there like a bump on the log but instead he is interactive and a good listener. To see him engage doctors, thoughtfully write out or think up questions on the fly tells me how invested he is in our daughter and her welfare. It is a real help to me and a comfort. Not that I would have expected otherwise but sometimes it's easy to take such things for granted; that he'd be here. He is wrapped around this little girls finger; hard to imagine cause Jessica has him wrapped pretty tight too! I am though thankful that he picks up the slack in addition to working. I am thankful for each day we have Alyssa in our lives and for the way generous support and normalcy of life has formed together well for us since her diagnosis. I recognize how fortunate we are and sincerely have tried to express appreciation for all this each day.

There are frustrations though that come along and when I share them please know that it is not my intent to complain rather I'm just trying to process things and figure out how best to handle all that is placed in front of us...I had asked a mom of another sick child how to manage my doctors appointments for Alyssa. Emotionally as well as practically. A key piece of advice was to remind doctors that our daughter deserves dignity and quality in her life for however long she is here. I often battle with myself to be my daughters mother, yes a mother who can advocate for her girl but a mother. As a former Advocate/Social worker it is very tempting to want to take on that role in Alyssa's life ~ you know present my daughter as a case vs. my child. She has though a wonderful nurse Case Manager and other capable professionals to help us deal with the medical pieces and balancing the doctors. Alyssa needs a mom she only has 1 of those. Like many pieces of this puzzle it's all a balancing act I can't be too sensitive by the observations of or the findings that the doctors have. I have to present our concerns for Alyssa with confidence and a willingness to be firm in what we know to be true while accepting that each step is a learning experience too. It's a step by step process.

We all have trials, disappointments, or illnesses to deal with in the mix of all the good things in life. So if for no other reason than to communicate hope in an otherwise sad situation I thank you God for all that is good in our lives. Every day it seems a question is posed about how to proceed in one area in her life or another. Wisdom to know what to do and when is constantly needed...Everyone, should be quick to listen,slow to speak, and slow to become angry. James 1:19