Walking with Grace 2010

On September 26th we'll be participating in the annual walk for Down Syndrome.  For several years we have walked with Carrie's co-teacher's (and close friend) team in support for her son, Will.  We often run into some of Carrie's current and former students and their families (for those that don't know Carrie is an elementary special education teacher -- she has had many students with Ds).  It used to be called the Buddy Walk, but now in MN its called Stepping Up for Down Syndrome (some legal thing I guess).  Anyway -- it’s a real cool day for people in the community that have been touched by Down Syndrome.  It takes place at Como Park in St Paul.  They have food and a dj (you'd be missing out if you made the walk and didn't take a moment to appreciate the dancers on the dance floor at this event).  The Walk is a short jaunt around the lake, but is just a small part of why we are all there.  This year it has a whole new meaning to us.  We are excited that some of our family and friends will be joining us to celebrate the pending arrival of Gracie and help raise money for the Down Syndrome Association of MN .  It is our intent to continue to make this an annual event, but this year, for the first time, we will be walking as team "Walking With Grace".  We are very much looking forward to the day. 

 

 

 

Incoherent ramblings

Clueless and Innocent Toddler, Young kid witnessing the divorce and all of the mudslinging that entails, travelling back and forth every weekend,

Latch key kid, never really getting close to either side of my family, Insecure, trying to fit into new school after school.  I've had my heart broken a couple times by both girls and athletics.  I've been fit and fat, fashionable and obviously not.  I've been a runner and a weight lifter and a couch potato, a drunk and dry.  I've had extra money and been flat broke.  I've lived in a townhome, an apartment, brand new house, and now in a small old house.  I've lived alone and with others.  I think about all of the things that have felt so terrible that in the end turned out to be not as bad as I thought they were at the time.  I think about how I've hurt others unintentionally due to my insecurities and the fact that all of the places that I've been in my life have resulted in kind of a screwed up man in some aspects.  I'm cranky, short tempered, selfish, irritable and obnoxious at times - I need to take better care of myself and for the last several years have talked way more about it than done anything.  When I reread this I realize that I've kind of been focusing on the negative, but I do know that I have a lot of positive aspects and have had many great experiences in my life.    I think about all of the lives that I've lived and my life now - I think about how lucky of a man I am -- The most obvious things to point out here is that I have Carrie and Lylli.  Carrie is a saint to put up with me and I truly do know that.  She is beautiful, intelligent, and very calm - In many ways my opposite, but it sounds better when I say she's my perfect compliment instead of opposite.  And Lyl - what a blessing she has been - smart, funny, beautiful -- I look at her everyday and thank God for allowing Carrie and I to bring such an amazing person into this world.  I think about all of the events that were important to others that I didn't participate in because of where I was at personally at different points in my life -  I failed to see the importance of my support.  I see it now.  I'm not pouting or doing a whoa is me, I know that I've done many good things in my life, and I know that it does me no good now to dwell on when I've made bad choices in the past.  But I can learn from them and once again, I see it now.  Its not about instant gratification or living a selfish life, its about being a good friend, husband, dad, brother, son, cousin, uncle.  Its about leaving things better than I found them.  Its about doing things that fill others' buckets instead of emptying them.  Its about making the best of what I've been dealt -- A lot has happened this last year that has forced me to do a lot of thinking, the largest being the pending arrival of Gracie - and as I've said before, she's not even here yet and she's making me want to become a better man.  So, I want to thank everybody that has ever been in my life in any way.  I pray that I have been a positive part of yours and for those of you that I have hurt in any way by my actions conscious or unconscious, I am truly sorry and promise to work on it in the future

 

 

 

 

 

big girl bed

Saturday was a big day/night in the Delaney household (oh how times have changed).  Since Carrie doesn't start teaching again for a few weeks and life will most likely be chaotic when Gracie arrives, not to mention, probably the biggest reason, that we only have one crib -- we decided that it was time for Lylli to start sleeping in a bed.   We went to Target and let her pick out sheets, a blanket, and pillow case.  When we put her down for an afternoon nap, I went and bought her a twin mattress.  Later that day, we took the crib out of the room, rearranged a bit and setup her new bed - Actually at this point, we just put the mattress on the floor, which based on the thud we heard when she eventually slept in it, it was a good decision to start this way.   We have a retractable gate on her door that we use to keep the dogs away when she is playing in there, etc.  This gate is a livesaver these days, because its nothing for her to open the door.  Anyway - Bedtime was a challenge.  It took many attempts of setting her in her bed, closing the door and walking away -- only to have her two minutes later open the door and cry at the top of her lungs -- I think she was less scared and sad, then she was exploring the fact that she was not locked into a crib for the first time in her 22 months (although I know for a fact that she could anytime she wanted, climb out of the crib, we fortunately never had it happen).  After about an hour of trying to get her to sleep she finally quieted down.  Escited to see how things ended up, I tiptoed down the hall to take a look -- I had just left the bright living room and her room was dark, so I was having a tough time seeing her.  As I leaned in over the gate to get a better look, I heard a little sigh at my feet.  I called Carrie over -- she took a picture.  See the attached BEFORE and AFTER pics.  We were able to eventually move her to her bed where she lasted several hours until she wanted to come into bed with us.  Quick update to the story -- I came home from work on Monday and she was so excited to show me her new bed and night number three saw a little less crying and screaming out the door, but I will admit we were still second guessing our decision a bit.  But I am very happy to report that last night, night #4, she barely whined, never opened the door and then slept until after 6 this morning!! 
 

Still in Limbo

Well our latest trip to the perinatologist and cardiologist has us a little frightened.  Besides the obvious and certain surgery needed around 4 months old to repair Gracie's AV valve defect in her heart, there is additional concern about the left side of her heart not developing as it should.  The cardiologist said that there were a few signs that we could be optimistic, but when Carrie asked if she was going to make it, he said that he was almost certain that she would be born, but its what happens after that which will determine the rest. Not exactly what we were hoping for as a response.  Its been determined that she will delivered at Abbott Hospital downtown.  This will allow them to immediately rush her to the NICU at the attached Children's hospital.  This is tough on Carrie -- When Lyl was born, they immediately set her on her chest and, with the exception of a 15 minute stint later in the day so they could do a couple standard tests, she was with us in our room until we left the hospital (and come to think about it about half way into it, she sent me to go check on her).  Carrie has given me strict instructions that I have to follow Gracie to the NICU and stay with her there.  I guess if we have to go through this, at least we will be in the best place for it - If we were to deliver at the same hospital that we had Lyl, they would need to rush her to Children's in an ambulance, etc.  I often think about how I wish that we didn't know anything in advance and found out when she is born, but when you consider all of the details that we are able to work out to give her the best chance of making it, I am thankful that we know in advance that she has Ds.  We go back on Sept 16th to see if she has made any improvements. 

 

 

 

Speaking of Holland

not sure where Carrie found this, but I like it a lot:
 
When my baby was born with Down syndrome, I received a writing, called "Welcome to Holland," by Emily Perl Kingsley, from my local support group. I am grateful for the inspiration which has been felt by many who read it and love that was put into creating it. I would like to relate my experience with a different analogy of the feelings involved when having a child with a disability.

For years, you save for your dream home and the time has come to buy! You walk through several houses, many of which are interesting, but not quite perfect.

Finally you find THE house. The location is great. It has 5 bedrooms, 4 bathrooms, hardwood floors, and one entire wall is a giant window showing the most breath-taking view that you have ever seen.

Everyone you know is happy for you and your new house. You can't wait to move in.

On the day you are scheduled to close, you receive a call from your lawyer explaining that the homeowners changed their minds and have decided not to sell.

You are shocked and sad. You have planned, waited, and prepared for this house, but now it is gone. You picked out new paint colors and decorated it in your mind at least a million times. You wonder, "How could this happen to me?" You think you will never find your perfect house again.

You remember a cute little house in the city that you walked through a few months earlier. There was something about that house which was comforting when you were there and the need for a home of your own is still strong. You decide to put an offer in for this house. Your bid is accepted. You move in within weeks.

When you tell everyone about the loss of your "perfect" house and plans for moving into the second one, you receive many condolences. Everyone is sad for you and all of your friends and family wish they could "fix it." Nobody thinks it is fair.

You go to the new-older house immediately after you close. You wonder why you didn't realize that it was so close to your favorite store. As you walk in the front door, you see a beautiful window, full of stained-glass artwork, which was hidden by a curtain before. As you continue to walk through, you notice the stained and dirty carpet, decide to look at what is underneath, and are amazed by hardwood floors which are even more elegant than those in the other house. There are only 3 bedrooms but two of them have adjoining bathrooms with awesome claw-foot, porcelain tubs which are very deep, and you can't wait to soak in them.

You begin to realize what made you like this house initially. There is sweet character here. It is unique. There are rooms attached to rooms and many hidden spaces that you never expected to see. This house will need work and there are things about it that aren't quite "perfect," but you kind of like the imperfections; they add to the personality of the house. You immediately develop pride and love for this house because it is yours, imperfections, beauty, character, and all.

You can't wait to tell those you care for how much you love your new home. You want to show it off to everyone and let them know how very excited you are. You don't want to feel sadness anymore; you love this house and wouldn't have it any other way. The other house would have been nice too but the one you were given will bring you just as much joy so there is no need for condolences. This home is where you belong, you know it, accept it, and love it. You will be happy here and look forward to the experiences you will have within its walls.

This past weekend my wife finally decided to copy the video on her flip camera onto her laptop for a back up - or more likely so she can have room to start over since it was pretty much full.  Regardless of her reasoning, I was sitting across the room as she and my daughter were watching some of footage on the tiny little screen.  It was so cute how she kept wanting her to rewind to see Daddy -- "I See Daddy" she'd say over and over again until Carrie would rewind to show her.  As I sat and watched a strange thought occurred to me -- I imagined myself not being there and Lylli asking Carrie to see her daddy over and over, not because it was a neat game and that she's recently started a small daddy phase, but what if I died and that was the only way she got to see me.  It made me really think about how I need to do something to get myself healthy.  I think about our high maintenance pack of dogs - the 8 year old mastiff, Milo, that recently tried to kill the 5 year old bait dog Henry, the queen bee (actually in Zoe's case, the B should be capitalized if you know what I mean), and last of the dogs but not least, Bodey, the dog with Cerebellar Hypoplasia that has gotten much worse in his mobility in the last year or two and pretty much only moves when we carry him.  The Dogs aside, there's our pride and joy - the hurricane that we call Lylli who is as active as they come, And that doesn't even include Gracie on the way with, no doubt, many challenges ahead.  My girls need me and will need me for a long time -- that said, I am going to do what I need to do to get myself back to a healthy place.   

 

What a difference a year makes